PAPIRIS STUDY A SYSTEMATIC REVIEW OF PATIENT AND PUBLIC INVOLVEMENT IN UK NHS HEALTHCARE SERVICES Mockford C1, Staniszewska S1, Griffiths F2 and Herron-Marx S3 Royal College of Nursing Research Institute, SHSS, University of Warwick1, Warwick Medical School, University of Warwick2 Coventry University3 ABSTRACT In the United Kingdom (UK) patient and public involvement (PPI) in health and social care policy is well established. Since 1997 there have been moves towards an open, accountable and patient centred service and an attempt to establish the involvement of service users in healthcare services (DH 1997). The Government is committed to empowering individuals and communities to play a greater role in shaping health and social care services (DH 2001, 2010). Referred to, variously as ‘patient and public involvement’, ‘user involvement’, ‘service user involvement’ or ‘lay involvement’ there have been a number of initiatives encouraging individuals and communities to have a stronger voice in the National Health Service (NHS) such as in planning and development, and there has been extensive activity within NHS Trusts. There is, surprisingly, a dearth of research about the impact of user involvement on services (Boote et al 2002, Oliver et al 2008), how services have changed (the outcomes) because of it (Sitzia et al 2004), the extent of changes (Harrison et al 2002), or how much it costs the NHS to involve service users (Crawford et al 2003). Definition: No common definition was found in the review literature. Theoretical underpinning and conceptualisation: There were very few theoretical underpinnings e.g. social constructionism (Peck et al 2002), self advocacy and collective self advocacy (Dearden-Phillips and Fountain 2005) . There is a reliance on current policy initiatives and the operationalisation of PPI has been diverse. Measurement: This was varied and did not allow for comparison of data. It included questionnaire surveys, semi-structured interviews, structured interviews, focus groups, documentary analysis and observations of meetings. Economic cost There were no meaningful economic analyses and costs were diverse. Examples of costs include:21% of Public Involvement Committees or working groups having a budget of £5000 or less (Alborz 2002), a learning disability project (Parliament style) costing £60,000pa to run with one project leader and 2 full time service users (Dearden-Phillips and Fountain 2005), a cancer partnership programme having an income of £15,000pa for each of its 34 networks (Sitzia et al 2004). RESULTS OF THE DATA SYNTHESIS AIM The aims of this study were to identify the impact of PPI on United Kingdom (UK) National Health Service (NHS) healthcare services and to identify the economic cost. It also examined how PPI is being defined, theorised, and conceptualised, and how the impact of PPI is captured or measured. METHODS Data sources Seventeen key online databases and websites were searched British Nursing Index, PsycInfo, Social Science Citation Index , Medline, EMBASE, CINAHL, HMIC, King’s Fund, National Library for Health, INVOLVE (Invonet), Social Care Institute for Excellence, Picker Institute, Cochrane library, Joseph Rowntree Foundation and Conference Papers Index., theses.com and Opensigle. Study selection UK studies from 1997- 2009 which included service user involvement in NHS healthcare services. Date extraction Key themes were identified and a narrative analysis was undertaken. This review indicates that PPI takes many forms within UK NHS healthcare. This ranges from lay membership of NHS managerial boards such as the former Primary Care Groups, Primary Care Trusts and commissioning boards, to patient involvement in condition-specific groups of individuals with a solitary aim e.g. information distribution as in leaflet design or awareness campaigns. This review found many and varied patient and public involvement activities in the UK NHS healthcare services but the studies did not provide robust evidence of its impact and almost no evidence of its cost. There was a lack of consistency of definition of public and patient involvement and no reliable measurement tool. New healthcare buildings and environment e.g. redesign of a new cancer centre (Anderson and Florin 2001a, Perkins et al 2004, Cotterell et al 