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

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. CLAHRC West Midlands
Patients and
the public
Health & social
care staff
Applied health
researchers
The Collaboration

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. 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. 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. 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. 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. 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. CLAHRC West Midlands
PPI Governance & Structures

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. 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. 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.