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Meaningful Patient Involvement

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* * An introduction to European Patients Forum The rationale behind and added value of involving patients meaningfully in health related research The outcomes of ... – PowerPoint PPT presentation

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Title: Meaningful Patient Involvement


1
Meaningful Patient Involvement In FP7 Research
Nicola Bedlington
Open Information Day 8 June 2010
2
The presentation
  • 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

3
European Patients Forum
  • 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

4
Literature Patient Involvement
  • 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
5
  • Evidence from the project on Value on FP6 and
    FP7
  • 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

6
Know-how in Patient Involvement
  • 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
7
Strengths of Patient Involvement
  • 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

8
Value Outcomes
  • 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

9
Value Handbook
  • 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

10
Putting the Tools into Practice
  •  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

11
Conclusions
  • 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.

12
More Information?
  • www.eu-patient.eu
  • info_at_eu-patient.eu
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