2004) Producing public and patient information e.g. in mental health, cancer, stroke (Robert et al 2003, Cotterell et al 2004, Richardson et al 2005, Carney et al 2006, Stewart and Oliver in Coren 2007, Fudge et al 2008, Pickles et al 2008). Provision of, and re-organisation of, services (Milewa et al 2002, Murie and Douglas-Scott 2004, Berry 2008, Mountford and Anderson 2001, Peck et al 2002, Moore et al 2008, Crawford et al 2003) PPI IMPACT ON HEALTHCARE SERVICES Developing training sessions for service users, and health professionals (Richardson et al 2005, Fudge et al 2008) Raising awareness e.g. stroke, diabetes, testicular cancer (Anderson and Florin 2001c, Ripley et al 2007, Cotterell et al 2004, Fudge et al 2008) DISCUSSION The review indicates that patient and public involvement has a range of impacts on healthcare services. There is little evidence of any economic analysis of the costs involved. A key limitation of the patient and public involvement evidence-base is the poor quality of reporting impact. Few studies define PPI, there is little theoretical underpinning or conceptualisation reported, there is an absence of robust measurement of impact and descriptive evidence lacked detail. There is a need for significant development of the patient and public involvement evidence-base particularly around guidance for the reporting of user activity and impact. The evidence-base needs to be significantly strengthened to ensure the full impact of involving services users in NHS healthcare services is fully understood (Mockford et al 2011 under review, Staniszewska et al 2011 in press). 6110 retrieved 79 papers 42 papers=28 studies 20 case studies 5 evaluations 3 others 14 Opensigle/theses 23 papers not fulfilling study aims Results of the literature search Location and access e.g.relocation, transport and car parking to services (Milewa et al 2002, Murie and Douglas-Scott 2004, Richardson et al 2005, Challens 2006) Improved dialogue e.g.peer support group for stroke patients, local support group for carers (Cotterell et al 2004, Challens 2006, Murie and Douglas-Scott 2004, Mountford and Anderson 2001, Dearden-Phillips and Fountain 2005) (Fudge et al 2008, Murie and Douglas-Scott 2004) Theses and papers from Opensigle were not used in this synthesis Changes in acute trusts e.g. ward cleanliness, provision of minicom system (Crowley et al 2002, Murie and Douglas-Scott 2004, Berry 2008, Pickles et al 2008) *Patient and Public Involvement Review on Impact on Services. The PAPIRIS study was conducted at the National Centre for Involvement and funded by the Department of Health. Contact: carole.mockford@warwick.ac.uk or sophie.staniszewska@warwick.ac.uk References  Boote J, Telford R & Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy 2002; 61:213-236, Crawford MJ, Aldridge T, Bhui K, Rutter D, Manley C, Weaver T, Tyrer P, & Fulop N. User involvement in the planning and delivery of mental health services: a cross-sectional survey of service users and providers. Acta Psychiatr Scand 2003; 107:410-414, Department of Health (1997) The New NHS: modern, dependable DH: London, Department of Health (2009) NHS constitution. DH: London, Department of Health (2010) Equity and excellence. Liberating the NHS. DH: London. Harrison S, Dowsell G & Milewa T. Guest editorial: public and user ‘involvement’ in the UK National Health Service. Health and Social Care in the Community 2002;10 (2), 63–66, Mockford C, Staniszewska S, Griffiths F and Herron-Marx S (2011) The impact of Patient and Public Involvement on UK NHS Healthcare: a systematic review (under review with International Journal of Quality Healthcare), Oliver SR, Rees RW, Clarke-Jones L, Milne R, Oakley A, Gabbay J, Stein K, Buchanan P & Gyte G. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expectations 2008; 11: 72-84, Sitzia J, Cotterell P,& Richardson A. Formative Evaluation of the Cancer Partnership Project. London:Macmillan Cancer Relief, 2004, Staniszewska S, Brett J, Mockford C and Barber R (2011) The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. In press, International Journal of Technology Assessment in Healthcare. For study references:Mockford C, Staniszewska S, Griffiths F and Herron-Marx S (2009) PAPIRIS systematic review , National Centre for Involvement, University of Warwick.