running head: patient and public engagement …

Running head: PATIENT AND PUBLIC ENGAGEMENT HEALTHCARE POLICY

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Patient and public engagement in healthcare system policy:

An integrative review

Caryl Harper, RN, BA, BSN (Distinction)

UVIC ID: V00243084

A project submitted in partial fulfillment of the requirement for the Degree of Masters of Nursing from

the University of Victoria, School of Nursing Faculty of

Human and Social Development.

Supervisor: Marjorie MacDonald, RN, PhD, Professor, School of Nursing, University of Victoria

Committee Member: Lenora Marcellus, RN, BSN, MN, PhD, Associate Professor,

School of Nursing University of Victoria

October 23, 2015


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Abstract

The need for greater patient and public engagement (PPE) in policy-making in the healthcare

system has garnered significant attention from governments (Lewin, Lavis & Fretheim, 2009). Patient and

public involvement (PPI) has been at the core of the United Kingdom’s (UK) British National Health

Service (NHS) and was accelerated by the Health and Social Care Act 2001 (Tritter & Koivusalo, 2013).

In the UK PPI is implemented to create a national mechanism for holding policy-makers in governments

and health-care provider organizations accountable for planning and delivering health services. One of the

ongoing challenges of engaging the public or patients is how best to involve patients and the public in

health policy and decision-making (Thurston, et al., 2005). In this paper, I explore the findings from my

review on PPE policy to understand if PPE policy makes a difference within the healthcare system. I have

included qualitative and secondary sources, grey literature, and mixed methodology literature published

between 2002 and 2015 (January to March). I conducted an integrative review and organised the findings

using the Services Management (SM) and Service-Dominant (SD) Theory (Osborne, Radnor & Nasi,

2012). The following three themes were identified in the findings benefits of PPE policy, challenges for

policymakers, and governments’ role in PPE policy. An analysis of the key themes revealed a number of

policy challenges and recommendations for policy makers, healthcare and nursing leaders specific to PPE.

The Advanced Practice Leadership (APL), Master of Nursing, University of Victoria program includes

policy competencies. I developed an Integrated PPE Framework for Public Service and Nurse Leaders

that includes APL competencies, theoretical concepts and the findings in this review. Future efforts in

PPE should include research on how PPE is linked to accountability, translated into policy and practice,

and evaluated using standardized, valid, reliable, and appropriate measurement systems.


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Acknowledgement

I would like to extend my sincere gratitude to Dr. Marjorie MacDonald (supervisor) and Dr.

Lenora Marcellus (committee member) for their support. Their guidance and expertise in scholarship

have inspired me to improve my critical thinking and writing during an extended effort to complete this

project. Most importantly, I thank God. I also thank my sister Bettyanne, friends, physicians, colleagues,

and patient partners in B.C. for without their love, support, inspiration, and continual encouragement this

project would never have come to fruition.


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Table of Contents

Abstract..................................................................................................................................2

Acknowledgements................................................................................................................3

Purpose/Aim of the project.....................................................................................................6

Background and Significance.................................................................................................7

Statement of problem..............................................................................................................9

Methodology.........................................................................................................................10

Problem identification ..............................................................................................10

Literature search .......................................................................................................10

Inclusion and Exclusion Criteria...................................................................11

Data evaluation..........................................................................................................13

Data Analysis........................................................................................................................15

Data reduction...........................................................................................................16

Data display...............................................................................................................17

Data comparison........................................................................................................17

Conclusion drawing and verification........................................................................19

Presentation...............................................................................................................20

Findings................................................................................................................................20

Discussion.............................................................................................................................29

Strengths and limitations.......................................................................................................42

Significance of the findings for:

Advanced Practice Nursing Leaders.........................................................................44


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Nursing Educators ....................................................................................................48

Public Service Professionals and Policymakers........................................................50

Recommendations from the findings for Future Research....................................................51

Conclusion............................................................................................................................52

References.............................................................................................................................54

Appendix A. Interchangeable terms and common elements for the concept of patient

and public engagement...................................................................................65

Appendix B. Patient and Public Engagement Frameworks..................................................67

Appendix C. Guiding framework for critiquing qualitative literature..................................68

Appendix D. Guiding framework for critiquing secondary/grey literature..........................69

Appendix E. Summary and Data Extraction of the Sources.................................................71

Appendix F. Mind Map: Interconnections – Patient and Public Engagement Policy.........99

Appendix G. Data display of the patient and public engagement influencing factors,

levels of engagement and policy....................................................................100

Appendix H. Data Comparison Influencing Factors of PPE Policy/Country.....................104


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Patient and Public Engagement in Healthcare System Policy

Purpose/Aim

The purpose of this project is to gain a better understanding of the existing knowledge about

patient and public engagement (PPE) within the context of healthcare system policy. In this project, I

critically review and analyse literature from 2002 to 2015 (January to March) on PPE that holds relevance

for policymakers, nurses, and healthcare leaders. My overall purpose is to position nurses, healthcare

leaders, researchers, policy makers, and patients and families to work together to co-create a sustainable

healthcare system. In addition, I chose to do this integrative review to further my understanding as a

novice Masters-level researcher in furthering my understanding of the policies, concepts, and the existing

evidence on PPE policies. This integrative review has allowed me to explore various PPE policies in the

context of healthcare.

I selected the integrative review as the most suitable method for this project for three main

reasons. First, I wanted to develop a PPE policy framework and by definition, integrative review is “a

form of research that reviews, critiques, and synthesizes representative literature on a topic in an

integrated way such that new frameworks and perspectives on the topic are generated” (Torraco, 2005, p.

356). Second, I was interested in gleaning a more comprehensive understanding about the challenges and

successes of PPE in the context of health policy and policymakers, and the integrative review method

“summarizes past empirical or theoretical literature to provide a more comprehensive understanding of a

particular phenomenon” (Whittemore and Knafl, 2005, p. 546). Third, as a novice Masters-level

researcher, I believe that this review process supports my learning needs. The specific question I am

asking is “Do PPE policies make a difference in the healthcare system?”


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The goals of this integrative literature review will focus at the policy level to

1. Explore, describe, and synthesise the existing knowledge about what healthcare leaders and

policymakers need to know and do to ensure successful PPE in healthcare system policy;

2. Develop a conceptual framework that can inform the future design of PPE in healthcare system

policy; and,

3. Identify areas to inform advanced nursing policy, practice, and research.

Background/Significance

Patient engagement in healthcare policy, practice, and research is commonly believed to be a key

ingredient in high-quality health care systems (Barello, Graffigna & Vegni, 2012). Moreover, patient

engagement in policy (frequently described as “citizen or “public” engagement) helps ensure that the

healthcare system writ large is oriented around and responsive to patients’ and the public’s perspectives

(Carmen et al., 2013). National Health Service Scotland health boards and Foundation Trust boards in

England support the tenet that patients must be involved at all levels in health governance including an

emphasis to involve patients and carers in the design, delivery, and evaluation of services (Forbat,

Hubbard & Keamey, 2009). Additionally, the patients’ involvement in designing, delivering, and

evaluating services provides the context for substantive policy and organizational development (Forbat,

Hubbard & Keamey, 2009).

From a Canadian perspective, I am encouraged about the leadership and collaboration shown

between the Canadian Nurses Association and the Canadian Medical Association 2012 Primary Health

Care Summit. Specifically, the Summit Report identifies priority areas for action included building

professional and inter-sectoral partnerships for advancing primary health care transformation and ensuring


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that the public is included in the partnerships at the local, regional, provincial, and national levels for

system re-design (Lankshear, 2012).

To set context for this review, there are two specific areas that warrant further explanation. First, I

need to explain the meaning of the term patient and public engagement because it is often confused due to

different authors using different terms to refer to the same thing. I also wanted to make sure my search

strategy for this integrative review incorporated multiple terms for PPE to ensure that a thorough and

successful search approach was used in my integrative review. Second, I will elucidate the different

levels of PPE. The levels of engagement are important because I wanted to focus this integrative review

on papers reporting higher levels of engagement from a policy systems’ perspective rather than at an

individual level where engagement is typically between a patient and a healthcare provider.

First, although the concept of patient engagement is increasingly accepted and valued among

health care stakeholders (Gallivan, 2012), there is often confusion about its meaning because, as noted

above, different authors may use different terms to refer to the same thing. For example, in a scoping

review, Kovacs Burns, Bellows, Eigenseher, and Gallivan (2014) found 15 synonyms for patient

engagement in 26 different sources. These terms are often used interchangeably. By contrast, I found

twenty 20 interchangeable terms and common influencing factors for the concept of PPE (see Appendix

A). The most common interchangeable terms were used in the search strategy for sources included in the

integrative review.

Second, there are factors that influence PPE, such as (1) ongoing engagement mechanisms that

support patients and the public to participate in societal decisions, priority setting, and healthcare system

policy development; and, (2) different levels, forms, and settings of engagement throughout the healthcare

system (see Appendix B). The levels, forms and settings of engagement can be described along a


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continuum (Carmen, et. al., 2013). For example, on the lower end of the continuum, engagement could

involve policymakers and/or healthcare providers/leaders informing or educating patients or members of

the public individually on a direct care basis (e.g., self-management, healthcare information). The higher

end on the engagement continuum could involve policymakers and/or healthcare leaders engaging

patients and/or the public in co-creating or sharing power in decision making at healthcare system policy

levels. Lower and higher levels of engagement on the continuum are characterized by lower and higher

levels of patient or public decision making or responsibility. Although there is “the possibility that a

greater impact could be achieved by implementing interventions across multiple levels of engagement”

(Carmen, et al., p. 227), I limited this integrative review to include only those sources related to higher

levels of engagement at the policy healthcare system. I limited the scope to higher levels of engagement

was to keep the focus of this integrative review on organizational and system levels of engagement.

Individual-level engagement (e.g., interaction between healthcare provider and patient) is often associated

with lower engagement levels.

Statement of Problem

John Doyle, former Auditor General of British Columbia, argued that in order to get public

participation right, there needs to be the correct balance amongst the competing priorities of government

(British Columbia, Office of the Auditor General, 2008). Doyle cautioned that getting public participation

wrong frustrates all participants — government and the public —and when participation is not successful,

it takes time to rebuild trust for successful engagement (British Columbia, Office of the Auditor General,

2008). Moreover, citizen participation, including public participation in policy-making processes, is now

formally mandated by policy in many economically-developed countries (Martin, 2009). Martin also

emphasized that the public is now more demanding and knowledgeable about policy, so it is important to


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understand their needs and desires. Nurses are well positioned within and outside of government to

leverage their collective voice to ensure successful PPE policy at multiple levels. Thus, an examination of

the factors that influence PPE in healthcare policy is needed to better understand how PPE can be

supported and promoted within this context of healthcare system policy. This understanding may help

leaders in public service including nurse leaders, researchers, patients, and the public to develop more

effective policies to achieve improved governance accountability and increased diversity of perspectives

on policy issues.

Methodology

In this project, I followed the five specific stages of the integrative review methodology outlined

by Whittemore and Knafl (2005). These include (1) Problem Identification, (2) Literature Search, (3)

Data Evaluation, (4) Data Analysis, and (5) Presentation.

Stage 1: Problem Identification Stage

Although I have identified the problem of this project in the previous section, I also want to

emphasize that, despite the acknowledgement of the importance of public involvement in healthcare

policy, there has been very modest inquiry in policy and academic discourse into the purpose of PPE and

how the success or limitations of policy might be assessed (Mullen, et al., 2011). My intention in this

project was to be rigorous enough to provide insight into the current knowledge about PPE at the

healthcare system policy levels. This information may inform government policy makers, nursing, and

other healthcare leaders and researchers about PPE at various policy levels. My intention was also to

draw the attention of policymakers, nurses, and other healthcare leaders to the importance of PPE,

specifically the benefits, successes, challenges, and gaps in knowledge about PPE in healthcare system

policy.


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Stage 2: Literature Search Stage

Whittemore and Knafl (2005) advise that developing a strategy for literature searching is crucial to

avoid bias or inaccuracies in the selection of studies. In order to capture a maximum of eligible sources

for this integrative review I used the following databases: Cumulative Index to Nursing and Allied Health

Literature (CINAHL) database (Advance Search); Google Scholar; Medline Ovid; AbiInform Business

Source Premier (EBSCO); College of Registered Nurses of British Columbia (CRNBC) EBSCO; and

Web of Science. Whittemore and Knafl also advise using two to three search strategies. I used three

search strategies. First, I retrieved sources from the above databases using the following search terms:

engagement, patient and public engagement, patient and family engagement, client engagement, public

participation, citizen engagement, patient and public involvement, patient involvement, citizen

involvement, citizen participation, health policy, healthcare system, health research, and health reform.

These terms were the most common terms found in Kovacs Burns, et al.’s (2014) scoping review and the

interchangeable terms that I located (see Appendix A), which are described in a previous section of this

paper. Any of these terms were present either in the title or the abstract. Second, I also applied an

ancestry search approach to broaden the search of the topic. The ancestry search approach that I used was

inclusive of authors’ recommendations within the literature, and/or was obtained through the

bibliographies of articles meeting inclusion criteria for this review. Ancestry searching refers to

reviewing citations from earlier studies cited in references of published articles (Conn, et al., 2003).

Third, secondary sources such as grey literature, reports, white papers and documents from health

authorities, government, universities, and colleges were also searched using ProQuest, open grey, Grey

Matters, and government sites.


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Inclusion and Exclusion Criteria. After conducting the literature search and reviewing the

sources, only the sources that met the inclusion criteria were selected for this integrative literature review

project. The following inclusion criteria were applied: sources published between 2002 and 2015

(January-March), English only, and only those sources in which patient and public engagement occurred

within a healthcare policy context at either the regional, provincial, or national level. To keep the volume

of literature manageable, excluded sources were those published before 2002, and those that focussed on

healthcare provider engagement, patient and/or provider engagement supporting self-management, and

patient and public engagement focussed on unique specific diseases, conditions, or cultures. I also

excluded patient and public engagement policy sources focused on mental health and substance use, HIV

Aids, and methadone maintenance treatment. They were beyond the scope of my project and could be

considered for further research. A total of 3777 sources were found using the above listed databases. Six

articles were located via an ancestry search that met the inclusion criteria. Fourteen sources from the grey

literature met the inclusion criteria.

The abstracts, executive summaries, and/or introductions of the 3777 were reviewed to determine

whether they met the inclusion criteria of the review. Through this process, 317 sources were selected

based on the abstracts, executive summaries, and/or introductions. A second screening was conducted and

the full texts of the 317 sources were reviewed resulting in the selection of 39 sources that met the

inclusion criteria as illustrated in Figure 1.


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Figure 1. Identification of eligible studies

Stage 3: Data Evaluation Stage

Descriptive information on the selected sources. The 39 sources addressed existing knowledge

about patient and public engagement at the policy level. After critiquing all sources (explained in the next

section) 2 were screened out leaving 37 sources remaining for the integrative review. Although there

were 3 mixed method studies, there were no quantitative studies screened in for this review and this may

have some implications for future research. The 37 sources are listed in Figure 2.

3777 Sources

1st screening: abstracts, executive summaries/introductions and articles based on the inclusion criteria

3460 sources excluded 317 sources included

2nd

screening: full texts reviewed based on inclusion

280 sources excluded

39 sources included

Databases search using keywords

2 screened out leaving a total of

37 sources included


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Figure 2 Descriptive information of the thirty-seven selected sources

Grey Literature N=15

Government Reports or Documents: (n=6) British Columbia Office of the Auditor General, 2008; House of

Commons, The Public Administration Select Committee, 2013; House of Commons, The Health Committee,

2007; Patient and Public Experience & Engagement Team, 2011; Government of Newfoundland and

Labrador, n.d.; Directorate Office of the Chief Medical Officer, 2007

Government Policy and/or Procedures: (n=3) Lenihan, 2012; Capital Health, 2014; State of Victoria,

Department of Human Services 2006

Government Frameworks: (n=2) Canadian Institute for Healthcare Research, 2014; Queensland Government,

2012

Government Briefing Document: (n=1) Institute for Public Administration, MNP & Fasken Matineau, 2013

Government Handbook: (n=1) Sheedy, 2008

Evaluation Guide: (n=1) Warburton, Wilson & Rainbow, 2011

Government Action Plan: (n=1) Scottish Government, 2007

Qualitative Research N=17

Case Studies: (=6) Mullen, Hughes, Vincent-Jones, 2011; MacKinnon, 2003; Kovacs-Burns, Bellows,

Eigenseher & Gallivan, 2014; Ansari & Andersson, 2011; and Bovaird, 2007; McCaffery, K, J., Smith, S.,

Shepherd, H, L., Sze, M., Dhillon, H., Jansen, J., Juraskova, I., Butow, P, N., Trevena, L., Carey, K.,

Tattersall, M, H, N., & Barratt, A. 2011.

Literature Reviews: (n=2) Carmen, et al., 2013; Tritter & McCallum, 2006.

Systematic Reviews: (n=2) Oxman, Lewin, Lavis, & Fretheim, 2009; Martin, 2009.

Systematic Scoping Review: (n=1) Conklin, Morris & Nolte, 2012.

Historical: (n=4) Hogg, 2007; Church, Saunders, Wanke, Pong, Spooner & Dorgan, 2002; Martin, 2008;

Tritter & Koivusalo, 2013.

Ethnographic: (n=1) Meads, Griffiths, Goode & Iwami, 2007.

Comparative Study: (n=1) Legare, Stacy, & Forest, 2007.

Secondary Sources N=2 Literature Reviews: (n=2) Cavaye, 2004; Edgaman-Levitan, Brady, & Howitt, 2013

Mixed Methodology - Qualitative and Quantitative N=3

Comparative Quasi-experimental Design: (n=1) Abelson, Forest, Eyles, Casebeer, Martin & Mackean, 2007;

Randomized Trial Process Evaluation: (n=1) Boivin, Lehoux, Burgers & Grol, 2014.

Grounded Theory with quantitative analysis: (n=1) Thurston, MacKean, Vollman, Casebeer, Weber, Maloff,

& Bader, 2005.


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Quality and Relevance Assessment. I used and adapted two evaluation frameworks to evaluate

and score all of the 39 sources: first, Coughlan, Cronin, and Ryan’s (2007) framework for critiquing

qualitative research; and second, McCaston’s (2005) evaluation guide for critiquing secondary sources

including grey literature (in respective order see Appendix C and Appendix D).

