Research: In order to assess the current practice and trends regarding patient involvement in EU health projects Value+ will:- 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; - Make telephone and direct interviews with different stakeholders involved in the projects identified - project coordinators, managers; patients and/or patients’ representatives; EC officers - to explore opportunities and barriers in involving patients’ organisations as pro-active partners;- Do a literature review on patient involvement;- Carry a survey with EPF members to identify examples of patients’ involvement;- Hold focus groups with patients from various chronic diseases groups and who have an experience in EU supported projects- 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.
EventsValue+ 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 took place in Lithuania towards the end of 2008 and the second one will take place in Bulgaria during the second year of the project in 2009.
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).