zoë gray: involve: learning from 21 years at the helm of public involvement

INVOLVE: learning from 21

years at the helm of public

involvement

Copenhagen

2nd March 2017

Zoë Gray, Director of INVOLVE

@NIHRINVOLVE

www.involve.nihr.ac.uk

Talking about….

1. Lets understand each other: the terminology of involvement

2. Introducing INVOLVE

3. What's the value of involving patients and the public in research –

why do it?

4. Learning the lessons: what works in public involvement (what

doesn’t work)?

5. Emerging innovations and opportunities


1. What is involvement?

Involvement true partnership between

researchers, public and others (‘with’ and

‘by’); increasing quality, relevance to

improve health and wellbeing of the

population.

Engagement is hearing or being informed

about a project, service change etc.

Participation is having the research,

service redesign etc. done to you.

Who are the public?

Acroynms!


1. Involvement, Engagement,

Participation


2. INVOLVE today

INVOLVE EXECUTIVE

GROUPDirector + partner Director

leads + Advisory Gpmembers

(inc. new partnership RDS)

INVOLVE ADVISORY

GROUP

Appointed lay members - 16

INVOLVE

EMPLOYEES(9 inc. partner

secondment)

INVOLVE

Core team:

Delivers day to

day work &

partnership

Oversight of delivery

through Director to the

Department of Health

2 new public Advisory

Group members 2017

Advises on strategy and

work programmes,

especially public

involvement approaches -

4 new members 2017


2. Influence of Public and Patients

throughout INVOLVE’s work

2. INVOLVE Journey


2. Public involvement vision to 2025

“Going the Extra Mile”

Vision

“A population actively involved in

research to improve health and

wellbeing for themselves, their

family and their communities”

11 Recommendations


2. Positioning of INVOLVE: NIHR


2. Positioning – UK &

International

• UK: Devolved nations collaborations

• International: informal knowledge transfer through to

joint projects and consultancy

2. INVOLVE current focus

National Leadership Areas:

- Diversity & Inclusion

- Learning & Development

- Community, partnership, networks (Co-

production, International PPI network)

Regional Networks:

- National – regional – local intelligence

sharing & co-ordination

- Beyond NIHR boundaries

- Increasingly citizen led

Standards, Guidance,Tools

• PPI standards for self assessment

• National enquiry service

• People in Research: matchmaking

• Briefing notes for researchers

• Benefits advice service

Going the Extra Mile: Community, Co-ordination, Connectivity, Culture


3. What’s the value, why do it?


3. What’s the value, why do it? Improving

Research relevance

James Lind Alliance Priority

Setting Partnerships (PSPs)

• 43 completed PSPs -including

alcohol-related liver disease,

womb cancer and autism

• 36 active PSPs - Type 2

Diabetes, Emergency

Medicine, and people with

multiple conditions in old age

http://www.jla.nihr.ac.uk/making-a-

difference/funded-research.htm

http://www.jla.nihr.ac.uk/making-a-difference/funded-research.htm


Improving research design



Improving research effectiveness

‘The aim of patient and publicinvolvement

is to improve the quality,feasibility and translationalvalue of research...[This] is the first time

we can see that patient involvement is linked to higher likelihood of reachingrecruitment target – and as aresult, study success.’

ProfessorTil Wykes, Director, MHRN

‘Patient involvement in research boosts

success,’ The Guardian, 16/09/13

Paper reference: Ennis, L. et al. ‘Impact of patient involvementin mental health research: longitudinal study’BritishJournal of Psychiatry(Sept 2013) doi: 10.1192/bjp.bp.112.119818


3. Example 1: AQUA-Trial


3. Example 2: ProtecT Prostate Cancer

Trial

• 10 year trial funded by NIHR, reported in 2016

• Evaluating the effectiveness, cost effectiveness

and acceptability of the major treatment options

for men with localised cancer of the prostate:

surgery (radical prostatectemy), radiotherapy or

“watchful waiting”

• Patient interpretation of “watchful waiting” :

“watch while I die”

• PPI increased recruitment rates from 40 – 70%


4. Learning the lessons:

what works?


4. Learning the lessons:

what works?

Strong Voice

Weak Voice

Single

Interaction

Multiple Interactions

Organisational

ConcernsPublic

Concerns

ChangeConservation Organisation

Adapted from Gibson et al., 2012


5. Emerging innovations &

opportunities

5. Emerging innovation and

opportunities

Past

• Involvement

• The individual

• Clinical research

• Process

• Centrally controlled

• Partnership

• The committee room

• Patients, carers

• National focus

Present and future

• Co-production

• The community

• Health research

• Outcomes

• Citizen driven

• Collaboration

• Digital, tech, social media

• Consumers

• Global movement

Research + public insight + data + technology = ?

22

Thank youWebsite: www.involve.nihr.ac.uk

Email: [email protected]

Twitter: @NIHRINVOLVE

[email protected]

http://www.involve.nihr.ac.uk/

mailto:[email protected]


A Negative Cycle

Little knowledge of

what the public perspective can bring

Reluctant involvement

with inadequate resource

Little or no support for

public involved

Limited contribution

Confirmation that public

voice is of little value.


The Positive Cycle

Confident of what the

public perspective can bring

Support to involve with

sufficient resource

Public involved

supported and valued

Significant contribution

Improved quality of

the research

“We were able to

recruit above our

target within the

same budget and

timescales, across

all sites.”

“We would never

have recruited that

number of

participants without

the public

contributions.”


Going the Extra Mile

NIHR strategic direction for next 10 years

Improve quality and consistency

Strategic leadership shared responsibility

Impacts


Vision – One NIHR

11 Recommendations:

Communication and Information

Culture

Continuous Improvement

Co-production

Connectivity

Co-ordination

Community


NIHR ‘Going the Extra Mile’

2015 -2025

Key areas of work

• Improving access to opportunities for people

• Increasing the diversity of our community

• Developing organisations standards

• Supporting learning and development

• Establishing a regional network

• Defining and reporting impact

• Collaboration and partnership

• Co-production


Public Involvement Standards

NIHR INVOLVE and Central Commissioning Facility are leading on the

standards development in partnership with Health and Care Research

Wales.

Inclusive Opportunities

Working Together

Support and Learning

Communications

Impact

Governance

What has the public ever done for

UK health research?• A passion and commitment to be

‘part of it’ - public involvement,

citizen science, co-production

• Funding and volunteering which

has created a world-beating

medical research charity sector >

£1Billion per annum

• Public support for the cutting

edge– hybrid embryo, stem cell

research, genomics

• Altruism leading to research

participation by millions of people

over the last decade

Constituency and reach


3. What’s the value, why do

it?

• Funding and volunteering which has enabled us to grow a

world-beating medical research charity sector > £1Billion

• Public support for cutting edge medical research – hybrid

embryo, stem cell research.

• Altruism leading to research participation by millions of

people

• A passion and commitment to be ‘part of it’ meaning we are ahead

of other countries people in research design and delivery – public

involvement, citizen science,co-production

What have the UK public ever done for health

research?


• Examples of public involvement• as joint grant holders or co-

• applicants on a research project• involvement in identifying research priorities• as members of a project advisory or steering group• commenting and developing patient information leaflets or other

research materials

• undertaking interviews with

• research participants• user and/or carer researchers carrying out the research.

Improving access to research

zoë gray: involve: learning from 21 years at the helm of public involvement

Health & Medicine