I followed the steps in critiquing the qualitative sources outlined by Coughlan et al. (2007) for

qualitative research to evaluate each element assigning each question one point for a maximum total of 39

points and a minimum total of 26 points (see Appendix C). Similarly, I followed the steps in critiquing

the grey literature and secondary sources outlined by McCaston (2005) for secondary sources to evaluate

each methodological element assigning each question one point for a maximum total of 35 points and a

minimum total of 25 points (see Appendix D).

Scoring is recommended to help evaluate the rigor of the sources, rather than for the purpose of

exclusion from the review; moreover, as Whittemore and Knafl (2005) highlight, the score, whether high

or low, can be used to measure the magnitude of the source’s importance to the review in the analysis

stage. Based on quality scores there were only two sources that were excluded. Of the 37 sources that

were included, 20 were qualitative sources or mixed methodology that scored a minimum of 26 points

(moderate quality) and a maximum of 39 (high quality); 17 were secondary or grey literature sources that

scored a minimum of 25 (moderate quality) and a maximum of 35 (high quality). Therefore, 37 sources

were considered of sufficiently high quality to be included in this integrative review project.

Stage 4: Data Analysis

The main goal of the data analysis stage is to synthesize the evidence into an innovative

interpretation (Whittemore & Knafl, 2005). The data analysis stage is divided into four phases: Data

reduction, display, comparison, and conclusion drawing and verification (Miles & Huberman, 1994).


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Prior to outlining the four phases of the data analysis in the next section, I will explain two overarching

analytical approaches that I used throughout the integrative review project that helped inform and

influence my thinking from the research and sources in this review.

First, I used the Constant Comparison Method (CCM). The CCM and theoretical sampling form

the core of qualitative analysis in the grounded theory approach and in other types of qualitative research

(Boeije, 2002). Comparison is the main principle of the CCM analysis process and includes a multitude

of different aids (e.g., close reading and rereading, coding, diagrams, data matrices) to enable the principle

of comparison. I used a number of these aids to convert extracted data such as close reading and

rereading, coding, and construction of data matrices to support the principle of comparison. Second, I

used the contrasting notions of convergence and divergence as an analytical method to draw out the key

themes (Hewison, 2008). According to Hewison, the application of this analytical method is essential in

framing policy discussions and therefore pertinent to this project. Examples of how I applied this method

included reviewing the synthesis, implications and recommendations of each source to identify themes

and sub-themes (convergence); and, reviewing each individual source several times to identify broad

patterns (divergence) in applicability, similarities, and differences specific to PPE policy.

I compared similar data (point by point) and grouped categories in preparation for coding. Next,

the coded categories were compared in order to advance the analysis and synthesis processes.

Subsequently, data were extracted and coded from primary, secondary, and grey literature sources to

simplify, abstract, focus and organize data into an appropriate matrix to assist with my ability to compare

and theme data.

Phase 1: Data Reduction. Whittemore and Knafl (2005) posit that data reduction is a necessary

process in an integrative review because it will simplify, focus, and organize data into a manageable


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system. For this phase I summarized each of the sources included in the integrative review into a one

page document. The headings of each one page document included (a) number of the article, (b) author

and country, (c) subject of the article/source, (d) method and setting (regional, provincial, national), (e)

findings, (f) engagement levels (individual, community, and system), (g) limitations, and (h) implications

and recommendations. This approach assisted me with organizing and systematically comparing the

sources of literature on the components of healthcare policy focussed on patient and public engagement at

various jurisdictional and policy levels.

Phase 2: Data Display. The next step, data display, involved converting the extracted data from

individual sources into a display (see Appendix E) that further synthesized the data from multiple

primary, secondary and grey literature sources around levels of engagement, and levels of setting (e.g.,

regional, provincial, national). Data were displayed according to the same headings used in the one page

data summary explained in the data reduction section above. These displays enhanced the visualization of

patterns and relationships within and across primary, secondary, and grey data sources and served as a

starting point for interpretation of the relationships, applicability, similarities, and differences.

I developed a Mind Map (see Appendix F) of the Interconnections – Patient and Public

Engagement (PPE) Policy that was helpful in focussing on the multiple interconnecting elements that

influence patient and public engagement policy. The map is intended to graphically show barriers,

challenges, factors, and concepts that influence patient and public engagement policy. It also provides a

visible map to readers of this review.

Phase 3: Data comparison. To examine data displays (see Appendix G) of primary and

secondary sources and identify patterns, themes, or relationships, I grouped the factors influencing PPE

according to broad headings and sub-headings. I developed the broad headings and sub-headings for the


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influencing factors of PPE policy and by reading and re-reading primary, secondary, and grey data

sources and constantly comparing the patterns and relationships within and across the sources. In addition

to the number of the source and the citation, there were four broad headings and twenty four sub-

headings. These included (1) multiple stakeholders - influencing factors for PPE (patient/public;

provider(s)/organizations; academics/researchers/university; policymakers / administrators; and,

mechanism for ongoing PPE); (2) the reasons healthcare policymakers engage in PPE (improve

collaboration and/or knowledge sharing; accountability; reduce health delivery fragmentation or improve

effective health system; ensure equity; patient centered care; more diverse ideas, perspective, suggestions;

policies more accessible and responsive to citizens; better informed decisions; limited resources’

available; inform healthcare system policy; social capital; improved governance, accountability; citizens’

rights; and democratic legitimacy); (3) levels of engagement (community/organization; and system

partner, leadership co-design, shared decision making); and, (4) policy levels (policy at the regional,

provincial, county or national/federal level). I developed a coding scale (see Figure 3) to evaluate and

analyze the influencing factors for PPE policy from the research, secondary, and grey literature sources

and identify patterns, themes, or relationships. After I coded each source based on four broad categories

(and sub-categories) I compared influencing factors per geographic representation (See Appendix G) and

explored further characteristics such as patterns, themes, relationships, or conclusions.


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Figure 3 Five Point Coding Scale PPE/Policy Influencing Factors

Category Points

Awarded

Elements

PPE Influencing

Factors

4 (1 point

each)

Multi-pronged engagement with patients; provider(s)

organizations; educators/ researchers; policymakers/ health

administrators

5 points

awarded for

mechanism

Mechanism for ongoing patient and public engagement

Reasons healthcare

policy makers are

engaging patients

and the public

Maximum

14 points

(one point

each)

Improve collaboration, knowledge sharing and accountability,

reduce health delivery fragmentation, ensure, equity, patient

centered care services, effective healthcare system. More

diverse ideas, perspectives, suggestions, policies more

accessible and responsive to citizens, better –informed

decisions, with limited resources available. Inform healthcare

systems policy: social capital, improved governance

accountability, citizens’ rights, and democratic legitimacy

Levels of

Engagement

3 points Level of Engagement at the Community/Organization

(e.g., organizational design, governance

5 points Level of Engagement at the System Partner (e.g., leadership,

co-design, shared decision making)

Policy Levels

(Legislation- Legs;

Regulations – Regs)

3 points Policy at the Regional level

5 points Legs/Regs Policy at the Provincial level

5 points Legs/Regs Policy at the National/Federal level

Phase 4: Conclusion Drawing and Verification. Whittemore and Knafl (2005) state that this

final phase of data analysis includes a shift from efforts to interpret the description of patterns and

relationships to an elevated level of abstraction, thus allowing findings to be generalized. This final phase

comprised reviewing data, isolating patterns and processes, and identifying the common themes and

differences among the elements, which highlight the challenges and successes PPE policy (Whittemore &

Kanlf, 2005). Moreover, this process is a gradual elaboration of a small set of generalizations that

encompasses a subgroup of the entire integrated review. Miles and Huberman (1994) suggest conclusions

or models are developed via a continual revision process to help ensure the inclusion of as much of the


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data as possible. Additionally, in order to ensure accuracy, this stage included validating the conclusions

with all of the 37 sources in my integrative review and reading and re-reading sources.

In the final part of the data-comparison stage of my integrated review I synthesize the significant

elements of the conclusions of each subgroup into an integrated summation of the elements that influence

patient and public engagement policy (Whittemore & Knafl, 2005)

Stage 5: Presentation. The final phase of the integrative review process included the presentation

of the review findings and discussion section. The final phase has five sections. First, I summarize the

findings of my analysis from sources selected for this literature review. Second, I identify an appropriate

theory that will help interpret the findings. Third, I discuss the integrative review findings that help to

provide a better understanding of the existing knowledge about patient and public engagement within the

context of healthcare system policy. Fourth, I present an integrated framework for policymakers, public

services, and nurse leaders specific to critical aspects of patient and public engagement healthcare system

policy. Lastly, I present the strengths and limitations of the study and recommendations for future

research and nursing leaders.

Findings

The findings of the integrative review for this project show that there are benefits for government

and public citizens in PPE policy. There are also challenges and specific roles for government to play in

promoting or facilitating PPE policy. Three themes emerged from the findings reviewed in this project.

The three themes are presented below to help illuminate the findings: (1) benefits of PPE policy (2)

challenges for policymakers (3) governments’ role in PPE policy. I will describe the first theme, the

benefits of PPE policy, and then talk about the other themes in the order listed above.

Benefits of PPE Policy. The first theme from the findings, benefits of PPE policy, shows that both


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government policy makers and public citizens benefit from PPE in policy making. I will explain the

benefits with examples to show why they are perceived as benefits.

From a public service perspective, improved governance is seen to be a key benefit of PPE in the

policy process. Before I discuss improved governance I will provide a very brief explanation to set the

context about why governance within public service needs to improve.

Traditionally, healthcare system policy within the public sector has been a top down driven

process reserved for policy-makers and high level decision makers. More recently, a strategic direction in

the policy process incorporates a more prominent role for users and other members of the public in

healthcare policy, decision making, and outcomes and uses a top-down – bottom-up driven process

(Bovaird, 2007; British Columbia Office of the Auditor General, 2008; Capital Health, 2014; Legare et

al., 2007; Lenihan, 2012; Oxman, et al., 2009; Sheedy, 2008; Tritter & McCallum, 2006). The main

premise of the top down and bottom up combined approach versus a top down approach to policy making

in the context of PPE is that citizens and the public are viewed as full interactive partners in governance

instead of being seen in the traditional view of passive recipients of healthcare policies and services

(Lenihan, 2012; Legare, Stacy, & Forest, 2007).

One of the main benefits of effective PPE policy is improved democratic legitimacy, which can

improve governance (Warburton, et al., 2012). Democratic legitimacy can help to validate accountability

and citizen rights, which is a reason for government(s) to embed PPE in the policy process. Some

examples may help to provide further understanding. The NHS Scotland’s Better Health Better Care

Action Plan describes their aim to have a more inclusive relationship with the Scottish people in which

members of the public are affirmed as partners rather than recipients of care. The ownership and

accountability of the health system is shared with the Scottish people and the NHS staff, and the people of


22

Scotland are co-owners with both rights and responsibilities. Further, in both Scotland and Ireland’s

NHS, collaborative and integrated approaches have the benefit of strengthening public ownership in the

culture of their healthcare systems (Scottish Government, 2007; Directorate Office of the Chief Medical

Officer, Northern Ireland, 2007).

Benefits of engaging citizens in policy or program development can, from the public’s point of

view, increase citizens’ sense of responsibility and understanding for complex issues (Sheedy, 2008).

From the public service point of view, engaging citizens in policy or program development can be an

important mechanism to clarify citizen’s values, needs and preferences, allowing public servants to

understand how the public views a public concern and what is most important to them, what information

the public needs to understand, and how to best present or speak about an issue (Sheedy, 2008).

Similarly, public engagement in policy making enables decision makers in the health system to address

the right issues, help design programs, and improve policy implementation (Kovacs-Burns, et al. 2014;

Oxman, et al., 2009).

An important benefit from the Patient and Public Involvement (PPI) policy perspective is that

peoples’ experience of services and the quality and safety of care is changed. Further, PPI can also

increase service responsiveness and accountability to local communities and the wider population by

involving them in the deliberations and decisions about service provision. Thus, staff morale and

satisfaction can also improve when staff realize they are providing a responsive service that is valued by

individuals and appreciated by the wider public (Directorate Office of the Chief Medical Officer,

Northern Ireland, 2007). Furthermore, the House of Commons Public Administration Select Committee

(2013) reported that engaging the public and experts in debates about policy and in the policy-making


23

process and establishing new relationships where citizens become valued partners lead to new thinking

and proposed new solutions to challenges.

In summary, from the perspective of policy makers, government leaders, patients and the public

there is a range of PPE policy benefits. The range of benefits from the policy makers and government

leaders’ view includes improving democratic legitimacy, governance, policy implementation and staff

morale. The range of benefits from the patients and the public view includes improving peoples’

experience with the healthcare system and knowledge of complex issues, increasing citizens’ sense of

responsibility, and incorporating citizen’s values, needs and preferences in the policy process.

Challenges for Government(s) and Policymakers. The findings in this integrative review show

there are many challenges for government(s) and policymakers related to successful PPE policy. The

findings were organized around three main challenges. One of the challenges is that “doing” PPE wrong

can have multiple negative repercussions. The second challenge that emerged from the findings related to

internal barriers within the government environment. The third challenge emerged from PPE policy and

legislation that appeared to have decreased the engagement processes and may have negative outcomes

from the public point of view. The three challenges will be discussed in this section.

When government(s) and policymakers “do” PPE incorrectly, the negative repercussions from the

public can be significant. I will discuss three main points to set the context of this challenge. First,

government PPE policy is typically vulnerable to accusations about trying to manipulate the public using

cynical efforts to garner support rather than enhancing a participatory democratic process (Hogg, 2007).

Second, autonomous mechanisms for PPE (e.g., Community Health Councils in the NHS, UK) were set

up by the government but were later criticized for the Councils’ inconsistent and variable performance

due to the lack of accountability. Third, when the government “gets” PPE wrong there is a further loss of


24

public good will and the perception of wasted public resources (British Columbia, Office of the Auditor

General, 2008; Hogg, 2007). Moreover, where there is engagement that is not done correctly by

government (e.g., a decision has already been made so there is no need for public engagement) public

cynicism towards government generally ensues. Engagement done wrong frustrates everyone and takes a

significant amount of time and effort to rebuild public trust (British Columbia, Office of the Auditor

General, 2008). Similarly, the Government of Newfoundland and Labrador (n.d.) caution that the costs

associated with not conducting public engagement appropriately may arise from actions needed to

respond or mitigate public lobbying, lack of buy-in from stakeholders, or loss of credibility with the

public.

The potential negative outcomes of “doing” PPE incorrectly in the government policy process that

are described above should be of concern to current government policymakers and decision makers.

Future research in this area may warrant attention, particularly the cost of “doing” PPE incorrectly in the

government policymaking process or not doing PPE at all. There may also be more research needed to

confirm that PPE improves governance, or has other benefits.

Next, I will discuss the internal government challenges that I identified in my review findings.

These challenges were located in the intra-organizational (within government) context. Policymakers are

required to manage the policy process and achieve political objectives within intense, pressured, and

uncertain timelines generally due to overriding urgent priorities within government (Church, et al., 2002).

In my previous experience as a government policy analyst and also within the scope of my nursing

practice as the provincial director of Patients as Partners strategy in the B.C. Ministry of Health, I found

that urgent competing strategic priorities within government are routine in this environment and attending

to required legislative actions would over-ride other services. Adding to this complex system is the policy


25

process itself that is neither rational nor linear; to be more precise it is influenced by a multitude of

internal and external factors (Ableson, et al., 2007). Many governments, such as Australia, UK, and

provinces and territories in Canada, have moved toward engaging public and community in policy

processes. The question or challenge is - how can government(s) create a more flexible system to allow

for effective PPE within a “pressure cooker” environment (Cavaye, 2004)? The following examples from

the findings may provide some answers and will be discussed in the next section.

I will discuss the context of the third challenge then I will explain the specific criticism. The third

challenge from the findings about policy and legislation emerged from the United Kingdom (UK) NHS

experience. This may have been because Patient and Public Involvement (PPI) and/or patient led health

services in the UK have existed since 1974 (Hogg, 2006). Thus, the focus on UK NHS legislation in the

research may have emerged because of their extensive experience specific to PPI policy and legislation

over a longer period of time than other jurisdictions. UK legislation and policy was changed from

including extensive PPI to a narrower scope with less inclusive PPI and this change was one of the main

challenges that emerged in this review (House of Commons, Health Committee, 2007; Public and Patient

Experience and Engagement Team, 2011; Tritter & Koivusalo, 2013). Nevertheless, other countries (such

as Canada) with less patient and public engagement type legislative and policy experience may not have

experienced challenges yet. However, Canada and other countries could be well positioned to learn from

the extensive NHS experience.

The main criticism found with the UK policy/legislative change was a shift in direction that

involved narrowing the scope of public involvement to two specific areas. First, individual involvement

regarding choice about care; and second, access to a mechanism for advocacy regarding complaints (e.g.,

healthcare services experience was unsatisfactory). Whereas previous legislation included extensive


26

public involvement and consultation in the health system policy process at multiple levels, new legislation

appears to have reduced engagement opportunities. The shift in policy direction is a challenge for

policymakers because of negative public accusations about government rhetoric regarding their pledge

“that patients must be at the heart of everything we do, not just as beneficiaries of care, but as participants,

in shared decision making” (Tritter & Koivusalo, 2012, p. 118).

Findings from this review are that there are challenges for government(s) and policymakers not

only to enact PPE legislation and policy but also to implement PPE correctly throughout the process.

Notwithstanding, the potential negative outcomes from these challenges and barriers may also be seen as

motivation for governments and policymakers to “do” PPE correctly. Further, despite the aforementioned

challenges there are also positive examples of PPE government policies and legislation that were

discussed in the first section of these findings.

Government(s) Role in PPE Policy. The government(s) role in PPE policy is the third theme that

emerged in the findings. There were two main points in this theme: first, provide leadership and second,

ensure there are formal PPE mechanisms, accountabilities, and responsibilities. I will discuss these points

beginning with leadership.

To set context specific to government leadership in PPE it may be helpful to state, at the outset,

that one of the leadership roles of government in healthcare is to set direction through legislation,

regulation, and policies for service delivery partners such as health authorities. For the purpose of this

section I will use the overarching term policies to refer to legislation, regulations, and policies.

