VALUE+ - Promoting Patients’ Involvement in EU Supported Health-Related Projects (2008-2010)
Funded by
European Commission, DG Health and Consumers
Duration
From 2008 to 2010
Summary
Residents in health and social care institutions for people with mental health problems have a poor physical health status, resulting in reduced life expectancy. The basic principle of VALUE+ is that patients' meaningful involvement enhances health project results, which can contribute more effectively to policy towards patient-centred, equitable healthcare throughout the EU. Current EU health policy reflects this premise, but a concerted strategy is needed to achieve patient involvement in reality.
Objectives
To exchange information, experiences and good practices among key stakeholders in relation to the meaningful involvement of patients' organisations in EU supported health projects at EU and national levels.
Activities and outcomes
Activities
Research
In order to assess the current practice and trends regarding patient involvement in EU health projects Value+ will:
1) Research and analyse health projects implemented in the period 1998-2008 that were funded by various European Commission DGs and identify projects including patients' organisations and/or patients as partners.
2) Make telephone and direct interviews with different stakeholders involved in the projects identified - projects coordinators, managers, patients and/or patients' representatives, EC officers - to explore opportunities and barriers in involving patients' organisations as pro-active partners.
3) Do a literature review on patient involvement.
4) Carry a survey with EPF (European Patients' Forum) members to identify examples of patients' involvement.
5) Hold focus groups with patients from various chronic diseases groups and who have an experience in EU supported projects.
6) Identify 6-8 'show case examples' of patient involvement.
Testing
To
demonstrate how involvement of patients can be achieved in practice Value+ will
accompany and support selected EU health projects running concurrently and
which aspire to pro-active patients' involvement: up to five ongoing projects
supported by the Public Health Programme, three projects funded under the
Seventh Programme for Research (FP7) and up to two projects supported by the
Structural Funds, will be identified.
The modalities for cooperation and type of support will be jointly decided with
the organisations coordinating those projects based on their needs.
Events
Value+
will hold two events aiming at disseminating the findings and tools of the
project; foster exchange of experience and best practices and strengthening
political commitment on patient involvement. These events will strategically
take place in two new Member States because there is recognition that patients'
involvement in health projects and policy particularly in new EU MS is still
very much in its infancy.
Sharing experience and knowledge about European (new MS as compared to old MS)
traditions of patient participation and partnership of stakeholders of health
sector can motivate and be an agent for change and improvement. The meetings
will attract national and local policy-makers and civil society organisations,
thus contributing to the process of patient involvement in those MS. The first
one will take place in Lithuania towards the end of
2008 and the second one in Bulgaria during the second
year of the project.
A high profile Conference will be organised in 2009 under the auspices of the
Swedish Presidency in 2009. It will provide the opportunity to share the first
results of the project and the deliverables in draft form and review them so
that direction will be given for refinement and improvement. It will also be a
crucial platform for re-affirming and activating the current political
commitment on the involvement of patients; the target audience will be
wide-ranging and will include representatives of the Swedish Presidency,
European Commission and Governmental officials, Members of the European
Parliament and Council Representatives, key health stakeholders, research organisations,
think tanks and policy units in Brussels, project leaders from "show case
examples", patient organisations' representatives and the project partners
themselves.
Tools
VALUE+ Database will contain the
results of the research on EU funded health projects and the organisations that
implemented them.
VALUE+ Resource Kit for patient
organisations will provide patient organisations with
information on how they can be involved as equal partners, on principles around
consultation and how to use and disseminate projects outcomes in the most
efficient way. It will be disseminated to EPF membership and their member
associations in all of the Member States and it will also be
sent to other patients groups allies in Brussels and internationally.
The Resource Kit will be written in English and translated into German, French,
Spanish, Lithuanian and Bulgarian.
VALUE + Handbook for project leaders
and project proposers will provide specific information for
project leaders on how to involve patients' organisations and where to find the
most suitable partners. It will be disseminated to EPF members and allies and
copies will also be disseminated during PHEA organised and national
"Information Days" related to the call for proposal 2010. The Handbook will
also be disseminated to current project leaders, research and policy networks
that will be included on the project database.
VALUE+ Policy Recommendations on
effective strategies to involve patients' organisations in EU supported
programmes and projects will be developed as a result of the evidence-base
assessment. The recommendations will be targeted towards the European
Institutions and governments during the Swedish Presidency Conference and will
be disseminated through a series of one to one high level meetings set up by
health attaches, and major health conferences and events (European Health
Policy Forum, Health Forum Gastein).
Outcomes
- The project is expected to achieve a comprehensive overview and analysis of current practice and trends regarding patient involvement in EU health related projects.
- The project will develop tools meant to help different stakeholders to work towards increasing meaningful patient involvement.
Lead organisation
Partners
European Federation of Allergy and Airway Diseases Patients' Associations (EFA), Belgium
European Men's Health Forum (EMHF), Belgium
European Multiple Sclerosis Platform (EMSP), Belgium
Mental Health Europe (MHE), Belgium
Confederation "Health Protection" (KZZ), Bulgaria
Empirica (EMP), Germany
European Network of (Ex-)Users and Survivors of Psychiatry (ENUSP), Germany
European Institute of Women's Health (EIWH), Ireland
Health Policy Centre of Lithuania, Lithuania
Spanish Patients' Forum (FEP), Spain
Agrenska Foundation, Sweden
Retina International/Retina Europe, Switzerland
Website
www.eu-patient.eu/projects/valueplus/index.php
Contact person
Mari Fresu, MHE Health Policy Officer
