The ultimate objective of the project is to improve information and knowledge for the development of better public health and patient-centred healthcare systems across Europe, by supporting exchanges of information, experiences and good practice among patients’ organisations and other key stakeholders to encourage the meaningful involvement of patients’ organisations in EU supported health projects at EU level and at national level.
It is universally recognized that patients’ organisations’ involvement in health policy processes is crucial and should be given a high priority. The Public Health Programme lists of actions needed to implement its objectives, among which: “information and consultation on health and health-related matters at the Community level, involving all stakeholders such as patients’ organisations…".
Several projects and initiatives supported by PHP and other community programmes have tried to involve patients’ organisations and included, to varying degrees of success, their diverse experiences and knowledge. However, this remains fragmented, arbitrary and underrepresented and there is no clear overall picture to date on patient’s involvement and input in these projects. There is a need at EU level to analyse the current situation and identify strengths, weaknesses, opportunities and threats in the involvement of patients’ organisations in EU health related projects.
The project will map, analyse and monitor during its lifetime patients organisationsThe project will map, analyse and monitor during its lifetime patients organisations’ involvement in EU supported projects and will propose a set of policy recommendations on effective strategies to involve patients’ organisations in such initiatives. It will also provide specific information for project leaders on how to involve patients’ organizations and where to find the most suitable partners. Likewise, patients’ organizations themselves will benefit from a resource kit that will provide them 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. Coordinated by EPF, the project will be implemented in partnership with seven associate partners with expertise in patients’ advocacy, and health related awareness-raising, research and policy.
The project will provide a comprehensive evidence-based overview of current practice and trends regarding patient involvement in EU health projects and an expansive database of organisations and institutions involved, and an extensive analysis and reflection regarding critical success factors, challenges and hurdles regarding patient involvement. It will identify showcase examples of patient involvement to inspire and motivate key players at policy, programme and policy level.
The project will develop specific targeted resources including: VALUE + Policy Recommendations for policy makers, VALUE + Handbook for project leaders and promoters, VALUE + Resource Kit for patient organisations themselves to facilitate patient involvement in future projects.
The project will organise a conference under the Swedish EU Presidency in 2009, to re-affirm political commitment on patients’ involvement and present the key deliverables
The project is expected to increase awareness about patients’ rights, social cohesion, participatory democracy, freedom of choice and to contribute to a new culture where patients are respected partners at all levels of healthcare and health policy.