Findings in this review show a range of diversity in PPE policies from detailed multiple

requirements to very minimal requirements. Examples of multiple requirements include Canadian PPE

policies enacted in Nova Scotia, Ontario, Manitoba, and the Yukon. These policies require regional health


27

organizations to plan and implement thorough engagement and consultation processes with the public in

establishing health priorities and/or plans (Institute of Public Administration of Canada, et al., 2013). In

contrast, a minimal policy (related to patient and community engagement) enacted in British Columbia

(B.C.) only requires regional health organization boards to conduct board meetings that are open to the

public – unless there are mitigating interests that outweigh public disclosure (Institute of Public

Administration of Canada, et al., 2013). Another example of government leadership that provides

extensive direction, accountabilities, and expectations in PPE policy is from Australia. The Victoria State

Government Doing it with us not for us participation policy describes in detail the actions, rationale,

objectives, priorities, outcomes, and the expectation of collaboration (people working together) to achieve

better health and better healthcare through public participation (Department of Human Services, Victoria

Government, 2006).

These policy examples are from provincial or state regions, and it is important to realize that the

NHS UK example mentioned in the previous section is from a national perspective. Thus, it is difficult to

make comparisons between provincial/state versus federal, particularly when in Canada, the provinces

have jurisdiction over healthcare policies including PPE.

The second point that emerged in the government leadership role theme is about ensuring there are

formal PPE mechanisms, clear accountabilities, and responsibilities. It may be helpful to first explain

what is meant by PPE mechanisms. PPE mechanisms in this context mean structures such as

organizations, networks, forums, and health regions that usually have accountabilities and responsibilities

to provide healthcare services. In Canada, the provinces of Alberta, Quebec, and, Ontario are required by

provincial governments to establish PPE mechanisms. For example, in Alberta, the engagement

mechanisms are called health advisory councils; in Quebec, consultation forums; and in Ontario, Local


28

Integrated Health Networks (LHINs). The people and organizations involved are held accountable and

responsible for engaging representatives and organizations that reflect the population and are also held

responsible for involving the public in local health system planning on an ongoing basis.

It is important for government leaders to recognize the need for involving diverse stakeholders in

the policy process. Currently, the need to involve diverse stakeholders (e.g., patients, public and

communities) in solutions to complex problems is being recognized by governments (Martin, 2008).

Some governments have radically reinterpreted the policy making process from an excluded process

reserved for policy makers and top decision makers to a process whereby negotiated outcomes involve

many interacting policy systems and co-production among citizens and multiple stakeholders (Bovaird,

2007).

Leadership from an internal government perspective emerged as important in the findings and will

be discussed next. Decision makers and leaders in government organizations have a critical and central

role within which they operate in shaping public participation (PP) implementation processes (Abelson, et

al., 2007). Boviard (2007) proposed that a new type or role of public service professional is needed (e.g.,

coproduction development officer) who can act internally within government and externally with partners

to co-produce strategic direction of the system. Specifically, expertise in partnering (e.g., or co-

producing) is needed within and external to government between traditional service professionals, service

managers, and the political decision makers who shape the strategic direction of the service system.

Government leaders have substantially increased Public and Patient Involvement (PPI) in policy

decisions and have invested significant public resources in setting up long-term mechanisms (local

partnerships) to one off events such as citizens’ juries (Ansari & Andersson, 2011). In Capital Health

(2014) in Nova Scotia, government leadership is required to report back to the public and participants in a


29

timely manner to ensure accountability and compliance is aligned with their policies. Government

leadership in Scotland and Ireland’s NHS, use a collaborative and integrated approach that includes

strengthening public ownership in the culture of their healthcare systems (NHS Scottish Government,

2007; Directorate Office of the Chief Medical Officer, Northern Ireland, 2007).

In summary, the findings in this integrative review of the published and grey literature provided a

glimpse of the complexity of PPE in health care policy processes. The findings depicted a range of

benefits of PPE policy and various challenges and roles for policymakers to consider. The discussion

section introduces a theory that I chose to help interpret my findings.

Discussion

The discussion section is presented in three main parts. In the following two parts (1) identify and

provide a rationale for choosing an appropriate theory to interpret my findings and introduce the theory

and its four concepts; and (2) discuss my findings and how they are situated within the context of the

Services-Management and Service-Dominant (SM and SD) Theory and the framework that I developed.

Theory Identification, Introduction to the SM and SD Theory and Four Concepts

In the first part of the discussion section I will discuss two points. First, I will discuss the process

of identifying and the rationale for choosing the SM and SD theory; second, I will introduce the theory

and its four concepts.

Process of Theory Identification and Selection. To interpret and discuss my findings, I

considered using complex adaptive systems theory, organizational readiness for change theory, and

services management and service-dominant theory because aspects of each of these are related to my

findings. I selected the services management and service-dominant (SM and SD) theory (Osborn, Radnor

& Nasi, 2012) as the most appropriate framework for this integrative review for the following reasons.


30

The rationale for selecting this theory was that the theory focussed on citizen and public engagement

throughout the process of policy development. The other two theories are more general theories are more

general theories not specific to the topic of PPE. Thus, SM and SD seemed most appropriate.

Additionally, I found the terminology (e.g., titles of the concepts) to be easily adapted to align with my

review findings and the APL competencies (see Table 1).

Introduction to SM and SD Theory and Theoretical Concepts. This theory was developed

because Osborne, et al. (2012) believed that traditional public management theory was outdated, what was

needed was a theory based on the current reality of public service delivery. The origins of public

management theory evolved conceptually from management research conducted in private manufacturing.

However, most public services such as health care, education, social services are all services rather than

manufactured “public products” – thus they are generally services to “support and enable the delivery of

intangible and process-driven public services” (Osborne, et al., 2012, p. 136). Moreover, traditional

public management theory is based on intra-organizational processes (e.g., internal processes), when the

current reality of public service delivery is based on inter-organizational processes (e.g., cross-sectoral

relationships and multiple systems of public service delivery).

The four main concepts in the SM and SD theoretical approach are (1) strategic orientation of

Public Service Organizations (PSOs), (2) role of marketing in public services, (3) co-production of public

services, and (4) the operational management of these services. I will briefly describe each concept.

The strategic orientation concept situates both the citizen and the user as key stakeholders of the

public policy and public service delivery processes whereby their engagement in the processes adds value

to both (Osborne, et al., 2012). Moreover, strategic orientation is also about understanding the needs and

expectations of citizens and service users. From a service-dominant approach, Osborne et al. (2012) posit


31

that strategic orientation requires citizen engagement and user involvement at all phases of a (public)

service lifecycle – including policy development. Furthermore, PSOs in this context incorporate public

engagement as a core dimension in strategic orientation and implementation. Further, as a result of the

interactivity between PSOs and the public, valuable information is generated to support policy

formulation and implementation in the current and future state.

The second concept, the role of marketing public services is twofold. First, a marketing approach

helps to transform the intent of public service strategy into a commitment or promise – in other words,

fulfilling public service commitments. Second, what is essential about the role of marketing is that the

intent of a marketing approach is to maintain collaborative relationships and build trusted partnerships

between service users and PSOs (Osborne, et al., 2012).

The third concept, co-production, situates the service user experiences and knowledge at the heart

of effective public service design and delivery (Osborne, et al., 2012). For example, the service user

knowledge is encouraged and used to improve or develop new or existing services (Osborne, et al., 2014).

The concept of coproduction does not mean that PSOs and staff are excluded – rather, the insight(s) from

both user and public service is combined.

The fourth concept, operations management, focuses on Relationship Management (RM) as an

imperative. RM is described as increasing trust in on-going relationships and demonstrating genuine

interest in the welfare of others (Osborne et al., 2012). The fourth concept also includes quality

improvement methodologies such as “lean.” Lean is an operational management methodology originating

from the Toyota Motor Corporation and has been implemented into health services. Lean methodology

seeks to reconfigure internal organizational processes to reduce waste and improve internal efficiencies

(Osborne et al., 2012). Lean reform has been implemented in healthcare services and public services and


32

achieved internal efficiencies. However, lean reform has failed in terms of meeting external effectiveness

and meeting the needs of external service users, citizens, and local communities (Radnor & Osborne,

2013). Osborn et al., (2014) argue “lean” continuous process improvement methodology is preoccupied

with internal measures of efficiency and satisfying internal customers rather than including external public

and value. Although there may be other quality improvement methodologies that include external

efficiencies and effectiveness this is outside the scope of this review.

This brief introduction to the SM and SD theory and its four theoretical concepts provides a

summary of the main points that are related to my review findings. Examples from the findings related to

the concepts included engaging citizens at all phases of policy development, maintaining collaborative

relationships and building partnerships, using citizen knowledge in co-producing improved public

services, and ensuring that there are ongoing relationships between internal government and organizations

external to government. I have re-named the four concept titles introduced above to align better with my

findings in this review. I also maintained the intent of each concept as described above and as outlined by

Osborne et al. (2012). The four concept title changes included, strategic orientation re-titled PPE in

policymaking; the role of marketing public services renamed public service collaboration; co-production

changed to PPE policy implementation; and operations management renamed interactive leadership for

PPE.

Discuss Findings, SM and SD Theory, and Introduction to the Framework.

In the second part of the discussion section I review the findings in the context of the SM and SD

theory and present the framework that I developed entitled, Integrated PPE Policy Framework for Public

Service and Nurse Leaders, hereafter referred to as the Framework (see Table 1). This section will be

presented in four parts that correspond with the four concepts of the theory, common influencing elements


33

of PPE (identified in Appendix G) and, themes and findings from this review. I will discuss the

relationship of these concepts to the competencies from the University of Victoria, APL Masters of

Nursing Program in the significance of the findings section that follows. As previously mentioned I

changed the titles of the four concepts. The new titles, as reflected in Table 1 are PPE in policymaking,

public service collaboration, PPE policy implementation, and, interactive leadership for PPE policy.

Table 1. Integrated PPE Policy Framework for Public Service and Nurse Leaders

# Theory Concepts

Theory Elements

PPE Policy

influencing

factors from the

findings

PPE Policy Themes

Examples from the

findings

University of Victoria: Masters of

Nursing Advanced Practice

Leadership

Competencies and Indicators

1. PPE in

Policymaking

Government Role

1.0 Understand the

needs and

expectations of

citizens and service

users

Improve

collaboration

and knowledge

sharing

Recognize that the

immense knowledge

gleaned from public will

lead to better policies and

decisions will strengthen

democracy.

3. Advances professional nursing

practice. (Nurses/Nursing Sphere)

3.1 Role models relational integrity,

ethical component and a commitment

to scholarly inquiry and lifelong

learning.

1.1 Users as key

stakeholders

Patients/Public

Engagement

Legislation, regulation or

policy requirements for

health authority

accountability to

demonstrate community

consultation.

1. Demonstrates knowledge of and

engagement with leadership theories.

1.1 Articulates possibilities for

nursing leadership in 5 spheres

of influence: patient/client, nurse

and practice, interprofessional/

inter-sectoral health,

organizations, and health

systems/health policy. 1.2 Engagement adds

value to policy and

service delivery

processes

Policies /

Service delivery

process is more

accessible

and/or

responsive to

citizens

Provides government with

justification for public

spending and

strengthening the publics’

voice in decisions and

health service deliver.



1.3 Analyzes the influence of the

social, political and economic

environment and prominent

discourses / practices (such as

corporatization) on health care,

health policy, and nursing

practice.


34

1.3 Users involvement

at all phases of

policy cycle

Inform

healthcare

system policy

throughout

policy process

PPE enables decision

makers to design policy

and programs tailored to

public needs; achieve

better results; and validate

outcomes.

3. Advances professional nursing

practice. (Nurses/Nursing Sphere)

3.2 Creates a culture of learning in a

focused area of nursing practice that

fosters a spirit of inquiry.

2. Public Service

Collaboration

Concept

Benefits and strategies of

PPE policy

2.0 Fulfilling public

service

commitment(s)

Governance,

accountability

and democratic

legitimacy,

mechanisms for

ongoing PPE

Gain valuable knowledge

through public

engagement that can lead

to better policies and

decisions and democracy.

4. Fosters collaborative working

relationships with diverse

stakeholders. 4.1 Promotes

interprofessional and inter-sectoral

communication to enhance patient and

staff safety, foster client-centred,

ethical and culturally safe practices,

and build collaborative teams and

coalitions.

2.1 Maintaining

collaborative

relationships

Improve

collaboration,

knowledge

sharing

Include actions to

strengthen public

ownership by embedding

patient experience

information in the system.

4.2 Communicates within nursing,

inter-professionally, and across sectors

in a timely, frequent, accurate,

succinct manner to create a climate of

shared goals and mutual respect.

2.2 Building trusted

partnerships

System Partner

(e.g., leadership,

shared decision

making, co-

design)

Challenge for

policymakers Recognize

the impacts of not

engaging the public such

as increased costs due to

stakeholder lobbying and

loss of public credibility.

4.3 Participates in, or leads, diverse

teams to improve client experiences or

outcomes and to initiate and/or support

evidence-informed policy changes.

2.3 Co-creating joint

improvement

More diverse

ideas /

perspectives/

Suggestions

Government Role

Acknowledge the value of

the engagement process.

4.5 Articulates an advanced nursing

perspective to diverse stakeholders

(colleagues, decision makers, public,

etc.) to address client needs, support

nursing decisions, and optimize

health-care provision.

3. PPE Policy

Implementation

Concept

Government Role in PPE

Policy

3.0 Innovation includes

seeking user

service knowledge

Better informed

decisions,

communication,

Incorporate shared policy

agenda setting to ensure

that policy proposals and

2. Demonstrates leadership abilities

in an area of nursing practice or

health care delivery. (Patient/Client


35

to improve or

develop services

and more

diverse ideas.

decisions are co-jointly

created.

Influence) 2.1 Conducts systematic

and comprehensive assessments based

on the integration of theory, evidence,

research, and differing perspectives, as

a foundation for advanced reasoning

and/or decision-making.

3.1 Puts service user

experiences at the

heart of public

service design

Patient centred

care and

Citizens’ Rights

Challenge for

policymakers

Challenge for government

to incorporate PPE into a

policy process.

5. Fosters innovation to create

effective work environments

(Organizations Sphere) 5.6

Participates in the design and

implementation of new models for

nursing and/or healthcare delivery in

an area of practice.

3.2 User is at the heart

of the process

(social inclusion)

Patient centred

care


Policy Ensure PPE as a

key strategic direction for

ensuring decisions and

priorities reflect the needs

of the citizens.



1.1 Articulates the possibilities for

nursing leadership across 5 spheres of

influence: patient/client,

nurses/nursing practice,

interprofessional/ inter-sectoral health,

organizations, and health systems /

health policy.

4 Interactive

Leadership for PPE

policy


Policy

4.0 Interactivity

between internal/

external

stakeholders:

public service

transformation

Engage multiple

stakeholders at

all levels of the

policy process.

Ensure public is involved

in forming legislation for

durable decision-making.

Public’s are typically more

supportive of government

decisions if they know

their views were

considered.

6. Demonstrates leadership within

complex health systems (Systems/

Policy Sphere)

6.6 Participates in the development

and implementation of institutional,

local, provincial, or national health

policy.

4.1 Relationship

Management

Social Capital,

Democratic

Legitimacy

Challenges for

policymakers

Efforts need to be made to

raise patients’ awareness

about PPE benefits, and

support patients increasing

role in leadership.

4. Fosters collaborative working

relationships with diverse

stakeholders. (Interprofessional/

Inter-sectoral Sphere) 4.2

Communicates within nursing,

interprofessionally, and across sectors

in a timely, frequent, accurate,

succinct manner to create a climate of

shared goals and mutual respect.

Adapted from the Services Management and Service-Dominant Theory (Osborne, et al., 2012)


36

(i) PPE in Policy Making Concept. The main premise of this concept is engaging the patients

and public in decision making throughout the policy process. I will first list the four elements in this

concept and then discuss relevant findings from this review. The four elements are (1) understanding the

needs and expectations of citizens and service users, (2) situating service users as key stakeholders, (3)

recognizing that engagement adds value to policy and to service delivery processes, and (4) involving

service users in all phases of the policy process. PPE in policymaking concept is congruent with the

findings in this review and I believe is very relevant to understanding how healthcare policy leaders and

decision makers support and value PPE in healthcare policy.

The first element in this concept is understanding the needs and expectations of citizens and

service users. The findings show that the PPE process in policy provides an effective way for

governments to better understand the needs and expectations of citizens and service users. Moreover,

governments can utilize the immense knowledge gleaned from the public through engagement for

developing better policies and decisions and to strengthen democracy (Department of Human Services,

Victoria Government, 2006; Edgaman-Levitan et al. 2013; Institute of Public Administration of Canada et

al. 2013; Kovacs-Burns et al. 2014; Sheedy, 2008).

The second element is situating service users as key stakeholders. The findings indicate that

governments are starting to hold to account health authorities, who are responsible for delivering

healthcare services, for implementing community consultation processes in the development of health

plans, strategic directions, and policy development (Directorate Office of the Chief Medical Officer,

Northern Ireland, 2007; House of Commons, Health Committee,2007; House of Commons Public

Administration Select Committee, 2013; Institute of Public Administration of Canada et al. 2013; Public

and Patient Experience and Engagement Team, 2011; Scottish Government, 2007). These processes


37

situate service users and the public as key stakeholders at multiple levels and are an example of how

policy leaders within government support PPE in healthcare policy.

The third element is recognizing that engagement adds value to policy and to service delivery

processes. The findings show that by engaging citizens and the public in the policy process it can lead

government decision makers to make better decisions (Ansari & Andersson, 2001; Bovaird, 2007;

Cavaye, 2004; Lenihan, 2012; Scottish Government 2007; Sheedy, 2008). For example, government

decisions makers may not understand potential social or ethical implications of their decisions and by

engaging such populations they would have a greater understanding, thus leading to better informed

decisions (Sheedy, 2008).

The fourth element is involving service users in all phases of the policy process. The findings

indicate that by embedding PPE throughout the phases of the policy process, health system decision

makers are likely to address the right issues in an appropriate way and design programs, policy and

planning activities that closely align with the public needs (Kovacs-Burns, et al, 2014; Directorate Office

of the Chief Medical Officer, Northern Ireland, 2007; Warburton, et al., 2012).

In summary, the PPE in policy making concept is about PPE providing effective ways for

governments to understand the publics’ healthcare needs and expectations. Findings show that it is

important for government(s) to support PPE processes to ensure the user and/or public is a key

stakeholder at multiple levels throughout the policy process. The findings show that the benefits of PPE

policy included government leaders having a more comprehensive understanding of the issues about

populations that are affected by decisions and as a result lead to better informed decision making. Finally,

embedding PPE in the policy process healthcare decision makers may develop policy that is well aligned

with the public needs.


