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Patient and Public Involvement
and Engagement (PPIE) in
research
Magdalena Skrybant, PPI Advisor
Nathalie Maillard, Head o...
CLAHRC West Midlands
Patients and
the public
Health & social
care staff
Applied health
researchers
The Collaboration
CLAHRC West Midlands
Impact of PPI on research
“No matter how complicated the research, or
how brilliant the researcher, p...
CLAHRC West Midlands
PPIE in CLAHRC
Active Partnership: “Doing research ‘with’ or ‘by’ the
public, rather than ‘to’, about...
CLAHRC West Midlands
PPIE in implementation
• Formulating research ideas – are the right questions being asked?
• Supporti...
CLAHRC West Midlands
PPIE implementation
“Service user involvement in research means more than asking
people to share thei...
CLAHRC West Midlands
My PPIE experience
• From a research background (Polish history) : wanted to ‘give
something back’
• ...
CLAHRC West Midlands
Exploring Impact (Staley 2009)
In a structured literature review of 89 papers PPI reported to:
• Help...
CLAHRC West Midlands
PPI Governance & Structures
CLAHRC West Midlands
PPI Internships
Consultation with PPI Supervisory Committee
A 3-pronged approach agreed:
1) Organise ...
CLAHRC West Midlands
PPI Training
• NIHR Trainee PPI working group
– developed a training module for healthcare profession...
CLAHRC West Midlands
Further Information
Website: www.clahrc-wm.nihr.ac.uk
Twitter: @CLAHRC_WM
Sign up to our News Blog: h...
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Magdalena Skrybant and Nathalie Maillard - Patient and Public Involvement and Engagement (PPIE) in research

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Magdalena Skrybant and Nathalie Maillard - Patient and Public Involvement and Engagement (PPIE) in research

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Magdalena Skrybant and Nathalie Maillard - Patient and Public Involvement and Engagement (PPIE) in research

  1. 1. Patient and Public Involvement and Engagement (PPIE) in research Magdalena Skrybant, PPI Advisor Nathalie Maillard, Head of Programme Delivery (Operations) 02/12/2015 CLAHRC West Midlands
  2. 2. CLAHRC West Midlands Patients and the public Health & social care staff Applied health researchers The Collaboration
  3. 3. CLAHRC West Midlands Impact of PPI on research “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost-effective.” Professor Dame Sally C. Davies Chief Medical Officer, Department of Health
  4. 4. CLAHRC West Midlands PPIE in CLAHRC Active Partnership: “Doing research ‘with’ or ‘by’ the public, rather than ‘to’, about’ or ‘for’ the public”. INVOLVE, http://www.invo.org.uk/about_us.asp • PPIE advisors in each theme • PPIE advisors at each level in CLAHRC WM model • Selection process • Advisors from different backgrounds • Advisors with wealth of skills/knowledge/experience
  5. 5. CLAHRC West Midlands PPIE in implementation • Formulating research ideas – are the right questions being asked? • Supporting research bids/grants – PPI often a requirement • Reviewing/designing research – e.g. Designing questionnaires • Reviewing patient/public facing research literature • Contributing patient experience: what are the challenges/what works well • Data collection – patients/public as researchers • Aware of networks that are useful with recruitment to studies • Helping disseminate research results. What is best way to communicate the messages? • Evaluating PPI engagement – how can we do it better next time?
  6. 6. CLAHRC West Midlands PPIE implementation “Service user involvement in research means more than asking people to share their views on a particular topic or issue. Service users can also be involved in planning or making decisions about the research itself, in undertaking research and in evaluating research. Involving service users as active partners in these processes is thought to achieve better quality research, which might lead to better quality health services.” NHS Service Delivery and Organisation R&D Programme. Department of Health, October 2006.
  7. 7. CLAHRC West Midlands My PPIE experience • From a research background (Polish history) : wanted to ‘give something back’ • Have several long-term, chronic conditions: wanted to ‘give something back’ • Became involved in CLAHRC BBC • Invited to be co-applicant on CLAHRC WM bid. Attended interview after shortlisting. oCommenting on bids – are researchers asking the right questions? oCommenting on research design oCommenting on draft reports oSystematic Reviews oDisseminating findings oInterview panels
  8. 8. CLAHRC West Midlands Exploring Impact (Staley 2009) In a structured literature review of 89 papers PPI reported to: • Help increase recruitment to all types of research • Particular value in qualitative research where participants asked to share experiences • Particular value for clinical trials, helped improve trial design and ensure use of relevant outcome measures • Frequently reported to benefit people involved
  9. 9. CLAHRC West Midlands PPI Governance & Structures
  10. 10. CLAHRC West Midlands PPI Internships Consultation with PPI Supervisory Committee A 3-pronged approach agreed: 1) Organise 1-2 days during any given month where PhD student with shadow someone in health and social care organisations who has a role in PPI 2) Link to a PPI Advisor as ‘buddy’ – PPI Advisor to provide their own insight on their role and challenges they face as PPI Advisor 3) PPI advice on PhD work can be brought to the PPI Supervisory Committee as required – PhD student would receive feedback from PPI Advisors on a specific part of their project
  11. 11. CLAHRC West Midlands PPI Training • NIHR Trainee PPI working group – developed a training module for healthcare professionals and researchers – provides evidence of the impact of PPI on research activities – we need your help to pilot the tool
  12. 12. CLAHRC West Midlands Further Information Website: www.clahrc-wm.nihr.ac.uk Twitter: @CLAHRC_WM Sign up to our News Blog: http://eepurl.com/OMOEP Email: n.maillard@warwick.ac.uk This work was funded by the National Institute of Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West Midlands (CLAHRC WM). The views expressed are those of the author(s) and not necessarily those of the NHS, NIHR, or Department of Health.

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