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PAPIRIS STUDY Patient and Public Involvement in UK NHS Healthcare Services

PAPIRIS STUDY Patient and Public Involvement in UK NHS Healthcare Services. A systematic review Carole Mockford 1,2 , Sophie Staniszewska 1,2 , Frances Griffiths 3 and Sandy Herron-Marx 1,4

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PAPIRIS STUDY Patient and Public Involvement in UK NHS Healthcare Services

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  1. PAPIRIS STUDYPatient and Public Involvement in UK NHS Healthcare Services A systematic review 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

  2. Background • Background to the study 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)

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

  4. Aims of the review • What impact has Patient and Public Involvement had on UK NHS healthcare services? • Additionally, • 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?

  5. Methods 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 MaryRoseTarpey – INVOLVE Joy Tweed – People Bank, NCI

  6. Selection of studies 17 online database 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

  7. Criteria • Patient, carer or public involvement in some aspect of UK NHS health service planning and/or development • All study types • English language • 1997-2009

  8. 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.

  9. Results of the review

  10. Results – How has PPI been defined? • No common definition was found in the review literature • Putting it all together we found it is about: • Local community (Crowley et al 2002, Alborz 2002, South 2004, Anderson and Florin 2001a, b) • Building relationships and partnerships (Dearden-Phillips and Fountain 2005) • Direct, sustainable, involvement at all levels (Dearden-Phillips and Fountain 2005, Ripley et al 2007, Robert et al 2003, Peck et al 2002) • Openness (Anderson and Florin 2001a) • Acceptance and support (Dearden-Phillips and Fountain 2005)

  11. Results – How has PPI been conceptualised and theorised? • Most studies were driven by current policy initiatives • Operationalisation of PPI has been diverse: with varied responsibilities for the service users and different levels of influence emerging from them. • 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)

  12. Results – how has the impact of PPI been measured or captured? • Questionnaire surveys • Semi-structured interviews • Structured interviews • Focus groups • Documentary analysis • Observations of meetings

  13. Results – what impact has PPI had on UK NHS healthcare services? • New healthcare buildings and environment (Anderson and Florin 2001a, Perkins et al 2004, Cotterell et al 2004) • Location and access to services (Milewa et al 2002, Murie and Douglas-Scott 2004, Richardson et al 2005, Challens 2006) • Provision of additional services (Milewa et al 2002, Murie and Douglas-Scott 2004) • Re-organisation of existing services (Berry 2008, Mountford and Anderson 2001, Peck et al 2002, Moore et al 2008, Crawford et al 2003) • Changes in acute trusts (Crowley et al 2002, Murie and Douglas-Scott 2004, Berry 2008, Pickles et al 2008) • Improved dialogue between health professionals and patients (Cotterell et al 2004, Challens 2006, Murie and Douglas-Scott 2004, Mountford and Anderson 2001, Dearden-Phillips and Fountain 2005) • Improved dialogue between patients and other patients (Fudge et al 2008, Murie and Douglas-Scott 2004)

  14. Information development and distribution • Producing public and patient information (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) • Raising awareness (Anderson and Florin 2001c, Ripley et al 2007, Cotterell et al 2004, Fudge et al 2008) • Developing training sessions for service users, and health professionals (Richardson et al 2005, Fudge et al 2008)

  15. PPI impact on NHS staff members • Professional attitudes • Positive Changes (Anderson and Florin 2001, Lewis and Hinton 2005, Challens 2008) • Difficult encounters (Peck et al 2002, Mountford and Anderson 2001, South 2004) • Improved awareness of user perspectives (Anderson and Florin 2001, Crowley et al 2002) • Improved relationships with voluntary organisations (South 2004)

  16. PPI impact on service users • Personal gains: • Sense of worth and being valued (Ripley et al 2007) • Making social contacts and friendship (Ripley et al 2007, Fudge et al 2008) • Forming strong emotional bonds to the group (Sitzia et al 2004) • Being pleased to know they had been listened to, ideas were acted on and it also increased their own knowledge and understanding of their condition (Fudge et al 2008) • Personally rewarding (Cotterell et al 2004, Fudge et al 2008, Richardson et al 2005, Ripley et al 2007) • Developing skills: • Presentation skills and representation (Dearden-Phillips and Fountain 2005) • Developed an understanding of change in the NHS and how they could influence it (Taylor et al 2004, Richardson et al 2005)

  17. PPI impact on the community • Increased knowledge (Anderson and Florin 2001c, d) • Improved dialogue (Anderson and Florin 2001c, d, South 2004) • Improved awareness of others (Pickard et al 2001, Crowley et al 2002) • Lack of representation (Alborz 2002, Crawford et al 2003) • Low awareness of Trusts and Boards (Alborz 2002) • Reliance on existing groups (Pickard and Smith 2001, Anderson and Florin 2001c) • Lack of evidence of community influence (South 2004, Pickard and Smith 2001)

  18. Results – economic cost • No meaningful economic analyses • Examples of costs include: • 21% of Public Involvement Committees or working groups had a budget of £5000 or less (Alborz 2002). • A learning disability project (Parliament style) cost £60,000pa to run with one project leader and 2 full time service users (Dearden-Phillips and Fountain 2005). • A cancer partnership programme had an income of £15,000pa for each of its 34 networks (Sitzia et al 2004).

  19. Discussion of the review methods • Availability of evidence • Search terms • Quality assessment • Methodological issues with the review studies

  20. Discussion • The current evidence base is weak at both the methodological level and at practice level. • PPI does not have a common definition but there appears to be an understanding of what it is. • There is very little theory underpinning PPI in the review studies • PPI impact is not being measured or captured in a robust way • We do not have any clear ideas of the cost of PPI or what it is saving the NHS • There is less evidence that PPI is having an impact on ‘bigger’ decision making.

  21. Conclusion To move forward do we need to consider?: • A common definition for PPI • A valid and reliable way of measuring change • A firm theoretical underpinning • An economic analysis • A set of guidelines or recommendations to report PPI impact

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