38

(ii) Public Service Collaboration Concept. The main premise of this concept is fostering

collaborative working relationships with diverse stakeholders (including interprofessional and inter-

sectoral spheres). Developing collaborative ongoing relationships between government and organizations

and/or health users helps to develop trust and impact strategic decision making (Osborne, et al., 2012).

The four elements in this concept are building trusted partnerships, maintaining collaborative

relationships, co-creating joint improvements, and fulfilling public service commitments.

The findings in this review highlighted the importance of partnerships between the public and the

government public service in co-producing effective health service policy (Bovaird, 2007; Carmen, et al.,

2013; Cavaye, 2004; Department of Human Services, Victoria Government, 2006; Directorate Office of

the Chief Medical Officer, Northern Ireland, 2007; House of Commons Public Administration Select

Committee 2013; Lenihan, 2012; Scottish Government, 2007; Oxman, et al., 2009; Tritter & McCallum,

2006). Moreover, citizens and the public are viewed as partners who are “situated as essential

stakeholders of the public policy and public service delivery processes and their engagement in these

processes adds value to both” (Osborn, et al., 2012, p. 143).

Findings show that public engagement, building partnerships, and collaboration are required to

solve complex issues in healthcare policy (Directorate Office of the Chief Medical Officer, Northern

Ireland, 2007; Lenihan, 2012; Scottish Government., 2007). Neither governments nor any one

organization alone can provide effective solutions to healthcare in isolation. Lenihan (2012) suggests that

governments’ current multi-stakeholder environment requires high levels of collaboration across

organizational boundaries. The following example from the findings in this review show how

governments incorporate engagement in policy guiding documents. In Northern Ireland, the Department

of Health, Social Service and Public Safety circular document entitled, Guidance on Strengthening


39

Personal and Public Involvement (PPI) in Health and Social Care provides specific direction for leaders.

The direction outlined in this document guides decision makers in improving the quality and effectiveness

of user and public involvement as an integral part of good governance and supporting a more patient and

user-centred health and social care system (Directorate Office of the Chief Medical Officer, Northern

Ireland, 2007). More specifically, the Guide outlines core values and principles, evaluation,

accountability and assessment processes, action planning, reporting and performance monitoring.

In summary, the public service collaboration concept illustrates the importance of fostering

relationships with multiple stakeholders throughout the policy process. The findings in this review

support the elements such as co-creating joint improvements, buildings trusted partnerships, and

maintaining collaborative relationships. The findings also show that no one organization alone can

provide effective healthcare solutions and fostering collaborative partnerships between the public and

government are required to solve complex issues in healthcare policy Neither governments nor any one

organization alone can provide effective solutions to healthcare in isolation. The findings also show that

patient and public involvement are integral to good governance.

(iii) PPE Policy Implementation Concept. The central theme of this concept is engaging service

users in a responsive and respectful way in policy processes to generate innovation, new ideas, and, better

informed decisions. The three elements in the PPE policy implementation concept are innovation includes

seeking user service knowledge to improve or develop services; put service user experiences at the heart

of effective public service design; and the user is at the heart of the process.

One of the findings shows that including user service knowledge for healthcare improvements is

central to the Strategy for Patient Oriented Research (Canadian Institutes of Health Research, 2014).

More specifically, the Patient Engagement Framework that was developed by the Strategy for Patient


40

Oriented Research embraces patients as the heart of this strategy, by committing to involve the patient(s)

in all levels as partners to build a sustainable accessible and equitable health care system and positively

impact the health of Canadian citizens.

Also in Canada, the province of Nova Scotia’s Capital Health (2014) Engagement Policy (CH 04-

080) identifies citizen engagement and person-centered care as a key strategic direction for ensuring

decisions and priorities reflect the needs of the citizens. The policy document also provides expected

outcomes as a result of the implementation process such as leaders and staff accountabilities, increased

transparency, and public accountability. The Nova Scotia policy example reflects the elements in this

concept by developing a strategic direction to ensure the service user experiences are at the heart of

effective public service design and process – in other words, patient-centred care.

In summary, the core premise of the PPE policy implementation policy concept core premise is

about ensuring that government puts the service user and the public at the heart of policy and service

processes. This involves governments sharing the policy agenda in setting policy proposals that are co-

jointly created and implemented.

(iv) Interactive Leadership for the PPE Policy Concept. The core premise of this concept is

fostering interactive leadership between multiple internal and external complex systems to improve

relationships and experience with the healthcare system. Relationship management between diverse

groups of stakeholders is also a key element.

The findings from the review show that the need to involve diverse stakeholders (e.g., patients,

public and communities) in finding solutions to complex problems is being recognized by governments

(B.C. Office of the Auditor General, 2008; Boviard, 2007; Edgaman-Levitan, Brady & Howitt, 2013;

Martin, 2008; Sheedy, 2008). Historically, the policy making process has been reserved for policymakers


41

and government leaders. As previously mentioned, however, this process has been transformed from one-

way processes for policy makers and top decision makers to a process that includes negotiated outcomes

involving many interacting policy systems and coproduction among citizens, the public and multiple

stakeholders (Bovaird, 2007). The Global Health Partnership Framework describes this policy

development process change by emphasizing the importance of building relationships between

individuals, families, communities, healthcare professionals, and policymakers in areas such as research,

community health, organizational design and governance and public policy (Edgaman-Levitan, Brady &

Howitt, 2013).

Citizen engagement can require a shift in organizational or departmental cultural conceptions of

what citizens can bring to a policy process (Sheedy, 2008). Most governments recognize the value in

aligning their decisions with the views of the public constituents (B.C. Office of the Auditor General,

2008). Moreover, members of the public typically are more supportive of a government decision if they

understand it was made with the views of those who are most affected. As a result of these motives,

governments are increasingly engaging the public in a range of public participation activities in order to

be more transparent and validate that significant decisions have been made with external views in mind

(B.C. Office of the Auditor General, 2008). Provincial governments across Canada who believe public

participation is essential to durable decision-making have formed legislation or mandatory guidelines to

ensure that the public is involved (B.C. Office of the Auditor General, 2008).

Boivin et al. (2014) report that “public involvement resulted in mutual influence and greater

agreement between professionals and members of the public, yielding health care improvement priorities

that were better aligned with public expectations” (p. 321). Valuing the process and the diversity of

knowledge and experience of patients/public and health professionals is key to patient and public


42

engagement mechanisms and health services improvements (Tritter & McCallum, 2006). In addition, one

of the core characteristics of consumer, carer, and community engagement is using knowledge as a

resource in co-producing value in healthcare system policy (Department of Human Services, Victoria

Government, 2006). These examples from the findings of this review fit with the interactive leadership for

PPE policy concept – particularly long-term mechanisms and partnerships between government

authorities, voluntary, public, and private sectors.

In summary, the interactive leadership in PPE policy concept’s main thrust is about the intentional

interaction between internal (government) and external (outside of government) systems to improve

relationships with diverse groups of stakeholders and improve their experiences with the healthcare

system. Policy-making involves complex political processes that are influenced by a multitude of internal

and external factors at multiple levels (Thurston, et al., 2005). The inter-related context of patient and

public engagement and healthcare system policy making is also influenced by a multitude of factors as

has been outlined in this section.

In the next section I discuss the strengths and limitations of this review followed by the

significance of the findings for advanced practice nursing leaders, nursing educators, and public service

professionals and policymakers. Next, the recommendation from the findings for future research is

discussed and is followed by the conclusion of this integrative review project.

Strengths and Limitations of this Project

Strengths of this Project. The findings of this study align with the concepts in the SM and SD

Theory outlined in the article by Osborne, Radnor and Nasi entitled, A New Theory for Public Service

Management? Toward a (Public) Service-Dominant Approach (2012). To my knowledge this is the first


43

integrative review that addresses patient and public engagement, healthcare system policy within a

context of this theoretical approach and links with nursing leadership competencies.

The results show that the SM and SD Theory is a useful framework for gaining a preliminary

understanding the complexities of both patient and public engagement and healthcare systems policy. The

findings of this review also fit with the constructs of the four concepts of the theory. This theory has

allowed us therefore to better understand the influencing factors of PPE, the levels of engagement and

policy, and some of the reasons why healthcare policymakers are engaging patients and the public.

As I was developing the Framework, I found the alignment between the concepts, elements,

influencing factors, themes, examples, and, the APL nursing competencies and indicators were

remarkably interconnected. The interconnected linkages may help nursing leaders to reflect on how APL

nursing competencies can be part of PPE policy processes. Moreover, the Framework may help inform

nursing leaders, policymakers, and, public service professionals in developing policies that support patient

and public engagement in health and healthcare policy processes.

Limitations of this Project. The vast majority of the sources reviewed relied on self-reported

factors that may not be generalizable to other countries, provinces or regions, and may be vulnerable to a

variety of bias, such as reporter, information and socio-political context biases. Another limitation of this

integrative review was that I excluded patient and public engagement policies about specific population

groups (e.g., Mental Health/Substance Use, First Nations/Métis, HIV/Aids) where there may have been

learning to inform my results. Also, this integrative review was completed and designed by one person –

myself. Prior and during the completion of this project, I was seconded from a regional health authority to

the B.C. Government Ministry of Health as the Provincial Director of Patients as Partners charged with

responsibility of leading the policy and program provincially. Examining my beliefs and prior exposure to


44

the field of PPE, I conclude that I am very keen to have patients, public, and, families involved in all

aspects of healthcare and health systems policy, and therefore, I might have introduced personal bias to

this project. On the other hand, a careful read of the literature and my analysis indicates that the literature

supports this belief.

One of the weaknesses of the framework is that it was also developed by only one researcher

(myself) and has not involved public policymakers, patients, families, caregivers, or other researchers. In

conducting the integrative review, I found there was not any one framework for PPE. Therefore, the

framework that I developed is a blend of frameworks I have reviewed that have influenced my thinking. I

chose the SM and ST theory because it really helped interpret the findings and begin to help answer the

question in this integrative review: do PPE policies make a difference in the healthcare system? The

findings in this review begin to also answer the question: what is the existing knowledge and actions that

healthcare leaders and policymakers need to know about PPE healthcare system policy? This theory also

helped to link the findings, the APL nursing competencies, and government policy and services.

Significance of the findings for Advanced Practice Nursing Leaders. Within the APL Program

option at the University of Victoria, Masters of Nursing students are prepared for a dual career focus,

advanced clinical practice and nursing leadership. The APL curriculum is informed by the University of

Victoria, Master of Nursing (MN) curriculum framework, the CNA Pan-Canadian Core Competencies for

the CNS (2014), the CASN National Nursing Education Framework (2014), a health equity lens, and a

spheres of influence model adapted from Fulton, Lyon, and Goudreau (2014). The APL option courses are

developed from the core courses of the MN program that focus on advanced nursing practice, disciplinary

scholarship, and, research competencies. The APL competencies and indicators include policy in

competencies and indicators.


45

From a nursing leadership perspective, I find it interesting that for a long time nurses have valued

the formation and implementation of health policy yet few nurses practising in clinical setting perceive

health policy to be a nursing issue or engage in policy debates (Toofany, 2005). Although there is

recognition that nurses and nursing are well positioned to influence policy and political decision-making,

there is also a need for greater support from nursing leaders and nursing organizations for nurses to gain

more knowledge about influencing and shaping health and healthcare policy (Fyffe, 2009). There is also

recognition of the need for nursing leaders to have core competencies and training in the area of policy

awareness, policy formation processes, and the basics of government processes and healthcare (Ferguson

& Drenkard, 2003).

The findings of this integrative review have relevance for advanced practice nursing leaders

involved in or who want to be involved in policy and PPE. This may include nurses developing and

providing strategic health policy direction as well as those offering nursing leadership, providing nursing

education, developing policy, or conducting research. There were many APL nursing competencies and

indicators that aligned with the findings of this review and the SM and SD theoretical concepts. The

following four examples are discussed with the intention of showing the significance of these

competencies in the direction of PPE policy and to emphasize the nursing role in the policy process.

The first example is the APL nursing competency indicator, creating a culture of learning in

nursing practice that fosters a spirit of inquiry. This competency aligns with findings in the review that

show PPE enables health system decision makers to address the right issues in an appropriate way, and to

design programs, policies, and planning that correspond to public needs. This example shows that

decision makers are creating a culture of learning by engaging patients and the public (or inquiring) to

develop policy that closely reflect the publics’ needs. My personal nursing practice working in provincial


46

government aligned me with the competency indicator mentioned above and these findings. For example,

I believe it is essential to engage patients, families, communities, and external organizations in prominent

discourses on healthcare policy with senior levels of government. I was distinctly aware of the

opportunity for creating a culture of learning and inquiry about PPE in the policy development process

within government, particularly, when engaging patients, families, and communities in government

processes was not always well understood by my public service colleagues. Yet, some of these colleagues

having been provided the opportunity to address issues, concerns, and questions were ready, willing, and

supportive of adopting PPE to better inform decisions, planning, and policy.

The second example is the nursing APL competency, fostering collaborative working

relationships with diverse stakeholders (including interprofessional and inter-sectoral spheres). This

competency is also aligned with the results in my review, specifically, the main premise of the public

service collaboration theoretical concept. The key elements in this concept are about maintaining

collaborative relationships, building trusted partnerships and co-creating joint improvements. Moreover,

the findings showed that government can gain valuable knowledge through public engagement leading to

better policies and decisions and a strengthened democracy. Reutter and Duncan (2002) posit that

elements such as inter-sectoral collaboration and citizen participation are particularly relevant for nurses

and nursing in developing and enacting policy. It is my hope that nurses will commit to the application of

PPE and to create a culture of learning and inquiry in collaboration with government healthcare

policymakers, other organizations, patients, families, and the public.

The third APL competency and indicator that interlinks with the review findings was

demonstrating knowledge of and engagement with leadership theories (e.g., articulating the possibilities

for nursing leadership across five spheres of influence patient, nursing practice, inter-sectoral,


47

organizational, and health systems and health policy). The PPE policy implementation theoretical concept

is about the government leadership role to ensure the service user at the heart of the process and is

embedded in key strategic directions for supporting engagement and ensuring decisions and priorities

reflect the needs of the citizens. Articulating the possibilities for nursing leadership across multiple

levels of influence (including patients, families and the public) in healthcare policy is congruent with the

PPE policy implementation concept and the previously discussed public service collaboration concept.

What this means to me is that nurses have an integral role in the healthcare policy discourse and in

articulating the possibilities in collaboration with multiple stakeholders and the public in the healthcare

policy agenda.

The fourth APL nursing competency, demonstrating leadership within complex health systems,

whereby nurses participate in the development and implementation of policy at multiple levels is

particularly aligned with the findings in this review and the theoretical concepts. The findings from my

review show that interactivity between internal governments and external patients or public in other words

PPE is seen as a mechanism for public service reform (House of Commons, Health Committee, 2007;

House of Commons Public Administration Select Committee, 2013; Public and Patient Experience and

Engagement Team, 2011; Scottish Government, 2007; Tritter, & Kolvusalo, 2013).

The findings also that show that the public is typically more supportive of government decisions if

they understand it was made with their views in mind. Additionally, as a result of these motives,

governments are increasingly engaging the public in a range of public participation activities in order to

be more transparent and increase confidence about significant decisions that have been made with

external views in mind (British Columbia, Office of the Auditor General, 2008; Government of

Newfoundland and Labrador, n.d.; Mackinnon, 2003; Mullen, Hughes & Vincent-Jones, 2011). The


48

findings in my review show that benefits include improved democratic legitimacy, governance, policy

implementation and staff morale as well as improved peoples’ experience with the healthcare system and

knowledge of complex issues, and increased citizens’ sense of responsibility. Nurses are well situated to

provide a leadership role within the complexity of health care transformation and to work at multiple

levels within government and healthcare service delivery.

Significance of Findings for Nursing Educators. I am very encouraged to learn that education

in health policy processes and experiential internships for nurses has been recommended for integration in

the undergraduate BSN curricula (Reutter & Duncan, 2002). What are the best ways to prepare nurse

leaders with the necessary awareness, political insights, and collaborative mind-sets to share leadership,

organizational dynamics, and strategic skills to enact health care policy? There is a multitude of ways that

schools of nursing education leaders have implemented the above recommendation. For example, George

Mason University, and Inova Health System developed an accredited 5-day Institute that provided an

overview of how government systems work. Course requirements for nursing leaders included writing to

Congress, editors and policy makers in the area of interest, crafting legislation, and completing a personal

career portfolio outlining action plans for developing policy experience (Ferguson & Drenkard, 2003).

The Royal College of Nursing provides a Political Leadership Programme, the United States has adopted

a range of strategies intended to support nursing’s influence in shaping policy, and, the International

Council for Nursing supports efforts to improve the preparation of nurses for leadership and policy

development (Fyfee, 2009). The College of Registered Nurses of British Columbia, Professional

Standards for Registered Nurses and Nurse Practitioners includes articulating and supporting the

translation of knowledge gained from research into policy and practice (College of Registered Nurses of

British Columbia, 2015).


49

According to Hewison (2008), however, there are approximately 2.6 million practising nurses that

need to improve their level of influence in the policy making process. Moreover, in the UK it has been

reported that few nurses practicing in clinical settings are involved in policy or perceive health policy to

be a nursing issue (Toofany, 2005). Nurses in Canada continue to enjoy a high level of the public’s trust;

however, at the same time nurses are challenged to strengthen their collective capacity in political

processes (Duncan, Rodney, & Thorne, 2014). There is considerable work to be done to transform the

healthcare system – healthcare policy is a critical part of this work. I would recommend that nurse

educators offer a healthcare policy development course for graduate nursing students. In addition to

George Mason University accredited 5-day Institute and The Royal College of Nursing Political

Leadership Programme, Reutter and Duncan (2002) describe a graduate nursing course for promoting

health policy. The Reutter and Duncan course curriculum includes inter-sectoral collaboration, citizen

participation, and policy communities and networks as part of the course content. Their goal however, is

to develop activists’ roles for advanced practice nursing and leadership and their curriculum foci also

included coalition advocacy and media advocacy. Based on my experience, I believe that developing a

nursing masters level course that included a focus on developing policy competencies and patient and

public engagement would add to the knowledge base for all graduate nursing students about healthcare

legislation, regulation, and policy processes, development, implementation, and accountability. Based on

my experience and the findings of this review, I would also recommend that a policy development course

for graduate nursing students include PPE policy. I believe a course on healthcare policy would provide

graduate nurses with the knowledge about how organizations, service users, and the public can engage as

part of the healthcare policy development and implementation process as well as the benefits of PPE

policy.


