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Patient And Public Involvement (PPI) in Research
Dr. Steven BlackburnNIHR Research Design Service West Midlands (Keele University Hub)
........lots of terms used, some having the same meaning, some are very different......
Lay
involvementUser involvement
PPI
Public and patient
involvement
Participatory research
Patient
collaboration
Consumer
involvement
Co-production
Public participationPatient co-
research
Engagement
What do we mean by PPI?
Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
INVOLVE: http://www.invo.org.uk/
Involvement, Participation, & Engagement
Engagement
Participation
Involvement
Why do Patient and Public Involvement (PPI)?
“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 efficient as well”.
Professor Dame Sally C. Davies, FRS, Chief Medical Officer and Chief Scientific Adviser, Department of Health, 2009.
What PPI adds to research?
Democratic
Improve quality
Improve relevancy
Improve acceptability
Accountability
Requirement of NIHR funders:
Design phase (‘pre-protocol’)
During the study
Dissemination
PPI throughout the research cyclePrioritising research
Research design
Advisory /
Management
Data collection and analysis
Dissemination and
implementation
ConsultationCollaborationCo-production
Examples of PPI from Keele (1)• 5 year research programme in
osteoarthritis:• Shaped the research grant & lay co-applicant• the development• Influenced the interventions• Developed a patient guidebook about living
with OA• Developed study questionnaires• Training videos for GPs• Presented at conferences• Co-authored a journal article
(ARUK Primary Care Centre, 2006-12)
Examples of PPI from Keele (2)• Smartphone App for the
daily assessment of pain:• Advisory group of 8• Help design content• Provided feedback on
prototype• Navigation, & layout• Input method
(ARUK Primary Care Centre, 2014)
PPI in research design• Shape the study design• Clarify the research question and relevancy• Appropriate methods (incl. intervention)• Recruitment strategy• Appropriate outcomes and data collection• Lay summary• On-going PPI• Co-applicants
NIHR grant applications
• Demonstrate active PPI:• During the design of the research• Development of the grant application• Active involvement in the proposed research:
• Benefits to the research• Reasons for PPI• Training and support for PPI
JustifiedRealistic
Achievable
What do reviewers look for?• Clear plain English summary • Specific examples of how things have changed as a result of PPI.• Clear PPI plan going forward, including purpose of PPI and justification of
approach.• Appropriate budget.• Team expertise • Awareness of challenges and possible solutions.• PPI activities consistent with other parts of the form.• The type and appropriateness of the people providing the PPI input.• Burden – e.g. is one person being asked to do everything? • Training / preparation / support.• How do the researchers demonstrate that the PPI input will be listened to and
taken seriously?
PPI Good Practice
• Do it early• Manage expectations• Gratitude, dignity and respect• Listen and act: “You said, we did”• Training and support• Feedback
Planning your PPIThere are lots of different PPI models. Your topic area and research question will impact your approach. As with any aspect of your study, it’s important to justify your chosen approach.
Ask yourself: • Which aspects of this study would most benefit from the a public perspective?• Who is best placed to provide that perspective? (E.g. patients, carers, advocates etc.)• What are practicalities of engaging with that group? (E.g. methods of communication,
format of activities, timing / location of meetings etc.)• Do I have the skills to engage with that group? If not, who can help me? • What costs are associated with my planned PPI activities? (There is an online cost
calculator to help with this). • What is in it for them?!
How to find people
Generally falls into 4 categories:1. Clinical contacts2. Existing local / national PPI groups and networks3. Topic specific charities / support groups etc. 4. Advertising opportunities to the general public e.g. online, posters, newspapers, radio etc.
NIHR and other resources• RDS – advice, online resources and links to regional
RDS, including Public Involvement Funds http://www.rds.nihr.ac.uk/patient-and-public-involvement/
• People in Research – Advertise involvement opportunities http://www.peopleinresearch.org/
• Topic Specific NIHR PPI networks - http://www.crncc.nihr.ac.uk/ppi/contact_us
• Local PPI networks / groups – Search at invoDIRECT http://www.invo.org.uk/find-out-more/invodirect/ or http://www.patient.co.uk/
http://www.rds.nihr.ac.uk/wp-content/uploads/RDS-PPI-Handbook-2014-v8-FINAL.pdf
Resources and contacts• INVOLVE
http://www.invo.org.uk/
• Key INVOLVE publications - • Budgeting for PPI:
http://www.invo.org.uk/posttypepublication/budgeting-for-involvement/
• Payments and expenses:http://www.invo.org.uk/posttypepublication/payment-for-involvement/
• Briefing notes for researchers (general PPI background and advice):
http://www.invo.org.uk/posttypepublication/involve-briefing-notes-for-researchers/
RDS Public Involvement Fund
• The RDS offers financial support for PPI at the grant application development stage.
• Simple application form• Up to £500 per project• Swift decision
• http://www.rds-wm.nihr.ac.uk
Public Involvement Fund: Things to Consider
• Reasons for PPI• Demonstrate good practice• How you identify and invite patients• Activities and tasks• Impact of PPI• Well costed
Public Involvement Fund ProcessRegister with RDS
Apply earlyhttp://www.rds-wm.nihr.ac.uk
Decision within 10 days
Evaluation report at 3 months
ANY QUESTIONS?
