1. Making Patient Public Involvement (PPI) Meaningful for Researchers
Helen Ward - Director
Jill Lloyd – Lay Representative
Bethan Davies – Deputy Director
Maria Piggin – Patient and Public Involvement Officer
NIHR Biomedical Research Centre
Patient Experience Research Centre (PERC)

4. NIHR BRC PERC Qualitative research methods
PPI for research funding applications and projects
Policies for public and patient involvement including payment, confidentiality etc.
Involving patients and staff in co-design projects
Focus groups
Analysis of patient surveys and comments
Patient Experience Research Centre St Marys Campus Norfolk Place London, W2 1PG
Enquiries +44 (0)  
Enquiries about PPI in research

5. Public Engagement (PE)
Definitions (NIHR)*
Patient & Public Involvement (PPI)
Public Engagement (PE)
Patients and the public being actively involved in the activities, organisation and governance of specific research projects or research in general.
Providing and disseminating information and knowledge about research to the public; discussing, consulting the public.
Not to be confused with Participation in Research (as subjects/research participants)
* INVOLVE (2014) What is public involvement in research?

6. Reciprocity and Co-Design
Patients/citizens as meaningful partners rather than merely ‘end users’
Patients/citizens as experts of their ‘lived experience’
Evidence tells us informed, activated patients effective in facilitating good health outcomes - Batalden and others, 2015
Viewing healthcare as a product not a service prevents co-production relationship – Batalden and others, 2015

7. “Professionals need to come off their pedestals, but patients also need to get up from their knees”
Robert Johnson, Board Member, International Alliance of Patients’ Organisations

8. Ladder of participation - Sherry R Arnstein

9. Ladder of Co-production

10. Why do PPI?
Different perceptions: patients/public vs health professionals
Learning from and with patients
Improve the quality/design of the research
Identify the subtle nuances researchers may miss
Keeps it real - makes research more relevant
Intrinsic part of citizenship, public accountability and transparency
Funding bodies and research ethics committees require PPI plans
People affected by research have right to have a say in what and how research is undertaken

11. Different Perspectives on Involvement
Consumerist approach – Choices and preferences. Way of improving quality.
Democratic approach – Political, social and economic rights. A voice in how a public service is run and received.
Ethical and outcomes-based approach – Right thing to do based on good evidence-based medicine. Judgement of relative risk.
Values-based approach – Establish value for money. Care needed and wanted (no less and no more.)
Sustainability approach – Help people to stay well and manage their own health, less drain on services.
Person-centred approach – Focused on users to promote independence. Responsive to individual needs and values. ‘What’s the matter with you?’ becomes ‘What matters to you?’
The King’s Fund (2014)

12. PPI in Research The research cycle
(INVOLVE Briefing note eight: Ways that people can be involved in the research cycle)

13. Your experiences of PPI
How have you involved lay contributors in your research?

15. PPI in your future research
How could you involve lay contributors in your research in the future?

16. Common Challenges Getting the right people Understanding skills/needs
Managing expectations
Embracing differences/diversity
Involving people early – James Lind Alliance (identifying and prioritising)
Measuring impact
Ethics approval?
Funding
Research Design Service’s Enabling Involvement Fund

17. Things to think about
Being clear about purpose of involving lay contributors
Plain English
Transparency and accountability
Who might you involve?
What method of involvement are you going to use?
Measuring impact
Rewarding contribution & payment of expenses

18. Examples - NIHR Imperial BRC Achievements (PPI)
How
What
Impact
Cancer
12 patients on generic panel
Clear role descriptors
Meet 4 times per year plus ad hoc/ virtual
Support new research projects
Review participant material, discuss findings and outputs
Patient-initiated art projects
Advice on recruitment strategies for tissue sampling: 7-fold increase in sample numbers
Development of ‘for your convenience cards’ to help people navigate facilities when out in London.
Videos on clinical trials and research
Input into out-patient clinic re-design
Media and artistic publicity
‘People who are keeping me alive’ exhibition
Diabetes glucose monitor project
Advisory group of 8 patients
Meet regularly with PIs and research staff
Early involvement
Protocol design
Participant information sheets
Consent forms
Amended protocol, lay language PIS
More patient-centred research process
Involved in bids for further funding
Revised questionnaires to be appropriate for patient needs

19. “My Medication Passport”
Aims to help patients/carers have complete record of medicines & understand reasons for any changes
Idea generated by patients in 2010
Designed to:
empower patients/carers to take control of their medication
help seamless transfer of medication information across healthcare interfaces
Tested with 7,000 inpatients and outpatients in 2012
Modified version launched in April 2013
Used by many groups including learning disabilities
Research projects ongoing to explore how used and impact on patients/ carers, healthcare professionals & wider community

20. Further Support & Other Resources
Helen Ward
Bethan Davies
Maria Piggin

21. Questions?