50

In conversations throughout the graduate nursing program, I have learned that my fellow students

had minimal understanding or experience in the area of healthcare policy and that currently there are

organizations, service users, and the public who are engaged in healthcare policy process development.

Increasing my awareness about my fellow students understanding was important for broadening my

personal perspective; it helped me reflect about a lack of knowledge that may lead to reluctance for nurses

to engage and collaborate with multiple partners in the process of developing healthcare policy. Relating

this to my project findings, there is a need to involve diverse stakeholders in creating solutions to complex

policy problems and I believe nurses need be more of a part in this collaborative process.

Significance of the findings for Public Service Professionals and Policymakers. From my

experience in nursing practice and provincial government as a public service professional including a

public service policymaker, I would suggest the following findings may be significant to public service

professionals including policymakers. The two main findings in this review that I believe are most

significant are improving competencies of public service professionals and changing the culture in public

service to ensure a more flexible system for PPE policy processes. I will briefly discuss these findings.

First, findings show that improving competencies of public service professionals require new roles

of public service professionals that include expertise in PPE and developing collaborative partnerships

within public service and also with external organizations. Collaborative relationships between traditional

public service professionals, service managers, and the political decision makers who shape the strategic

direction of the service system can provide opportunities to broker new roles in public service (Boviard,

2007). One recommendation that I would suggest is to include expertise in PPE policy development and

implementation, and collaborative partnerships with external stakeholders, in government policymaking

and leadership job descriptions. Another recommendation I would suggest for government includes


51

developing PPE policies that defines the intention and incorporates accountability and reporting

mechanisms. For example, in Australia, the Victoria Government Doing it with us not for us participation

policy specifies the intent to improve health policy and planning, care and treatment, and the wellbeing of

all Victorians (Department of Human Services, Victoria Government, 2006).

Findings in this review show that there is a need to change the culture within government to be

more a flexible for PPE policy processes. In order for a cultural shift to take place, Cavaye (2004)

suggests there is a need for people to develop mindsets that support the structures of PPE. Moreover,

authentic engagement requires new thinking with regards to different assumptions, values, and principles

than has been in the traditional healthcare delivery approach. Findings also indicated a need for leaders in

government to improve listening skills and incorporate these skills into the PPE dialogue.

Recommendations from the findings for Future Research

There were a number of research recommendations that emerged in this review. These included

the need for research to improve: furthering the development of public engagement at multiple levels,

their specific impact and interconnection (Bovaird, 2007); and contributing to more effective health

services to ultimately, improve the quality of life of Canadians and strengthen the national health care

system (Canadian Institutes of Health Research, 2014). Further, there is a requirement for more

consistent definitions of PPE, that link empirical research with theory and using pre-specified hypothesis,

using multidisciplinary perspectives and mixed evaluation methods (Boivin, et al., 2014). Another

recommendation is that researchers examine the link between citizen participation and accountability for

decision making (Thurston, et al. 2005). There is still much to be done to develop, monitor, and evaluate

models of citizen participation its impact on the health system and the health of the population across

different settings and circumstances (Thurston, et al., 2005). More quantitative evaluation designs would


52

contributed significantly to our understanding of the effectiveness of PPE policies and processes. Future

research could also include exploring how specific groups experiencing health conditions (e.g., Mental

Health/Substance Use, Methadone Maintenance Treatment, HIV/Aids) address PPE policies.

Additionally, future research could also include how First Nations/Métis address patient and public

engagement policies.

Conclusion

This integrative review project critically appraised literature and sources regarding PPE policy and

its potential impact on the healthcare system. The findings point to the significance of engaging the

patients, citizens, and the public at multiple levels of health system policy processes and implementation.

The significance of PPE in the policy processes and implementation have been articulated with the intent

to position nurses, healthcare leaders, researchers, policy makers, and patients and families to work

together co-create a more sustainable healthcare system.

One of my goals in this integrative literature review was to develop a conceptual framework that

can inform the future design of patient and public engagement in healthcare system policy. The PPE and

Policy framework in the context of the SM and SD Theory and APL Competencies presented in this

review may provide a preliminary foundation for constructing new models of patient and public

engagement in healthcare system policy. I believe this theory may also provide policy makers and nurse

leaders a starting point for linking management theory in government and patient and public engagement

in policy-making thus making a more succinct arguable policy.

The specific question I asked in this integrative review is: Do PPE policies make a difference in

the healthcare system? I would suggest the findings support that PPE policies do make a difference.


53

However, the findings in this review are far from the final word and are offered as a contribution to the

ongoing debate.


54

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65

Appendix A

Interchangeable terms and common elements for the concept of patient and public engagement

Citation Terms 15 Common Influencing Factors: associated with patient and public engagement

Terms associated with Patient

and Public Engagement

Act

ion(s

)/

acti

vit

ies/

Act

ive

role

Inte

ract

ion(s

)

Pat

ients

as

Equal

Par

tner

s A

ppro

ach

Pt.

Voic

e/C

hoic

e/

Rep

rese

nta

tion

Com

ple

x /

lack

of

Cla

rity

/mult

iple

def

init

ions

Conte

xt/

conce

pt

Co-d

esig

n

/co-o

per

atio

n /

shar

ed d

ecis

ion

mak

ing

Exper

ience

Involv

e/In

volv

ed

Mec

han

ism

/Pro

ces

Org

aniz

atio

nal

Cult

ure

Chan

ge

Qual

ity

impro

vem

ent(

s)

Coll

abora

tive

Rel

atio

nsh

ip(s

)/

Par

tner

ship

(s)

Poli

cy /

Man

dat

ed/

Volu

nta

ry

(Re)

Solu

tion t

o

the

pro

ble

m(s

)

Spec

trum

of

Pra

ctic

es/

Met

hods/

Lev

els

Carmen et al. (2013). Patient/Family Engagement X X X X X X X X X X X X X X X

Tritter, McCallum & Alison. (2006). User/citizen Involvement X X X X X X X X X X X X X X X

Forbat, et al. (2009) Patient Engagement X X X X X X X X X X X X X X X

Kreindler. (2009). Patient Involvement X X X X X X X X X X X X X X X

Hudson. (2014). Public/Patient Engagement X X X X X X X X X X X X X X X

Maruer, et al. (2012). Patient/Family Engagement X X X X X X X X X X X X X X X

NHS Buckinghamshire. (2010). Patient/Public Involvement X X X X X X X X X X X X X X X

Barnes, Newman, Sullivan. (2004). Public Participation X X X X X X X X X X X X X X X

Health Canada. (2000). Public Involvement X X X X X X X X X X X X X X X

British Columbia Provincial Government (2011) Patient/Public Engagement X X X X X X X X X X X X X X X

Canadian Institutes of Health Research. (2014). Patient Engagement X X X X X X X X X X X X X X X

Health Council of Canada. (2011). Engagement X X X X X X X X X X X X X X

Mullen, Hughes & Vincent-Jones. (2011). Patient/ Public Involvement /

Public Participation

X X X X X X X X X X X X X X

Warburton, Wilson & Rainbow. (2011). Public Engagement X X X X X X X X X X X X X

Hogg. (2007). Patient/Public Involvement X X X X X X X X X X X X X

Mitton, et al., (2009). Public Engagement X X X X X X X X X X X X X

Litva et al.. (2002). Participation X X X X X X X X X X X X X

Reddel &Woolcock. (2004). Citizen Engagement/

Participatory Governance

X X X X X X X X X X X X X


66

Citation Terms 15 Common Influencing Factors: associated with Patient and Public Engagement

Terms associated with Patient

and Public Engagement

Act

ion

(s)/

Act

ivie

s

Inte

ract

ion

Act

ive

Act

ivat

ion

Ro

le

Pat

ien

ts a

s E

qu

al

Par

tner

s

Pat

ien

t V

oic

e

cho

ice

rep

rese

nta

tio

n

Co

mp

lex

/Lac

k o

f

Cla

rity

, M

ult

iple

Ter

ms

Co

nte

xt/

Co

nce

pt

Co

-

des

ign

/op

erat

ion

/

shar

ed d

ecis

ion

mak

ing

Ex

per

ien

ce

Inv

olv

e/In

vo

lved

Mec

han

ism

/Pro

ces

s Org

aniz

atio

nal

Cu

ltu

re /

So

cial

Ch

ang

e

Qu

alit

y

imp

rov

emen

t

Co

llab

ora

tiv

e

Rel

atio

nsh

ip(s

)/

Par

tner

ship

(s)

Po

licy

/Man

dat

ed

Leg

/V

olu

nta

ry

So

luti

on

to

th

e

pro

ble

m(s

)

Sp

ectr

um

of

Pra

ctic

es/

Met

ho

ds/

Lev

els

Bovaird. (2007). Public Engagement Involvement X X X X X X X X X X X X

Deverka et al. (2013). Stakeholder Engagement X X X X X X X X X X X X

Abelson et al. (2007). Public Participation X X X X X X X X X X X X

Barello, Graffigna & Vegni. (2012). Patient Engagement X X X X X X X X X X X X

Baker. (2007). Patient Involvement X X X X X X X X X X X X

South, J. (2007). Patient/Public Involvement X X X X X X X X X X X X

Church et al.. (2002). Citizen Participation X X X X X X X X X X X X

Brosseau & Verma. (2011). Patient Engagement X X X X X X X X X X X X

Reseman, et al., (2013). Engaging Patients X X X X X X X X X X X

Boivin, Lehoux, Burgers & Grol. (2014). Public Involvement X X X X X X X X X X X X

Gallivan, et al. (2012). Patient Engagement X X X X X X X X X X X

Simmons & Birchall. (2005). Participation X X X X X X X X X X X

Kovacs Burns, et al., (2014). Public Involvement/Engagement X X X X X X X X X X X

Ansari & Andersson. (2011). Public Participation X X X X X X X X X X X

Vahdat, et al. (2013). Public Participation/Involvement X X X X X X X X X X X

Center for Advancing Health. (2010). Patient Engagement X X X X X X X X X X

Newman, Barnes, Knops & Sullivan. (2004). Public Participation X X X X X X X X

Rowe & Frewer. (2005). Public Participation X X X X X X X X

Petriwskyj, Gibson & Webby. (2014). Client Engagement X X X X X X X

Nease, Glave Frazee, Zarin & Miller. (2013). Patient Engagement X X X X X X

Bruni, Laupacis & Martine. (2008). Public Engagement X X X X X X

Total % 90 73 83 76 73 75 86 93 73 70 53 80 85 78 70

Ranked Number of elements - highest to lowest 2 10 5 8 10 9 3 1 10 11 12 6 4 7 9


67

Appendix B

Patient and Public Engagement Frameworks

# Reference Framework Levels of Engagement (Individual) Levels of Engagement

(Community/Organization)

Levels of Engagement (System)

1 Carmen,

et al.

(2013).

A Multidimensional

Framework For Patient And

Family Engagement In

Health And Health

Care

Direct Care: Consultation - Patients

receive information about a diagnosis

Involvement – Patients asked about

preferences of treatment. Partnership and

Shared Leadership – Treatment decisions

are based on patient preferences, medical

evidence and clinical judgement.

Organizational Design and Governance:

Consultation – Organization surveys

patients about their care experiences

Involvement – Hospital involves patients as

advisors. Partnership and Shared

Leadership – patients co-lead safety and

quality improvement committees

Policy Making: Consultation –public agency conducts focus groups

with patients to ask opinion about a healthcare issue Involvement –

Patients’ recommendations about research are used by public

agency to make funding decisions Partnership and Shared

Leadership – Patients have equal representation on committee’s that

make decisions about how to allocation of resources.

2 B.C..

Office of

the

Auditor

General.

(2008).

A Public Participation

Framework

(Adapted from Health

Canada and International

Association of Public

Participation)

Level 1: Inform – low level of influence.

Objective: To provide balanced/objective

information to support understanding by

the public. Level 2: Gather information

Objective: Listen to obtain feedback on

analysis, alternatives and/or decisions.

Level 3: Discuss - Mid level of public

participation and influence.

Objective: To work with the public to

ensure that concerns and aspirations are

understood and considered.

Level 4: Engage Objective: To facilitate discussions and

agreements between public parties to identify common ground for

action and solutions.

Level 5: Partner – High level of public participation and influence.

Objective: To create governance structures to delegate decision-

making and/or work directly with the public.

3 BC

Ministry

of Health.

Amended B.C. Ministry of

Health Patients as Partners

Charters (2011, 2015)

Individual: Activated patient – involved in

their own health – self-management Patient

–centred care – system is responsive,

respectful, and collaborative.

Community Services, patients, families,

strategic partners engaged in design,

delivery and evaluation of health care

programs and community services.

System Redesign - Engagement of patients, families, caregivers,

communities, strategic partners in policy development or healthcare

system redesign. Patients, families, caregivers, communities,

partners in governance.

4 Maloff,

Bilan &

Thurston.

(2000).

Calgary Regional Health

Authority (CRHA)

Information: Public is informed;

clarification/communication of decision is

made. Input: Public’s opinions may be

used in decision making by CRHA

Consultation: Public’s informed publics’

perceptions may be used in decision

making. Consultation is interactive.

Decision making remains with CRHA.

Partnership: Public participates in a partnership process. Joint

decision making between the CRHA and the public.

Delegation: Decision making is delegated to the public.

5 Wait &

Nolte.

(2006).

Participation ladder

Adapted from Brager and

Sprecht, 1973; building on

Anstein (1969).

Received information: Organization

announces a plan. Community is convened

for information purposes. Compliance is

expected. Is consulted: Organization tries

to promote a plan. Seeks to develop

support to facilitate acceptance to plan.

Advises organisation: presents a plan and

invites questions. Prepared to modify plan

if necessary. Plans jointly: presents

tentative plan subject to change from those

affected. Expect to change plan at least

slightly or perhaps more subsequently.

Has delegated control: Organization identifies and presents a

problem to the community, defines the limits and asks community

to make a series of decisions, which can be embodied in a plan it

can accept. Has control: Organization asks community to identify

the problem and to make all the key decisions on goals and means.

Willing to help community at each step to accomplish goals.


68

Appendix C

Guiding framework for critiquing qualitative literature

Author/Article ______________________________ Year

Elements Questions Total

Score

Article

Score

Elements influencing believability of the research

Writing style Is the report well written – concise, grammatically correct, avoids the use of

jargon? Is it well laid out and organized?

2

Author Do the researcher’s qualifications/position indicate a degree of knowledge in

this field?

1

Report Title Is the title clear, accurate and unambiguous? 1

Abstract Does the abstract offer a clear overview of the study, including the research

problem, sample, methodology, findings and recommendations?

2

Elements influencing Robustness of the research

Phenomenon of

interest

Is the phenomenon to be studied clearly identified?

Are the phenomenon of interest and the research question consistent?

3

Purpose Is the purpose of the study/research question clearly identified? 2

Literature

Review

Has a literature review been undertaken? Does it meet the philosophical

underpinnings of the study? Does the literature review fulfil its objectives?

3

Theoretical

Framework

Has a conceptual or theoretical framework been identified? Is the framework

adequately described? Is the framework appropriate?

3

Method/

philosophical

underpinnings

Has the philosophical approach been identified? Why was this approach

chosen? Have the philosophical underpinnings of the approach been explained?

3

Sample Is the sampling method and sample size identified? Is the sampling method

appropriate? Were the participants suitable for informing research?

3

Ethical

considerations

Were the participants fully informed about the nature of the research? Was the

autonomy/confidentiality of the participants guaranteed? Were the participants

protected from harm? Was ethical permission granted for the study?

4

Data

collection/data

analysis

Are the data collection strategies described? Are the strategies used to analyse

the data described? Did the researcher follow the steps of the data analysis

method identified? Was data saturation achieved?

4

Rigour Does the researcher discuss how rigour was assured? Were credibility,

dependability, transferability and goodness discussed?

2

Findings/

discussion

Are the findings presented appropriately? Has the report been placed in the

context of what was already known of the phenomenon? Has the original

purpose of the study been adequately addressed?

3

Implications/

recommendation

s

Are the importance and implications of the findings identified? Are

recommendations made to suggest how the research findings can be developed?

2

References Were all the books, journals etc., alluded to in the study accurately referenced? 1

Total 39 Adapted from Coughlan, Cronin, and Ryan (2007). Maximum total score is 39. High: 36-39; Medium: 26-35; Low: 25-1.


69

Appendix D

Guiding framework for critiquing secondary/grey literature

Author/Article/Document/Report ______________________________ Year

Type of Secondary/Grey Literature X Type of Secondary Research X

Government Documents Reference Books

Official Statistics Research Institutions

Technical Reports Universities

Scholarly Journals Libraries, Library Search Engines

Trade Journals Computerized Databases

Review Articles Dissertation/Thesis

Critique Evaluation Tool for Secondary Research

Elements Questions Total

Score

Article

Scores

Elements influencing believability of the Secondary research

Writing style Is the report well written – concise, grammatically correct, avoids

the use of jargon? Is it well laid out and organized?

2

Author(s)/

Source(s)

What are the authors/sources qualifications/position/credentials

indicate a degree of knowledge in this field? Past works/writings.

Reliable sources of information.

1

Report Title Is the title clear, accurate and unambiguous? 1

Elements influencing Robustness of the Secondary research

Secondary Source Does the report reference primary sources? 1

Phenomenon of

interest

Is the phenomenon to be studied clearly identified?

Are the phenomenon of interest and the research question

addressed?

3

Methods

Does the article have a section that discusses the methods used to

conduct the study? Are the methods sound? Why was this approach

chosen?

3

Is the document or

report well-

referenced?

When data and/or figures are given, are they followed by a footnote,

endnote -- which provides a full reference for the information at the

end of the page or document -- or the name and date of the source.

2

Do the numbers

make sense?

For the purpose of secondary data analysis, the aggregated

percentage figure, rather than the number of “cases” reported,

should be used.

1

Theoretical or

Conceptual

Framework

Has a conceptual or theoretical framework been identified? Is the

framework adequately described? Is the framework appropriate?

2

Publication Date When was the source published? Is the source current or out-of-

date?

1


70

Data

collection/data

analysis

Are the data collection strategies described? Are the strategies used

to analyse the data described? Was data saturation achieved? Does

the report/document accurately relate information from primary

sources?

4

Intended Audience Is the intended audience stated? Is the publication aimed at a

specialized or a general audience? Is the source too elementary --

aimed at the general public?

