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Meaningful Patient Involvement


* * 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

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

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

Literature Patient Involvement
  • Considerable benefits of patient involvement
  • Need for increased policy attention and
  • Research with rather than research on
    patients an imperative patients ultimate

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
  • Evidence from the project on Value on FP6 and
  • 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

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
Strengths of Patient Involvement
  • When patients engaged from the onset - more
    committed to applying research in real life
  • 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

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

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

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

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