1. PAPIRIS STUDY Patient and Public Involvement in UK NHS Healthcare Services The Evidence Base
Carole Mockford1,2, Sophie Staniszewska1,2,
Frances Griffiths3 and Sandy Herron-Marx1,4
1. National Centre for Involvement; 2.Royal College of Nursing Research Institute; 3.Warwick Medical School; 4.University of Coventry
PAPIRIS - Patient and Public Involvement Review on the Impact on Services.

2. ADVISORY GROUP Pam Attree – University of Lancaster
Rosemary Barber – University of Sheffield
Peter Beresford – Brunel University, London
Jo Brett – University of Warwick
Sarah Buckland – INVOLVE
Jim Elliott – MacMillan Cancer Support
Frances Griffiths – Warwick Medical School
Tina Miller – Oxford Brookes University
Frank Palma – People Bank, NCI
Mark Petticrew – London School of Hygiene and Tropical Medicine
MaryRose Tarpey – INVOLVE
Joy Tweed – People Bank, NCI

3. Background Little known about:
The impact on services (Boote et al 2002; Oliver et al 2008)
How services have changed because of it (Sitzia et al 2004)
The extent of the changes (Harrison et al 2002)
How much it costs the NHS to involve service users (Crawford et al 2003)

4. Definition of PPI for the review
PPI is an active partnership between patients, the public and the NHS service providers. Active involvement may take the form of consultation, collaboration or user control. Many people define public involvement as working ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ the public. (Adapted from INVOLVE 2007)

5. Aim of the review
What impact has Patient and Public Involvement had on UK NHS healthcare services?

6. OBJECTIVES… a) How has PPI been defined, conceptualised, theorised?
b) How has the impact of PPI been captured or measured?
c) On what level do the changes, if any, take place e.g. staff, service user and community?
d) What has been the economic cost of different methods of involving service users?

7. PAPIRIS STUDY Collaboration User Led Consultation
Local Service Planning and Improvement
National Policy Development
Individual Treatment Decisions
Consultation 7

8. Selection of studies 17 online databases and websites included:
Medline, Cinahl, Embase, Health Management Information Consortium, British Nursing Index, Cochrane Library, Social Science Citation Index, PsycInfo, Conference Papers Index
King’s Fund, National Library for Health, Picker Institute, Opensigle, Theses, Invonet, SCIE, Joseph Rowntree Foundation

9. Criteria
Patient, carer or public involvement in some aspect of UK NHS health service planning and/or development
All study types
English language 9

10. Search terms
Set 1
Patient* User* Carer* Caregiver* Public Citizen* Client* Consumer* LayStakeholder* Representative* Relative* Famil* Survivor
Set 2
Health* NHS “National Health Service” Audit*
Set 3
Involv* Participa* Collaboration Engag* Evaluat* Consult*
Set 4
Empower* Experience* Reform* Develop* Economic* Cost*
Chang* Reconfig* Redesign* Impact* Outcome* Effect*
Decision making, Policy making, Health planning, Health priorities.

11. 23 papers not fulfilling study aims
Results of the review
6110 retrieved
78 papers
41 papers=28 studies
20 case studies
5 evaluations
3 others
14 Opensigle/theses
23 papers not fulfilling study aims

12. Literature review issues
Search terms – many and varied, used interchangeably, cover a wide range of activities
Quality assessment – mostly reports, descriptions or process
Availability of evidence – not the primary purpose of the study, lack of information on PPI in abstract, about sample, methods, analysis, impact
Methodological issues with the review studies

13. METHODS used Availability of evidence
28 studies (some used mixed methods)
postal surveys (cross sectional, non validated)
semi-structured face to face or telephone interviews
observations of meetings
documentary evidence
focus groups
descriptive studies

14. Results
There are a number of activities occurring and being reported such as in PCG/Ts or patient groups e.g. leaflet design or awareness campaigns.
Most of the review literature is focused on the process of PPI or mentions the inclusion of a service member
There is not a lack of PPI or impact but it’s not being reported in a way that can be captured in a review.
It is clear that PPI is multifaceted and consists of a range of concepts which need further development

16. Discussion
The current evidence base is weak at the methodological level.
PPI does not have a common definition
Is not generally underpinned by theory
Is not generally conceptualised
PPI impact is not being measured or captured in a robust way making any attempt to synthesis difficult
It is not being reported in a clear or methodical way

17. Conclusion How does PPI in literature move forward?
A set of criteria is needed to report PPI impact

18. Publications
Staniszewska S, Herron- Marx S and Mockford C (2008) Measuring the impact of patient and public involvement: The need for an evidence base. International Journal for Quality in Health Care. Int. J. Qual. Health Care, December 2008; 20:
Brett J, Staniszewska S, Mockford C, Seers K, Herron-Marx S and Bayliss H. (2010) A systematic review of the conceptualisation, measurement, impact and outcomes of patient and public involvement in health and social care research UKCRC report.
Mockford C, Staniszewska S, Griffiths F and Herron-Marx S (2011) PAPIRIS study: a systematic review of patient and public involvement in UK NHS healthcare services (under review International Journal for Quality in Health Care).
Brett J, Staniszewska S, Mockford C et al (2011) Impact of Patient and Public Involvement (PPI) on Health and Social Care Research: A systematic review of the evidence (under review Health Expectations).
Mockford C, Staniszewska S, Griffiths F and Herron-Marx S (2009) PAPIRIS study: a systematic review of Patient and Public Involvement (PPI) in NHS healthcare services. National Centre for Involvement report. (available shortly)