3

Coverage of

Document/Report

What is the Coverage of the Report or Document? Does the work

update other sources, substantiate other materials/reports, or add

new information to the topic area?

2

Credibility Were credibility, dependability and transferability discussed? 2

Findings/discussion Are the findings presented appropriately? Has the report been

placed in the context of what was already known of the

phenomenon? Has the original purpose of the study/document been

adequately addressed?

3

Conclusions/implic

ations and

recommendations

Are the importance and implications of the findings identified?

Are recommendations made to suggest how the research findings

can be developed?

2

Sample Is the sampling method and sample size identified?

Is the sampling method appropriate?

2

Total 35

Adapted from McCaston, M, K., (2005)

Total scores are 35. High: 33- 35; Medium: 25-34, Low: 24-1.


71

Appendix E

Summary of Data Extraction

Author/

Country

Subject of the

Article/Source M

ethod a

nd S

etti

ng

(Reg

ional

,

Pro

vin

cial

, N

atio

nal

)

Findings

Engag

emen

t L

evel

s

Indiv

idual

,

Com

munit

y, S

yst

em

Limitations Implications/

Recommendations

1 Meads,

Griffiths,

Goode,

Iwami,

(2007)

UK

Bolivia,

Brazil,

Chile,

Columbia,

Costa Rica

Mexico,

Peru,

Venezuela

Examine the

management

of policies for

PPI in Latin

American

health systems,

identify

common

features and

describe local

practice

examples that

are relevant to

the UK

Qual

itat

ive

Cas

e S

tudie

s

Nat

ional

Six common factors were

identified in Latin

American policies for

stronger patient and public

involvement. The most

significant transferable

learning for the UK

relates to the position and

status of professions and

non-governmental

agencies. S

yst

em May not be

generalizabl

e to other

countries /

states

Specific to policy

makers regarding

implementation:

findings indicate the

need for a

multidimensional

approach to local

engagement which

emphasizes enabling

influences and not

over reliant on either

particular structures

or issues.

2 Bovaird,

(2007)

England

Brazil

France

A conceptual

framework for

understanding

the emerging

role of user

and

community

coproduction.

Case studies

illustrate how

different forms

of

co-production

have been

implemented

in practice.

Qual

itat

ive

Cas

e st

udie

s

Nat

ional

Policy is not reserved for

policy planners and top

decision makers and is

currently viewed as the

negotiated outcome of

many interacting policy

systems. Similarly, the

delivery and management

of services is no longer

just the domain of

professionals and

managers — users and

other members of the

community are having a

more important role in

shaping decisions and

outcomes.

Com

munit

y , S

yst

em Some

limitations

of

coproductio

n emerge in

each of the

case

studies; the

implications

results may

not be

generalizabl

e.

A new type of public

service professional

is needed (e.g.,

coproduction

development officer)

to help: broker new

roles for

coproduction

between traditional

service professionals

and political

decision makers.

Empirical research is

needed on PPE at

multiple levels to

show specific impact

and interconnection.


72

3 Conklin,

Morris,

Nolte,

(2012)

Europe

England,

Canada,

USA

Northern

Ireland

Review peer-

reviewed

empirical

evidence on

out-comes of

public

involvement in

health-care

policy

Qual

itat

ive

R

esea

rch

Nat

ional

How did public

involvement influence

decision making?

Recommendations were

accepted and

implemented; practical

changes/improvement was

achieved and priorities

identified through a public

involvement activity.

Changes evolved into a

regional programme

and/or resulted in new

financial leveraged

opportunities for new

services (e.g., speaks to

spread or scalability).

Syst

em

Search

restrictions

(e.g., small

number of

databases,

published

peer-

reviewed

literature

only) may

have missed

a wider

body of

evidence

reported in

the grey

literature.

From a policy

perspective, there is

a need for robust

evaluation and a

better evidence base

re: consistent

approach regarding –

public involvement

process

improvements and/or

outcomes of decision

making and policy.

Recommendation

included: evidence

about what type of

public involvement

makes a difference

in what context(s).

4 Oxman,

Lewin,

lavis,

Fretheim

(2009)

SUPPORT

UK

(England,

Wales,

Northern

Ireland)

Address

strategies to

inform and

engage the

public in

policy

development

and

implementatio

n

Qual

itat

ive

Res

earc

h

Sch

ola

rly J

ou

rnal

Nat

ion

al, S

tate

Involvement was

classified 3 ways,

consultation,

collaboration, and

consumer control.

Consultation -

consumers are asked for

their views to inform

decision making.

Collaboration is active,

ongoing partnerships with

consumers (e.g.,

committee members on

the health boards or

regulatory committees).

Consumer control,

consumers develop and

advocate or implement

health policies

themselves.

Indiv

idual

Com

munit

y S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretation of

examples

Formal

mechanisms/method

s of decision making

may help to ensure

appropriate forms of

collaboration.

Without these it may

be difficult to judge

whether public

involvement has had

any influence at all.


73

5 Lenihan,

(2012)

Canada

Australia

Explore new

ways of

thinking about

how

governments,

stakeholders,

communities,

and ordinary

citizens can

work together

—collaborate

—to find and

implement

solutions to

complex

problems (e.g.,

failure to

innovate).

Gre

y L

iter

ature

Reg

ional

, P

rovin

cial

, N

atio

nal

Policy process design

helps decision-makers test

ideas to find the right one.

Collaborative policy-

making is about building

and managing the

relationships among all of

the players involved and

implementing the right

ideas (e.g., process

matters). Collaborative

partnerships transforms

service delivery where the

role of the public is with

active participants in

design and delivery

Public engagement can be

a practical way to

familiarize public

expectations in a new

policy environment.

Indiv

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

Engagement in

government services

should aim at

collaborative policy

making that joins up

communities through

partnerships between

citizens, community

organizations and

the multiple levels of

government. This

approach may be a

better way of doing

business because it

moves governments

and the community

toward a new view

in which they are

full partners in

governance.


74

6 Tritter, &

Koivusalo,

(2013)

Multiple

Countries

FINLAND

Aim is to

answer the

question -

Does Patient

and Public

Involvement

(PPI) make a

difference?

Q

ual

itat

ive

Res

earc

h

Nat

ional

Authors posit the NHS

Health & Social Care Act

2012 legislation

undermines the principle

of PPI, public

accountability and takes

back the power for

prioritisation of health

services to unaccountable

medical elite. The

Clinical Commissioning

Groups (CCGs) have

statutory power to ‘do’

PPI but have no

requirement to involve the

local HealthWatch, has

limited experience and no

accountability to local

people. Authors reported

that the bill erodes public

ownership of the NHS –

PPI is weakened due to

emphasis on individual

patient choice. In

div

idual

Com

munit

y S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Patients perspective

motto “there should

be no decision about

us, without us” and

question remains

whether this is

merely rhetoric or

will be made a

reality - and query -

how will we know?

PPI is a mechanism

for dialogue about

what the public

wants and needs to

promote well-being

and hold all involved

(e.g., politicians,

healthcare provider

organizations and

patients)

accountable.


75

7 Tritter, J,

Q.,

McCallum,

Alison,

(2006). The

snakes and

ladders of

user

involvement

: Moving

beyond

Arnstein.

Health

Policy, 76,

156-168.

Multiple

Countries

Finland

Arnstein’s

model,

emphasizes on

power limits

effective

responses to

the challenge

of involving

users in

services and

undermines the

potential of the

user

involvement

process. Such

an emphasis on

power ignores

the existence

of different

relevant forms

of knowledge

and expertise.

Qual

itat

ive

Res

earc

h

Nat

ional

PPI is more likely to be

unsuccessful when there is

a mismatch of expectation

or method. User

involvement requires

dynamic structures and

processes legitimised by

both participants and non-

participants and mandates

more direct forms of user

involvement.

Understanding user

involvement as a part of a

larger system helps bridge

the divide between micro

level changes and system-

wide reforms. Policy

makers need to be aware

that an overemphasis on

ensuring statistical

representativeness in user

involvement blocks

attempts to begin to

involve users.

Indiv

idual

Com

munit

y S

yst

em Case

studies, the

implication,

results may

not be

generalizabl

e to other

countries.

For user

involvement to

improve, health

service providers

must acknowledge

the value of the

process and the

diversity of

knowledge and

experience of both

health professionals

and lay people.

Involvement

processes must be

enabling at 4 levels:

healthcare system,

organisation,

community, and

individual. Users

must have

mechanism and the

ability to shape the

methods used for

their involvement.


76

8 Boivin,

Lehoux,

Burgers &

Grol, (2014)

Multiple

Countries

Canada

Process

evaluation

seeks to better

understand the

dynamic

relationships

between the

intervention

components

and public

members’

ability to

influence

collective

health care

improvement

decisions.

Mix

ed M

ethodolo

gy

Res

earc

h

Reg

ional

The literature remains

characterized by a

combination of practice

stories that are contextual

learning and light on

causal mechanisms, and

experimental studies

implemented. A number

of interacting active

ingredients structure and

foster the public’s

legitimacy, credibility,

and power. By paying

greater attention to them,

policymakers could

develop and implement

more effective public

involvement

interventions. Restricting

public involvement to 1 or

2 individuals without

appropriate support it is

unlikely to change health

care and policy decisions. In

div

idual

, C

om

munit

y, S

yst

em The

generalizability

of the

findings

could be

limited due

to the

diversity of

public

involvement

intervention

s and the

influence of

the socio -

political

contexts in

which they

are

implemente

d.

The authors suggest:

1 more consistent

definitions of PP

mechanisms; 2 link

empirical research

with theory and pre-

specified hypothesis;

3 use

multidisciplinary

perspectives and

mixed evaluation

methods; and 4

conduct research on

real-world

involvement

interventions.

Policymakers should

seek to apply broad,

clear and consistent

principles enabling

the development of

more effective

involvement

interventions.


77

9 Legare,

Stacy &

Forest,

(2007)

Multiple

Countries

Canada

Discuss the

current state

and challenges

with

implementatio

n of patient

involvement at

three levels,

macro, meso

and micro

level, specific

with Shared

Decision

Making

(SDM).

Qual

itat

ive

Res

earc

h

Nat

ional

R

egio

nal

National dialogues are

costly due to the expenses

associated with

preparation,

communication,

facilitation, reporting, and

transportation costs.

Current initiatives through

medical and nursing

organizations to explicitly

identify and evaluate

competencies related to

SDM have the potential

for broader influence on

SDM implementation.

Health Quality Council of

Saskatchewan – pubic is

more than advisory role

and includes a

transformative role in the

health system – including

partnering with other

Agencies. In

div

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Challenges in terms

of exclusion and

isolation need to be

addressed. Similarly

to implementation of

SDM in other

countries, it would

be useful to reflect

on a national

initiative regarding

the implementation

of SDM within the

Canadian context.

The future of public

engagement in

health governance

and policy might be

dependent on the

development of new

interactive

approaches, based on

low cost

technologies.


78

10 Sheedy, A.,

(2008).

Canada

Contribute to

the closing of

the gap

between

governments

and citizens, to

allow public

servants

and politicians

to reconnect

with citizens’

needs,

priorities, and

values.

Gre

y L

iter

ature

Nat

ional

Engaging citizens in a

policy or program

development process from

the beginning can:

increase citizens’ sense of

responsibility and

understanding for

complex issues; be an

important mechanism to

clarify citizen’s values,

needs and preferences;

lead decision-makers to

make better decisions by

helping them to

understand the potential

social and ethical

implications of their

decisions; allow

politicians to share

ownership for a

controversial public

decision with citizens;

and, increase legitimacy

of public decisions. In

div

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

What citizen

engagement requires

governments to do is

- share agenda-

setting and ensure

that policy proposals

are generated jointly

to enable citizen

views to be taken

into account in

reaching final

decisions.


79

11 MacKinnon

, (2003)

Canada

The

Commission

on the Future

of Health Care

in Canada

wanted to learn

what

Canadians

thought about

re: sustaining

the health care

system in the

21st century

re: information

about citizens’

values and

their preferred

choices about

priorities.

Sec

ondar

y

Inte

rpro

vin

cial

/Nat

ional

Citizens: gain a greater

sense of ownership of the

health care system during

dialogue and go beyond

their roles as users or

consumers, to seeing

themselves as owners,

investors, and

stakeholders. Engagement

helps to clarify how

deeply held values are

evolving with changing

circumstances.

Engagement works when

policymakers are ready to

invest in learning and

listening, when they are

ready to open up a

discussion on the

conflicted choices and

trade-offs, and when they

place a high value on the

process of public learning. C

om

munit

y S

yst

em May not be

generalizabl

e to other

countries

Results indicate a

wide gap between

professionals who

have been reforming

healthcare system

efficiencies in

Canada and what

citizens are saying –

namely, their

experiences in the

day to day care has

not improved - nor

do people believe it

is more sustainable.

Citizens are prepared

to adopt new ways

of interacting with

service providers,

which policymakers

have usually

assumed would be

resisted.


80

12 Canadian

Institutes of

Health

Research,

(2014)

Canada

The Strategy

for Patient-

orientation

Research

(SPOR).

Putting

Patients First

Patient

Engagement

Framework.

SPOR Patient

Engagement

Framework is

designed to

establish key

concepts,

principles and

areas for

patient

engagement to

be adopted by

all SPOR

partners.

Gre

y L

iter

ature

Nat

ional

, P

rovin

cial

The consultation sought input

from PPE experts on their

desired outcomes for patient

engagement included:

creating inclusive mechanisms

and processes; establishing

capacity for respectful

collaboration is amongst

patients, researchers and health

care providers; valuing the

experiential knowledge of

patients as the part of the

research process; and,

informing and co-directing

research via patients.

Co-c

reat

ing m

ult

iple

par

tner

s Some

limitations

of

coproductio

n - results

may not be

generalizabl

e

Successful patient

engagement

includes: 1 inclusive

mechanisms and

processes where

patient involvement

is included at all

levels; 2 multi-way

capacity building

ensures that the

capacities of

patients, researchers,

and health care

providers are

developed in order to

work effectively

together; 3 multi-

way communication

and collaboration; 4

experiential

knowledge is valued

as evidence; 5

patient-informed and

directed research

approaches engage

patients in

collaborative

methods; 6 a shared

sense of purpose.


81

13 British

Columbia.

Office of

the Auditor

General.

(2008).

Canada

B.C.

To understand

the interest in

Canada — both

by the public

and their

governments -

for public

participation

(PP)

Understand

how

governments

strong in PP

practice were

approaching

this issue

Develop a

framework

intended to

assist the

public sector in

the design and

delivery of PP.

It also serves

as a

benchmark of

what good

practice

entails.

Gre

y L

iter

ature

Nat

ional

, P

rovin

cial

, In

tern

atio

nal

Governments in Canada are using PP to revitalize their relationships with other governments and with citizens. The Canadian public wants greater participation in government decision-making. Overall, the public are satisfied with their participation experiences, but disillusioned with the results. Successful PP is guided by well-defined principles, makes decisions more durable, and is becoming viewed as a mechanism of good governance. B.C. Government’s core values support the use of PP, but these values have not been translated into principles for conducting PP yet. The B.C. Government is conducting PP, but no formal government-wide guidance is available to ensure a reasonable process is followed and there is no process to ensure a consistent approach to PP across government.

Indiv

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

As government

engages on a wide

variety of issues and

across the public

engagement

continuum,

flexibility is key to

ensuring that the PP

design and methods

fit the appropriate

circumstances.

Government needs

to have the ability

and knowledge to

determine where

PPE would be most

beneficial and

cost-effective.

Government entities

should champion PP

and not have a

central agency

conduct it for them.

Some provincial and

municipal

governments in

Canada have lodged

the responsibility for

PP to a

communications

group or central

agency that promote

consistency and best

practice, build

capacity across

government

agencies, and act as

a resource for

government entities.


82

14 Capital

Health.

(2014)

Canada

Nova Scotia

Capital

Health

Outline Policy

Procedures for

Citizen

engagement

and person

centered care.

Capital Health

ensures its

decisions and

priorities

reflect the

needs of the

people it

serves by

engaging

patients and

citizens.

Gre

y L

iter

ature

Reg

ional

Pro

vin

cial

Transparent information

sharing is a foundational

to effective engagement

practice. All engagement

activities require reporting

to the public in a timely

manner to ensure

accountability.

Compliance with this

policy is tracked and

reported. All engagement

activity conforms to

recognized standards of

best practice by the

International Association

for Public Participation

(IAP2).

Indiv

idual

, C

om

munit

y, S

yst

em May not be

generalizabl

e to other

regions,

provinces,

countries

Effective

implementation of

policy includes: 1

establishing

expectations; 2

clearly describing

accountabilities re:

engagement; 3

establishing PPE

actions as a key

transformative

business process; 4

being publically

accountable; 5 being

responsive to

patients/ public; and,

6 achieving strategic

goals and

milestones.

15 Abelson, et

al., (2007).

Canada

To document

and interpret

the role of

multiple

contexts in

shaping the

design,

implementatio

n and

evaluation of

public

involvement

processes.

To assess the

performance of

a generic

public

participation

method with a

common set of

attributes.

Mix

ed M

ethod

Res

earc

h

Reg

ional

Results flag the critical

role played by decision

makers and the

organizations within

which they operate in

shaping PP

implementation processes.

Given the centrality of

their roles in these

processes, a more

comprehensive

understanding of their

expectations of and

apprehensions toward PP

is needed. Results

illustrate participants

expectations can change

throughout the

engagement process.

Com

munit

y ,

Sy

stem

May not be

generalizabl

e to other

health

polices in

different

countries

/states.

Need longer

timeframes for

studies to allow

more comprehensive

assessments of the

effects that

interventions may

have on

organizations and

the public. Focus is

required to identify

the most effective

formats for

presenting

information to

citizens, keep in

mind that not all

participants’

information needs or

expectations will

ever be met.


83

16 Thurston, et

al., (2005).

Canada

Develop a

theoretical

framework for

understanding

Public

Participation

(PP) in the

context of

regionalized

health

governance. Mix

ed M

ethodolo

gy

Res

earc

h

Reg

ional

Themes identified:

PP technique(s)

employed; which

participants are involved

in a particular

initiative, how and why

participants became

involved, who they

represent; profiles and

credibility of an initiative;

history and prior identities

of initiatives; formal

mandates of initiatives;

the actual functions of the

initiative; monitoring

of the health care sector’s

performance; and, the

formal and informal rules

of engagement of various

facets of the initiative.

