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Meaningful Patient Involvement In FP7 Research Nicola Bedlington Meaningful Patient Involvement In FP7 Research Nicola Bedlington Open Information Day.

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Presentation on theme: "Meaningful Patient Involvement In FP7 Research Nicola Bedlington Meaningful Patient Involvement In FP7 Research Nicola Bedlington Open Information Day."— Presentation transcript:

1 Meaningful Patient Involvement In FP7 Research Nicola Bedlington Meaningful Patient Involvement In FP7 Research Nicola Bedlington Open Information Day 8 June 2010 Open Information Day 8 June 2010

2  An introduction to European Patients’ Forum  The rationale behind and added value of involving patients meaningfully in health related research  The outcomes of the Value+ project on meaningful patients’ involvement in EU health related projects and policies, led by the European Patients’ Forum  Partnering with patient organisations – how EPF can help  Conclusions The presentation

3  Strong and united voice  Umbrella body of 45 European disease specific patients’ organisations and national coalitions  150 million EU patients with chronic conditions  Vision: high quality, patient-centred equitable healthcare across the EU European Patients’ Forum

4  Considerable benefits of patient involvement  Need for increased policy attention and investment  ‘“Research with” rather than ‘research on’ patients an imperative – patients – ultimate beneficiaries Source : ‘What research means to patients, and the importance of partnership with practitioners in research’ Hazel Thornton - Department of Health Sciences, University of Leicester, Leicester, UK Literature – Patient Involvement

5  patient involvement weaker in research projects than in other projects, especially those focused on clinical trials, studies or development of technologies and devices  Limited patient involvement at the inception and planning stage, in the governance structures of project Evidence from the project on Value+ on FP6 and FP7

6  Project coordinators - clear interest in developing patient involvement  Challenge - how to translate this in practice  Counter attitude -patients’ organisations not credible and equal partner  Education of patients and the public about research concepts is essential ‘The Value and Challenges of Participatory Research: Strengthening Its Practice’, Margaret Cargo and Shawna L. Mercer Know-how in Patient Involvement

7  When patients engaged from the onset - more committed to applying research in real life settings  Key strength -integration of researchers’ theory expertise with patients’ real-world knowledge and experiences.Balance scientific excellence with social and cultural relevance  Patients’ organisations – key role in translating outcomes into policy environment, and dissemination of results in an accessible and inclusive way Strengths of Patient Involvement

8 Series of tools:  to enable patients to become more involved in EU funded projects including research projects  for project promoters and coordinator to acquire more skills to enable them to facilitate in practice  a series of policy recommendations look at linking research project outcomes with patient – centred policy development  Comprehensive Directory of Patient Organisations in every EU member state Value+ Outcomes

9 Why  Two-fold purpose: raising awareness and providing know-how What  Value+ Model of Meaningful Patient Involvement  Involvement at each project stage  Knowing and understanding patients and patient organisations to work effectively together Value+ Handbook

10 Real commitment to involving patients + Partnership with EPF / Value + tools = Greater awareness among patients to get involved Great receptiveness and know-how among project promoters and innovators Access to credible patient organisations ready to contribute their unique expertise and know-how meaningfully Putting the Tools into Practice

11 Advances to patient involvement in research practice over the next decade :  Establishing the effectiveness of patient research, involvement in achieving health outcomes  Patients – equal and respected research partners  Increasing Patient Research education and training opportunities  Achieving greater support for Patient Research approaches among funders and institutions. Conclusions

12 More Information?


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