how to involve citizens and patients in hta - who.int · the experience of cittadinanzattiva...

HOW TO INVOLVE CITIZENS AND PATIENTS IN HTA: the experience of Cittadinanzattiva

Francesca Moccia

Deputy Segretary General

Cittadinanzattiva – Rome, Italy

[email protected]

www.cittadinanzattiva.it

@francemoccia

3rd Global Forum on Medical Devices

CICG, Geneva, Switzerland, 11 May 2017

INTRODUCTION

The involvement of citizens - individuals, communities, patients and caregivers - in processes of HTA is raising increasing interest in the field of public health policies in several Countries

The economic crisis and the reduction of resources impel decision-makers to delicate choices, which require a discussion with communities and patients

3rd Global Forum on Medical Devices 2

INTRODUCTION: INVOLVING CITIZENS IN HTA, PRINCIPLES AND REALITY

Set of principles (HTAi, 2012):

• Hta recognized the value of patients’ experiences, the exclusive nature of their contribution to the evaluation process and defining its use;

• HTA promotes a greater understanding of its assessment processes by the patients who thus feel empowered to contribute, ….

FAQ (HTAi, 2012)

• Benefits from the involvement of patients in HTA: identifies areas of need of patients and their informal caregivers; increase transparency and accountability of hta processes; increase relevance and credibility of the recommendations;…


INTRODUCTION

In support of this involvement there are a literature and experiences (e.g. in Australia, Canada, United Kingdom, Scotland), from which barriers to the participation of citizens and patients still emerge

Although in Italy a national system on HTA has been in place for some years, a solid experience in involving citizens and patients in HTA doesn’t exist


INTRODUCTION: BARRIERS TO EFFECTIVE PARTICIPATION

Three types of barriers to participation of citizens in HTA processes (Deloitte, 2009):

• First barrier: information asymmetries among civic leaders and experts

• Second barrier: organization and timing

• Third barrier is economic

Patients’ experiences: a check list for groups of patients suggesting ways to produce high-quality information (HEE, 2009)

• a) Description of the Organization, b) of the disease and its impact, c) details of the benefits of the technology, ….


INTRODUCTION

In Italy, a recent survey, conducted by Agenas and Sihta and presented at the 9th Sihta National Congress in October 2016 shows a perception of the Health Technology Assessment by the Regional Public Administrations as a means of rationalizing of the spending and not as a tool of ensuring an introduction of appropriate new healthcare technologies

In particular, the research shows little interest in HTA and low involvement of stakeholders. Citizens and patients are seldom involved because this activity is perceived as a complication of the pathway, for which there are no standardized procedures, and that requires citizens and patients trained


AIM, METHODS, RESULTS

In order to fill this gap, Cittadinanzattiva since 2012 organised 4 training initiatives, through which about 100 people have been trained.

In the first 3 editions - Summer School for civic leaders on HTA, 2012, 2013, 2014 - the target was represented by leaders of patients’ and citizens’ associations.

The sources of funding of Summer schools for civic leaders on HTA are: Agenas (public body), Sihta (scientific society) Fiaso (association of health companies)

The sources of funding of Cittadinanzattiva are: Private companies 50%; Trade Associations 22%; Public and institutional funds 22%; Individuals 5%; Announcements and foundations 1%. The author declares not to have any conflict of interest.


Summer School for civic leaders on HTA


Summer School for civic leaders on HTA

Organised by Cittadinanzattiva, Rome, Italy with collaboration and support of Agenas, Fiaso and Sihta

First experience in Italy of HTA training aimed at leaders of organizations of citizens and

patients, with the aim of encouraging the development of a

community committed to promoting the involvement of competent civic individuals in the processes of HTA


AIM, METHODS, RESULTS

In the last edition - Autumn School for civic leaders on HTA, 2016 - the target was purposely mixed, including managers and operators of healthcare services, in order to encourage interaction and promote co-working with patients. The distinguishing features: focus on Patients’ Involvement, de-centralization of the training in favour of the territory (north-east of Italy), mixed target and a project work (an example of a “citizens’ and patients’ involvement Plan”)

For the Project Work, participants were divided into groups, with the following tasks: presenting a document during the Concluding Day and discuss it with institutional interlocutors about the “feasibility” of the idea.

The topic was citizens’, patients’ and users’ involvement in the following issues choosed by the groups: purchasing process of medical devices, introduction of beds for intermediate care, design of a Path Diagnostic Therapeutic Care for ADHD (Attention-Deficit/Hyperactivity Disorder)


CONCLUSIONS

The format thus designed has more chances to produce change in the reality. We are going to monitor in the next years the impacts of these experience on the decision-making system

The results of training:

100 participants

Guidelines «HTA and Civic Organisations», Cittadinanzattiva, Italy, 2014

Project works

Teachers' lessons, documents and bibliography


CONCLUSIONS


• As concerns the identification of the patients’ associations to involve, emerged the need of promoting also smaller associations with expertise to share

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• Regarding the recommendations on patients' involvement we adopted the document "Values and quality standards for patient involvement in HTA", outcome of the “Interest Sub-Group for patient/Citizen involvement in HTA” of HTA International.

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• The three project works, if improved with regard to methodology, could be implemented in the areas concerned. Of particular interest is the project on the purchasing processes at a regional level, which shows that patients’ evidence and users’ evaluations of medical devices could contribute to take more informed decisions.

• THANK YOU VERY MUCH FOR YOUR ATTENTION!

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