Policy-making is a

complex political process

that is influenced by a

multitude of factors both

internal to and external to

the health region.

Com

munit

y Generalizab

ility of the

findings

could be

limited

because

only 5 case

studies were

involved.

From a policy

perspective, the

organizational and

social context

including the nature

of the issue being

addressed will be

limited if PP is

defined as a PP

technique. PP needs

to be considered in

the complexity of the

policy environment

– and may need to

affect the political

space of varying

levels of intersecting

policy environments.

There remains a

need to examine how

citizen participation

is linked to

accountability for

decision making.


84

17 Kovacs-

Burns,

Bellows,

Eigenseher,

Gallivan,

(2014)

Canada

Alberta

Alberta Health

Services

requested

scoping review

to inform the

contents of a

patient

engagement

resource kit for

patients,

providers

and leaders.

Qual

itat

ive

Res

earc

h

Pro

vin

cial

Patient engagement was

generally considered

beneficial to the health

care system in its policy

and planning activities.

Benefits: patient

engagement enabled the

health system to address

the right issues in an

appropriate way, design

programs, policy and

planning activities

specific to the needs of

both individuals and

special populations;

achieve better results; and

validate outcomes.

Limitations/Barriers

included: the lack of

political commitment at

all levels in the healthcare

system. Bureaucracy

barriers included

administrative procedures,

reporting and lack of

technical skills required.

Indiv

idual

Com

munit

y S

yst

em Language

and

confusing

terminology

specific to

patient

engagement

was a

challenge

The synthesis and

findings in the

literature include

fifteen similar terms

and definitions for

‘patient

engagement’, 17

various engagement

models, numerous

barriers and benefits,

and 34 toolkits for

patient

engagement and

evaluation

initiatives. Findings

also included

benefits and barriers

(in the findings

column).


85

18 Government

of

Newfoundla

nd and

Labrador.

(n.d.)

Canada

Newfoundla

ndand

Labrador

Provide useful

information for

departments to

implement

successful

public

engagement

processes and

activities. G

rey L

iter

ature

Pro

vin

cial

R

egio

nal

When the public is

engaged, government can

utilize its expertise to

make better quality

decisions in which

residents have a higher

level of confidence.

Quality engagement will

ultimately lead to better

policies and decisions,

reduced conflict,

enhanced civic

participation and a

strengthened democracy

overall.

Indiv

idual

C

om

munit

y S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

Possible impacts of not

engaging the public

include: 1 setbacks and

increased costs due to

stakeholder lobbying; 2

lack of project and

decision buy-in from

stakeholders; and, 3 loss

of public credibility.

Many governments have

accepted that there is a

need to do a better job of

engaging the public in

policy and decision-

making. High quality

engagement processes

are required to be

successful. This requires

planning, adequately

resourcing, and

recognizing and utilizing

the knowledge possessed

by the public through

engagement.

19 Church,

Saunders,

Warke, et

al. (2002)

Canada

Provide

decision-

makers a

clearer idea of

challenges and

best practices

in citizen

participation in

healthcare.

Sec

ondar

y R

esea

rch

Nat

ional

Pro

vin

cial

A challenge in the policy

process is that it is

complex, uncertain and

non-linear. Government

policymakers managing

the complexity to achieve

political objectives -

occurs within short

timelines and is often the

priority.

C

om

munit

y

Sy

stem

Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Enhancing citizen

participation in

health decision-

making involves

developing

appropriate

engagement

structures and

processes.

A commitment of

time, energy and

financial resources;

creating trust among

academics, public

health practitioners

and community

members is required

to be successful.


86

20 Institute of

Public

Administrat

ion (IPAC),

MNP LLP,

Fasken

Martineau.

(2013).

Briefing

document

specific to

healthcare

governance

system in each

jurisdiction.

Information

briefing for

healthcare

leaders to

explore how

healthcare

governance

models work at

the provincial,

regional and

local levels

within our

national

context.

Gre

y L

iter

ature

Pro

vin

cial

Nova Scotia - BILL NO. 1

Health Authorities Act,

2014, involved public

engagement plans.

Alberta Health Services is

responsible for fostering

community engagement

via 12 Health Advisory

Councils and partners

with multiple non-profit

organizations. System-

wide quality performance

measures / indicators

measure include patient

engagement. Ontario,

Local Health Integration

Act, Local Health

Integration Networks

(LHINs) performance

agreements include 3 year

Integrated Health Service

Plans (IHSPs) involving

significant community

and stakeholder

engagement. Prince

Edward Island (PEI) -

Health PEI (a Crown

Corporation) is

accountable to the

Department of Health and

Wellness. Health PEI -

Committees of the Board

include: Quality and

Safety, Compliance and

Monitoring, and, Public

Engagement.

Syst

em Brief did

not include

Yukon and

the

Northwest

Territories

due to lack

of available

data. The

paper does

not address

federal

health

issues, nor

Aboriginal

health

issues.

May not be

generalizabl

e to other

countries or

states.

Healthcare system is

managed within an

environment of global

fiscal constraint. All

provincial governments

are facing severe fiscal

pressures. Jurisdictions

in Canada have adapted

and modified their

healthcare governance

systems to better manage

their system in the

context of these

pressures. There is

increasing recognition of

the role that systems-

level governance plays in

managing these

challenges. Provincial,

regional and local

models of care may all

have an effect and role in

ensuring quality of care,

equity, and access and in

managing cost pressures

and furthering

integration (including

patient and public

engagement).


87

21 Ansari, &

Andersson,

(2011).

UK

Examines

whether

economic

analysis poses

a threat or an

opportunity

for future

public

participation. Q

ual

itat

ive

Res

earc

h

Nat

ional

Patient and Public

Involvement (PPI) is

viewed as a democratic

right. Governments are

investing large amounts of

public resources (taxes)

into PPI. PPI in decisions,

services and policy has

increased substantially.

Voluntary, public and

private sectors have

assigned resources to PPI,

ranging from setting up

long-term structures (local

strategic partnerships) to

one off events (citizens’

juries).

Syst

em The

limitations

and

implications

of using

research

conducted

by

INVOLVE

2005

(primary

research

included

qualitative

interviews

with leading

thinkers

thus there

may be a

source of

bias in

interpretatio

n of

examples).

Need to improve the

evidence base on

which participation

decisions are made;

the lack of economic

information about

participation causes

barriers. Two

arguments included:

mainstream

economic theory is

not able to explain

participation and is

unsuitable for

assessing

participation; and,

economic

measurement is

necessary because

PPI constitutes

investments of

public (taxpayer)

resources.

22 Martin,

2009).

UK

Analyze the

justifications,

rational

differences,

tensions,

challenges and

consequences

of public

participation

(PP) practice

and policy.

Sec

ondar

y R

esea

rch

Reg

ional

, P

rovin

cial

, N

atio

nal

Contemporary policy

related to justification of

PP demands more

complex roles of involved

publics which call upon

various qualities required

for governing the interface

between state and society.

Experiential

representativeness of the

rationales tends towards a

knowledge based

contribution.

Syst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Criteria (e.g.,

requirements set out

for volunteers) for

participation sought

from government

may tell us

something about

what policymakers

want from citizen

participation.


88

23 Hogg,

(2007)

UK

Provide an

overview on:

the

effectiveness

of PPI; review

accountability,

independence,

consistency of

performance,

representation;

and how

arrangements

for the NHS fit

within the

wider agenda

of citizenship

and democratic

renewal.

Qual

itat

ive

Res

earc

h

Reg

ional

, P

rovin

cial

, N

atio

nal

Consumer voices may

help bridge the NHS and

local authorities to

improve the co-ordination

of services and planning

between the NHS and

local authorities through

members. Patients taking

part in decisions, as

insiders help to make

providers more responsive

to patients’ experiences.

The public involved

through independent local

advisory forums of

residents provides a

mechanism for

determining health

priorities and policies.

LINks may contribute to

local democracy by

integrating PPI into civil

renewal and active

citizenship and the new

localism. Since the 1990’s

health service policy

reforms have fostered

active citizenship,

overcoming social

exclusion and promoting

PPI in decision-making at

local levels.

Syst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of the

examples.

Difficulties in

recruiting volunteers

have occurred due to

multiple reasons

(e.g., duplication and

overlap, consultation

fatigue, and

disillusionment

within the voluntary

sector). PPI in

England is

undergoing a further

period of instability

and the risks of

getting it wrong

again are high –

threatening a loss of

public goodwill and

a waste of resources.

What was not

addressed was the

nature of

representation,

accountability and

governance. This

may have left NHS

open to criticisms of

being undemocratic,

unrepresentative and

inconsistent.


89

24 Edgaman-

Levitan,

Bracy &

Howitt,

(2013).

UK

How can

involving

people in

healthcare be

used to achieve

change?

The report

introduces a

new Global

Health

Partnership

Framework to

clarify

opportunities

for innovation.

Sec

ondar

y R

esea

rch

Glo

bal

\ N

atio

nal

Engagement is the key to

innovation, promotes

effective stewardship and

utilization of limited

resources. Benefits and

barriers to engagement

and opportunities for

action are outlined. What

is needed in public policy

are structures for

supporting engagement,

such as a patient centered

measurement system,

media partnerships that

assist in effective public

communication, and

aligned incentives.

Indiv

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

Recommendations

includes: directly

engaging the public

in policy-making,

using multiple

methods and

mechanisms;

examining and

aligning incentives

for the public,

healthcare

organizations and

governmental

agencies to promote

engagement of the

public.

25 Martin,

(2009)

England

UK

Public

Participation

(PP) analysis –

specific to

differences and

overlaps

between

rationales

about the

knowledge that

the public can

provide.

Examines

challenges

implementing

a vision for PP

into practice

(including

policy and

gaps in

practice).

Qual

itat

ive

Res

earc

h

Pro

vin

cial

, N

atio

nal

PP may improve

accountability of public

administration where

there is democratic

insufficiency. PP may

increase the legitimacy of

public institutions that

may contribute to the

democratic renewal of

Society through

challenging citizen

disengagement. Extensive

roles are provided to

individuals who have a

combination of

competencies and skills.

These competencies

provide them the ability to

translate concerns of a

particular public – into an

issue amenable to

interventions /discussion

with policymakers and

other public servants.

Indiv

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples

PP in policy helps to

fulfill the need for

those charged with

the delivery of

public services to

better understand the

needs and wishes of

the public they

serve.


90

26 Mullen,

Hughes &

Vincent-

Jones,

(2011)

UK

Illuminate

evaluating the

democratic

potential of the

PPI framework

legislation in

healthcare

governance in

England. Q

ual

itat

ive

res

earc

h

Nat

ional

A deliberative approach to

PP may contribute to

increased confidence in

the legitimacy of

decisions. This approach

included: limited debate

within small governing

groups (risk is that the

collective group may not

have relevant ideas and

challenges) or, allow a

broader range of

participants (to provide

great opportunity for

diversity of ideas,

challenges).

Syst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

The risk with a

broader range of

participants is an

overly complicated

process.

Deliberative

involvement relies

on the willingness of

key leaders to

respond

appropriately to

ideas and challenges

in their policy

decisions and

implementation.

27 Scottish

Government

(2007)

NHS

Scotland

Action Plan for

Change

captures a

vision for the

NHS based on

a shift where

people are

viewed as

“patients” to a

seeing the

Scottish people

and the staff of

the NHS as

partners, or co-

owners, in the

NHS.

Gre

y L

iter

ature

Nat

ional

Three main components

of Better Health, Better

Care Action Plan. The

Plan sets out a programme

and targets action to

accelerate progress. This

new philosophy involves

partners having real

involvement and a voice

that is heard. Actions

include: strengthen public

ownership by: improving

rights to participate;

embedding patient

experience in performance

management;

strengthening the

approach to service

improvement - the feature

of Scotland’s NHS.

Syst

em The

generalizability of the

findings

could be

limited

because of

the

diversity of

influence of

the

socio-

political

contexts.

Intent is to shift

NHS ownership and

accountability to

Scottish people and

with the staff of the

NHS. This positions

Scotland citizens not

just as consumers -

with only rights - but

as owners - with

both rights and

responsibilities. A

mutual NHS requires

shifts in control,

status and

participation that

will take time.


91

28 Directorate

Office of

the Chief

Medical

Officer,

Northern

Ireland,

(2007)

Assist Health

and Social

Care (HSC)

organisations

to

improve the

quality and

effectiveness

of user and

public

involvement as

an integral part

of effective

governance

and to support

the

development

of a more

patient and

user-centred

HSC.

Gre

y L

iter

ature

Nat

ional

R

egio

nal

Seeks to clarify and

standardise

implementation practice

policy requirements and

statutory responsibilities

re: user and public

involvement. Guiding

document includes

principles of good practice

and provides a framework

of self-evaluation to assist

HSC organisations to

integrate PPI into the

organisation’s

governance. Statutory

requirements to consult

and involve people are

embedded in legislation.

The purpose of this

policy: PPI in every HSC

organisation; promote

greater uniformity and

consistency in PPI activity

across HSC organisations;

improve the quality of the

individual’s experience of

HSC services by

involving people in plans

and decisions about their

own care or treatment and

learning from

their experiences to

improve service delivery;

ensure HSC organisations

take the public’s views

into account in planning,

commissioning, delivering

and evaluating services;

and, support the

integration of PPI into

individual and

organisational clinical and

social care governance

arrangements within.

Indiv

idual

, C

om

munit

y, S

yst

em Socio-

political

contexts

may serve

as a source

of bias in

interpretatio

n of

examples

Successful PPI

requires genuine

commitment from

senior managers and

all staff. This

requires developing

a culture of

openness, respect,

listening and a

willingness to

change within

workplaces. Genuine

PPI takes time and

commitment to

achieve. Developing

the right culture is

one of the biggest

challenges in

ensuring PPI is both

meaningful and

effective. Effective

PPI can change

peoples’ experience

of services and the

quality and safety of

care. PPI can also

increase service

responsiveness and

accountability to

local communities

and the wider

population. Staff

morale and

satisfaction can also

improve when staffs’

realize they are

providing a

responsive service

that is valued by

individuals and

appreciated by the

wider public.


92

29 Warbuton,

Wilson, &

Rainbow,

(2012)

Public

engagement is

viewed as a

central element

in public

policy

processes. This

evaluation

provides case

studies to

eliminate key

learning’s.

Gre

y L

iter

ature

Nat

ional

Evaluation is relatively

new in the context of

public engagement.

However, it is

increasingly vital as

engagement becomes

more widespread.

Therefore the need to

assess the effectiveness of

different approaches, to

increase accountability

and to learn from

experience becomes

paramount.

Indiv

idual

, C

om

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Public engagement

evaluation that is

specific to policy

should help answer

three simple

questions: 1 Has the

initiative

succeeded?; 2 Has

the process worked?

and, 3 What impact

has the process had?

30 Public and

Patient

Experience

and

Engagement

Team,

(2011)

Policy

Estimates

Reference

15822 –

Describes key

issues for

LINks, their

organisations

and local

authorities

during

transition prior

to

HealthWatch

being

established.

Qual

itat

ive

Res

earc

h

Reg

ional

, N

atio

nal

HealthWatch

(independent consumer

champion for the public

locally and nationally)

Transition Plan focuses on

building upon successes

and engaging people in

decision making who are

affected by decision about

local services, supporting

individual and community

engagement, and ensuring

consumer voice has

influence locally and

nationally.

Indiv

idual

, C

om

munit

y, S

trat

egic

Socio-

political

contexts

may serve

as a source

of bias in

interpretatio

n of policy

plan.

Local HealthWatch

focuses on transition

from LINks

introduced in 2008

with PPI at strategic

levels to one

designated to

planning of local

health systems,

access and make

choices about care

and an advocacy

complaint

mechanism.


93

31 House of

Commons,

Health

Committee

(2007)

Patient and

Public

Involvement

(PPI) in the

NHS – Third

Report of

Session 2006-

07

Volume 1

Gre

y L

iter

ature

Nat

ional

The conflation of multiple

terms for PPI and the

confusion about the

purpose of involvement

has led to muddled

initiatives and uncertainty

about what should be

done to achieve effective

PPI. However, PPI has the

potential to play a key role

in both NHS and Social

Care services by bringing

about service

improvement and

improving public

confidence. Patients’

views can help refocus

decision makers on issues

that are critical to a

patient’s experience of

healthcare but which also

may be overlooked by

conventional management

approaches. Involving

patients can also provide a

further layer of quality

assurance for things that

should clearly form part

of mainstream clinical and

hospital management but

may benefit from ongoing

reinforcement.

Syst

em Socio-

political

contexts

may serve

as a source

of bias in

interpretatio

n of this

Bill.

Public trust is earned

and easily broken.

Recommendation:

Where patient and

public viewpoints

can make a

meaningful

contribution to

debate, consultation

on national policy

may be valuable

both in terms of

enhancing

accountability and

improving policy

making, even if final

decisions must

ultimately rest with

elected

representatives.


94

32 House of

Commons

Public

Administrat

ion Select

Committee

(2013)

Public

engagement in

policy-making

Bill Ordered

by the House

of Commons

UK

Gre

y L

iter

ature

Nat

ional

Engaging the public and

experts in debates about

policy and in the policy-

making process itself, and

establishing a new

relationship with the

citizen who becomes a

valued partner to identify

problems will lead to new

thinking and proposed

solutions. Further, citizen

engagement in policy

making helps institutions

to be aware of public

concerns and expectations

and supports real-world

problem solving.

This is a departure from

traditional approaches

which have occurred after

the Government has

already determined a

course of action.

There is considerable

potential for open and

contested policy-making

to deliver genuine public

engagement and there is

also a risk of public

disappointment and

scepticism about the

impact of their

participation, and the

opinion that Government

listens only to the media

and lobbyists.

Syst

em Socio-

political

contexts

may serve

as a source

of bias in

interpretatio

n of this

Bill.

Policy-making

processes debates

need to take place

outside Government

and involve public

and community.

Ultimate

responsibility and

accountability for

leadership must

remain with

Ministers and senior

civil servants.

Government

leadership is

important for

effective

strategic thinking -

choosing between

different arguments,

reconciling

conflicting opinions

and arbitrating

between different

groups and interests.

Thus there can be no abdication of that leadership. Government leaders

must commit

sufficient time and

resources for public

engagement.


95

33 Queensland

Government

, (2012)

Health

Consumers

Queensland

(HCQ)

Framework

provides a

guide for

supporting

the

development

of effective

consumer and

community

engagement

strategies.

Processes for

state, national

and

international

approaches to

consumer and

community

engagement

reflect there is

no ‘one size

fits all’

approach.

Gre

y L

iter

ature

Reg

ional

, S

tate

N

atio

nal

The system level of

engagement focuses on

how consumers and

communities influence,

engage and provide input

on health policy, reform

and legislation at the

system level across local,

state and Commonwealth

jurisdictions. The Local

Health and Hospital

Networks (LHHNs) have

a consumer engagement

policy specifically,

research and ethics, and

ensures that the consumer

voice is represented on

committees that undertake

debate and discussion

regarding ethical and

research matters. The

health service

organisations have

consumer and community

engagement mechanisms

in place to influence and

input into health policy

and initiatives from a

consumer and community

perspective.

Indiv

idual

, C

om

munit

y, S

trat

egic

May not be

generalizabl

e to other

countries/

states

The HCQ

Framework has

application across

public and private

health service

organisations

delivering health

promotion,

prevention, primary,

acute, sub-acute and

community health

services.


96

34 Cavaye,

(2004)

Australia

Outline and

illuminate

insights from

community

engagement

experiences,

suggest new

approaches,

and describe

actions that

would better

support citizen

participation.

Sec

ondar

y R

esea

rch

Nat

ional

While government

affects communities and

vice versa, there is a limit

to the engagement and

influence

government has with

communities. Risks:

government embracing

community engagement

with traditional

assumptions and

principles of service

delivery and technical

assistance. Genuine

partnership requires

different assumptions,

values and principles.

Without new thinking,

government agencies can

subtly develop mindsets

that support the

techniques and structures

of community

engagement without the

cultural change. Listening

better incorporates a

dialogue where each is

seen to add value to the

other.

Syst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Government at all

levels

in Australia are

adopting new

processes of

community

engagement by

reconnecting

government with

fostering citizenship

and engaging

communities. The

author argues that a

more flexible system

of governance is

required to allow

government agencies

to better manage the

dilemmas and trade-

offs inherent in true

community

engagement.

Moreover, this

appeals for changes

in policy, structures

and practice as well

as demands changes

in the assumptions,

values and culture of

public

administration.

35 McCaffery,

et al.,

(2011)

Australia

Authors

describe the

current

position of

shared

decision

making (SDM)

within the

context of the

Australian

healthcare

system.

Qual

itat

ive

Res

earc

h

Nat

ional

The Consumer’s Health

Forum of Australia (an

independent member-

based non-government

organisation which is

funded by the Australian

Government) nominates

and supports consumer

representation with

government, industry and

professional

organisations.

Com

munit

y, S

yst

em Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

System related

barriers included:

time constraints –

cited as being a

critical issue with

nursing and general

practice; division of

labour and power

issues; geographic

isolation, no overall

policy framework

for SDM.


97

36 Department

of Human

Services,

Victoria

Government

(2006)

Australia

“Doing it with

us not for us”

participation

policy

provides

guidance on

how all

stakeholders,

consumer,

carer, and

community

participation

across the

health service

system can all

work together.

Gre

y L

iter

ature

Nat

ional

Core characteristics of

patient and public

engagement specific to

using knowledge as a

resource in co-producing

value in health care

system policy. There are

seven guiding objectives

of the policy that states

how participation can be a

key to improving health

policy, care and treatment,

and the wellbeing of all

Victorians. Three key

objectives of partnerships

include: making joint

decisions, agree on

processes and collectively

own the outcomes.

Indiv

idual

, C

om

munit

y, S

trat

egic

Socio-

political

contexts

may serve

as a source

of bias in

interpretatio

n of this

policy

document.

Principals underpin

how the policy

should be

implemented into

action. Partners

agree to work

together and decide

on policy directions,

research, plans,

treatment or care.

The priority actions

provide specific

direction on what

needs to be achieved

to meet the

objectives. Broad

policies and

guidelines drive the

participation policy

and support the three

key reasons why we

value participation:

improvement,

democratic right and

accountability.


98

37 Carmen, et

al., (2013)

United

States

Propose a

multi-

dimensional

Framework for

patient and

family

engagement

(e.g.,

consultation to

partnerships to

shared

leadership)

that includes

decision-

making

authority.

Qual

itat

ive

Res

earc

h

Reg

ional

, P

rovin

cial

, N

atio

nal

Authors posit that policy

makers as well as

healthcare professionals at

all levels – clinicians,

administrators, member of

professional societies, and

researchers play critical

roles in partnering with

patients and families and

supporting them in new

roles.

Indiv

idual

, C

om

munit

y, S

trat

egic

Self-

reported

factors may

serve as a

source of

bias in

interpretatio

n of

examples.

Emerging evidence

links patient

engagement to

improved outcomes

warrants attention.

A process involving

patients and multiple

stakeholders may

help prioritize gaps

and make

recommendations

throughout the

measure

development. Efforts

need to be made to i)

raise patients’

awareness about the

benefits of

engagement; ii)

encourage and

support patients’

increasing

responsibility and

leadership.

Healthcare

organizations and

policy makers need

to embrace new

norms and make

changes in their

culture, processes,

and structure.


99

Appendix F

Mind Map: Interconnections – Patient and Public Engagement (PPE) Policy

Government Role in PPE Policy Provide Government Leadership

Ensure there are Formal PPE Mechanisms Develop Clear Accountabilities &

Responsibilities

patients, communities, providers,

organizations, educators,

researchers, policymakers,

health administrators

Reasons healthcare policy-makers engage patients/public

improve collaboration

knowledge sharing

accountability

improve health system

decrease fragmentation

ensure equity

patient centered care

effective health system

more diverse ideas, perspectives, suggestions

policies more accessible/responsive to citizens

better informed decisions

limited resources available

inform healthcare systems policy

social capital

governance accountability

citizens’ rights

democratic legitimacy

Mine the Gaps…Roadblocks...Barriers

EVIDENCE, EVALUATION, RESEARCH

Commitment & Time, Culture Shift,

Uncertainties/Complexities, Competencies, Global Fiscal

Restraint, Inquire, Listen & Seek to Understand, Social

Inclusion, Interactivity Between Internal/External Stakeholders

Patient Public

Engagement Policy


100

Appendix G

Data display of the Patient and Public Engagement (PPE) influencing factors, levels of engagement and policy

# Multiple Stakeholders -

Influencing Factors for

PPE

Why healthcare policy-makers are and should engage in PPE Levels of

Engagement

Policy Levels

Pat

ient

/ P

ubli

c

Pro

vid

er(s

) /

Org

aniz

atio

ns

Aca

dem

ics

/ re

sear

cher

s /

univ

ersi

ty

Poli

cym

aker

s /

Adm

inis

trat

ors

Mec

han

ism

for

ongoin

g P

PE

Impro

ve

coll

abora

tion

know

ledge

shar

ing

Acc

ounta

bil

ity

Red

uce

hea

lth d

eliv

ery

frag

men

tati

on /

effe

ctiv

e h

ealt

h

syst

em

Ensu

re e

quit

y

Pat

ient

cente

red c

are

More

div

erse

id

eas,

per

spec

tives

, su

gg

esti

ons

Poli

cies

more

acc

essi

ble

and

resp

onsi

ve

to c

itiz

ens

Bet

ter

info

rmed

dec

isio

ns

Lim

ited

res

ourc

es a

vai

lable

Info

rm h

ealt

hca

re s

yst

ems

poli

cy

Soci

al C

apit

al

Impro

ved

gover

nan

ce,

acco

unta

bil

ity

Cit

izen

s’ r

ights

Dem

ocr

atic

Leg

itim

acy

Com

munit

y/O

rgan

izat

ion

(e.g

., o

rgan

izat

ional

des

ign,

gover

nan

ce)

Syst

em P

artn

er -

lea

der

ship

, co

-

des

ign,

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ed d

ecis

ion m

akin

g.

Poli

cy a

t th

e R

egio

nal

Lev

el

Leg

isla

tio

n, R

egula

tion, P

oli

cy

at t

he

Pro

vin

cial

/ c

ounty

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vel

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oli

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at t

he

Nat

ional

, F

eder

al l

evel

1 Meads, Griffiths, & Goode.

(2007)

X X X X X X X X X X X X X X X X X X X X X X X X

2 Bovaird, (2007) X X X X X X X X X X X X X X X X X X X X X X

3 Conklin, Morris, & Nolte,

(2012)

X X X X X X X X X X X X X X X X X X X X X X

4 Oxman, et al. (2009) X X X X X X X X X X X X X X X X X X X X X X

5 Lenihan, (2012) X X X X X X X X X X X X X X X X X X X X X X

6 Tritter & Koivusalo (2013) X X X X X X X X X X X X

7 Tritter, & McCallum, (2006). X X X X X X X X X X X X X X X X X X X X

8 Boivin, et al., (2014) X X X X X X X X X X X X X X X X X X X X X

9 Legare, Stacy, & Forest,

(2007)

X X X X X X X

X X X X X X X X X X X


101

# Article Multiple Stakeholders -

Influencing Factors for

PPE


Engagement

Policy Levels

Pat

ient

/ P

ubli

c

Pro

vid

er(s

) /

Org

aniz

atio

ns

Aca

dem

ics

/ re

sear

cher

s /

univ

ersi

ty

Poli

cym

aker

s /

Adm

inis

trat

ors

Mec

han

ism

for

ongoin

g P

PE

Impro

ve

coll

abora

tion

know

ledge

shar

ing

Acc

ounta

bil

ity

Red

uce

hea

lth d

eliv

ery

frag

men

tati

on /

effe

ctiv

e h

ealt

h

syst

em

Ensu

re e

quit

y

Pat

ient

cente

red c

are

More

div

erse

id

eas,

per

spec

tives

, su

gg

esti

ons

Poli

cies

more

acc

essi

ble

and

resp

onsi

ve

to c

itiz

ens

Bet

ter

info

rmed

dec

isio

ns

Lim

ited

res

ourc

es a

vai

lable

Info

rm h

ealt

hca

re s

yst

ems

poli

cy

Soci

al C

apit

al

Impro

ved

gover

nan

ce,

acco

unta

bil

ity

Cit

izen

s’ r

ights

Dem

ocr

atic

Leg

itim

acy

Com

munit

y/O

rgan

izat

ion

(e.g

., o

rgan

izat

ional

des

ign,

gover

nan

ce)

Syst

em P

artn

er -

lea

der

ship

, co

-

des

ign,

shar

ed d

ecis

ion m

akin

g.

Poli

cy a

t th

e R

egio

nal

Lev

el

Leg

isla

tion, R

egula

tion , P

oli

cy

at t

he

Pro

vin

cial

/ c

ounty

/ le

vel

Leg

isla

tion R

egula

tion , P

oli

cy

at t

he

Nat

ional

, F

eder

al l

evel

10 Sheedy, (2008) X X X X X X X X X X X X X X X X X X X X X 11 MacKinnon, et al. (2003) X X X X X X X X X X X X X X X X X X X X X 12 Canadian Institutes of Health

Research (2014)

X X X X X X X X X X X X X X X X X X

13 British Columbia. Office of

the Auditor General (2008).

X X X X X X X X X X X X X X X X X X X X X

14 Capital Health. Policy and

Procedure (2014).


15 Abelson et al (2007) X X X X X X X X X X X X X X X X X 16 Thurston, et al (2005) X X X X X X X X X X X X X X 17 Kovacs-Burns, et al (2014) X X X X X X X X X X X X X X X X X X X X X X 18 Government of

Newfoundland & Labrador,

(n.d.)

X X X X X X X X X X X X X X X X

19 Church, et al., (2002)

X X X X X X X X X X X X X X X X X X


102


Influencing Factors for PPE


Engagement

Policy Levels

Pat

ient

/ P

ubli

c

Pro

vid

er(s

) /

Org

aniz

atio

ns

Aca

dem

ics

/ re

sear

cher

s /

univ

ersi

ty

Poli

cym

aker

s /

Adm

inis

trat

ors

Mec

han

ism

for

ongoin

g P

PE

Impro

ve

coll

abora

tion

know

ledge

shar

ing

Acc

ounta

bil

ity

Red

uce

hea

lth d

eliv

ery

frag

men

tati

on /

effe

ctiv

e h

ealt

h

syst

em

Ensu

re e

quit

y

Pat

ient

cente

red c

are

More

div

erse

id

eas,

per

spec

tives

, su

gg

esti

ons

Poli

cies

more

acc

essi

ble

and

resp

onsi

ve

to c

itiz

ens

Bet

ter

info

rmed

dec

isio

ns

Lim

ited

res

ourc

es a

vai

lable

Info

rm h

ealt

hca

re s

yst

ems

poli

cy

Soci

al C

apit

al

Impro

ved

gover

nan

ce,

acco

unta

bil

ity

Cit

izen

s’ r

ights

Dem

ocr

atic

Leg

itim

acy

Com

munit

y/O

rgan

izat

ion

(e.g

., o

rgan

izat

ional

des

ign,

gover

nan

ce)

Syst

em P

artn

er -

lea

der

ship

, co

-

des

ign,

shar

ed d

ecis

ion m

akin

g.

Poli

cy a

t th

e R

egio

nal

Lev

el

Leg

isla

tion, R

egula

tion , P

oli

cy

at t

he

Pro

vin

cial

/ c

ounty

/ le

vel

Leg

isla

tion R

egula

tion , P

oli

cy

at t

he

Nat

ional

, F

eder

al l

evel

20 Institute of Public

Administration of Canada, et

al., (2013)


21 Ansari & Andersson, (2011) X X X X X X X X X X X X X X X X X X X X X 22 Martin, (2009) X X X X X X X X X X X X X X X X X X X X 23 Hogg, (2007) X X X X X X X X X X X X X X X X X X X X 24 Edgaman-Levitan, Brady,

Howitt, (2013)


25 Martin, GP (2008) X X X X X X X X X X X X X X X X X X X

26 Mullen, et al., (2011) X X X X X X X X X X X X X X X X X X 27 Scottish Government (2007) X X X X X X X X X X X X X X X X X 27 28 Directorate. Office of the

Chief Medical Officer (2007)

X X X X X X X X X X X X X X X X X X X X X 28

29 Warburton, et al., (2011) X X X X X X X X X X X X X X X X X X X X X X X X

30 Public and Patient Experience

Engagement Team, (2011)

X X X X X X X X X X X X X X X X X X X


103


Influencing Factors for PPE


Engagement

Policy Levels

Pat

ient

/ P

ubli

c

Pro

vid

er(s

) /

Org

aniz

atio

ns

Aca

dem

ics

/ re

sear

cher

s /

univ

ersi

ty

Poli

cym

aker

s /

Adm

inis

trat

ors

Mec

han

ism

for

ongoin

g P

PE

Impro

ve

coll

abora

tion know

ledge

shar

ing

A

ccounta

bil

ity

Red

uce

hea

lth d

eliv

ery

frag

men

tati

on /

effe

ctiv

e h

ealt

h

syst

em

Ensu

re e

quit

y

Pat

ient

cente

red c

are

More

div

erse

id

eas,

per

spec

tives

,

sugges

tions

Poli

cies

more

acc

essi

ble

and

resp

onsi

ve

to c

itiz

ens

Bet

ter

info

rmed

dec

isio

ns

Lim

ited

res

ourc

es a

vai

lable

Info

rm h

ealt

hca

re s

yst

ems

po

licy

Soci

al C

apit

al

Impro

ved

gover

nan

ce,

acco

unta

bil

ity

Cit

izen

s’ r

ights

Dem

ocr

atic

Leg

itim

acy

Com

munit

y/

Org

aniz

atio

n

gover

nan

ce)

Syst

em P

artn

er -

lea

der

ship

, co

-

des

ign,

shar

ed d

ecis

ion m

akin

g.

Poli

cy a

t th

e R

egio

nal

Lev

el

Leg

isla

tion, R

egula

tion , P

oli

cy a

t

the

Pro

vin

cial

/ c

ounty

/ le

vel

Leg

isla

tion R

egula

tion , P

oli

cy a

t

the

Nat

ional

, F

eder

al l

evel

31 The House of Commons,

Health Committee, (2007)


32 The Public Administration

Select Committee, (2013)


33 Queensland Government,

(2012)

X X X X X X X X X X X X X X X X X X X X

34 Cavaye, (2004)


35 McCaffery, et al., (2011) X X X X X X X X X X X X X X X X X 36 State of Victoria, Department

of Human Services, (2006)


37 Carmen, et al., (2013)



104

Appendix H

Data Comparison Influencing Factors of PPE Policy / Country

Influencing Factors of PPE Policy Number of Sources/Country with PPE Influencing

Factors

PPE Influencing Factors - Multi-pronged

engagement with:

Multiple

Countries

UK CA AUS USA Total

1 a. Patients/public 7 12 13 4 1 37

2 b. Providers/organizations 6 10 12 2 1 31

3 c. Medical educators /academic 2 3 8 0 1 14

4 d. Researchers/medical science 4 9 7 1 1 22

5 e. Policymakers, health leaders, administrators 6 11 13 3 1 34

6 Mechanism/group for ongoing PPE 7 12 13 4 1 37

Elements why policy-makers engage patients and the

public

1 a. Improve collaboration, ,knowledge sharing 6 11 13 3 1 34

2 b. Accountability 7 10 12 2 1 32

3 c. Reduce health delivery fragmentation /

effective health system

7 1 5 3 1 17

4 d. Ensure equity 5 8 7 1 1 22

5 e. Patient centered care services 3 6 5 3 1 18

6 f. More diverse ideas / perspectives /

suggestions

7 11 12 3 1 34

7 g. Policies more accessible and/or responsive to

citizens

7 12 13 4 1 36

8 h. Better informed decisions / communication 6 11 13 4 1 35

9 i. Limited resources available 3 10 11 3 1 28

10 j. Inform healthcare system policy 7 10 12 4 1 34

11 k. Social capital 3 8 3 2 0 16

12 l. Governance/accountability 6 12 12 3 1 34

13 m. Citizens rights 1 9 8 3 0 21

14 n. Democratic Legitimacy 5 11 6 2 0 25

Levels of Engagement

Community/organization al 6 12 13 4 1 36

System Partner (e.g., leadership, shared

decision making, co-design)

7 12 13 4 1 37

Levels of policy

Regional/Community 7 11 13 4 1 36

Provincial/State 6 9 11 4 1 31

National/Federal 7 11 7 4 1 30

Total number of sources 7 12 13 4 1 37

c. & d. were originally coded as separate factors – and should be thought of as one category