Developing and evaluating guidelines for patient and public involvement (PPI) in research

International Journal of Health Care Quality Assurance

Volumn 28, Issue 2, 2015, Pages 141-155

  Pollard, Katherine ^a   Donskoy, Anne Laure ^a   Moule, Pamela ^a   Donald, Christine ^a   Lima, Michelle ^a   Rice, Cathy ^a  

^a UNIVERSITY OF THE WEST OF ENGLAND   (United Kingdom)

Author keywords

Evaluation; Guidelines; PPI in research

Indexed keywords

HEALTH SERVICES RESEARCH; HUMAN; INFORMATION DISSEMINATION; INTERPERSONAL COMMUNICATION; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PRACTICE GUIDELINE; PROCEDURES; STANDARDS; TIME;

COMMUNICATION; GUIDELINES AS TOPIC; HEALTH SERVICES RESEARCH; HUMANS; INFORMATION DISSEMINATION; PATIENT PARTICIPATION; TIME FACTORS;

EID: 84923338392     PISSN: 09526862     EISSN: None     Source Type: Journal    
DOI: 10.1108/IJHCQA-01-2014-0001     Document Type: Article

References (33)

1. Beresford, P. (2013), “Beyond the usual suspects”, available at: www.shapingourlives.org.uk/documents/BTUSReport.pdf (accessed 12 December 2013).
2. Boote, J., Telford, R. and Cooper, C. (2002), “Consumer involvement in health research: a review and research agenda”, Health Policy, Vol. 61 No. 2, pp. 213-236.
3. Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C. and Suleman, R. (2012), “Mapping the impact of patient and public involvement on health and social care research: a systematic review”, Health Expectations, Vol. 17 No. 5, pp. 637-650.
4. Brown, J. and Isaacs, D. (2012), The World Café: Shaping our Future Through Conversations that Matter, Berrett-Koehler, San Francisco, CA.
5. Cabinet Office (2011), “Building the big society”, available at: www.cabinetoffice.gov.uk/news/ building-big-society (accessed 5 June 2012).
6. DH (2007), “Exploring and evaluating roles for health service users in research implementation”, available at: www.dh.gov.uk (accessed 18 September 2012).
7. Donskoy, A.-L. and Pollard, K.C. (2014), “Interprofessional working with service users and carers”, in Thomas, J., Pollard, K.C. and Sellman, D. (Eds), Interprofessional Working in Health and Social Care, 2nd ed., Palgrave, Basingstoke.
8. Harding, E., Brown, D., Hayward, M. and Johnson Pettinari, C. (2010), “Service user perceptions of involvement in developing NICE mental health guidelines: a grounded theory study”, Journal of Mental Health, Vol. 19 No. 3, pp. 249-257.
9. Hounsell, J. and Owens, C. (2005), “User researchers in control”, Mental Health Today, May, pp. 29-32,available at: www.folkus.org.uk/files/users_in_control.pdf (accessed 6 January 2014).
10. House of Commons Health Committee (2007), Patient and Public Involvement in the NHS, The Stationery Office, London.
11. INVOLVE (2007), “Promoting public involvement in NHS, public health and social care research: strategic plan 2007-2012”, www.invo.org.uk (accessed 15 May 2011).
12. INVOLVE (2013a), “Payment for involvement”, www.invo.org.uk/payment-for-involvement (accessed 11 December 2013).
13. INVOLVE (2013b), “Briefing notes for researchers”, available at: www.invo.org.uk/resource-centre/resource-for-researchers (accessed 11 December 2013).
14. Kotecha, N., Fowler, C., Donskoy, A.-L., Johnson, P., Shaw, T. and Doherty, K. (2007), Guide To Setting Up and Running a User Focused Monitoring Project, Sainsbury Centre for Mental Health, London.
15. McKevitt, C., Fudge, N. and Wolfe, C. (2010), “What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke”, Health Expectations, Vol. 13 No. 1, pp. 86-94.
16. McLaughlin, H. (2013), “Alternative futures for service user involvement in research”, in Staddon, P. (Ed.) Mental Health Service Users in Research: Critical Sociological Perspectives, Policy Press, Bristol, pp. 153-169.
17. Moule, P., Pollard, K., Rice, C. and Lima, M. (2012a), “Evaluation of a patient and public involvement in research model”, Conference Presentation, Royal College of Nursing International Nursing Research Conference, 23-25 April, London.
18. Moule, P., Donald, C., Donskoy, A.-L., Pollard, K. and Rice, C. (2011b), “Public participation in research: guidelines for good practice”, International Royal College of Nursing Annual Research Conference, 16-18 May, Harrogate.
19. Moule, P., Lima, M., Hadfield, J., Young, P., Albarran, J. and Rice, C. (2012b), “Evaluating a leadership programme: impact and future directions”, Fourth International Nurse Education Conference, 17-20 June, Baltimore, MD.
20. Moule, P., Young, P., Albarran, J., Oliver, B., Curran, T., Hopkinson, C., Pollard, K., Hadfield, J., Lima, M. and Rice, C. (2011a), Leadership Course Evaluation with Patient and Public Involvement, UWE, Bristol.
21. National Institute for Health Research (NIHR) (2012), “Patients and public”, available at: www. crncc.nihr.ac.uk/ppi (accessed 14 November 2012).
22. Oktay, J.S. (2012), Grounded Theory, Oxford University Press, Oxford.
23. Owens, C, Farrand, P., Darvill, R., Emmens, T., Hewis, E. and Aitken, P. (2011), “Involving service users in intervention design: a participatory approach to developing text messaging intervention to reduce repetition of self-harm”, Health Expectations, Vol. 14 No. 3, pp. 285-295.
24. Pollard, K.C. and Evans, D. (2013), “Theorising service user involvement from a researcher perspective”, in Staddon, P. (Ed.) Mental Health Service Users in Research, Policy Press, Bristol, pp. 39-51.
25. Pollard, K, Moule, P., Evans, D., Donald, C, Donskoy, A.-L. and Rice, C. (2010) User Engagement in the Co-Production of Knowledge for Knowledge Exchange in Health and Social Care, UWE, Bristol.
26. Social Care Institute for Excellence (2008), “Putting people first: ‘a shared vision and commitment to the transformation of adult social care'", available at: http://search.scie.org.uk/?q = public %20involvement (accessed 12 December 2013).
27. Shekelle, P.G., Woolf, S.H., Eccles, M. and Grimshaw, J. (1999), “Developing guidelines”, British Medical Journal, Vol. 318 No. 7183, pp. 593-596.
28. Shippee, N.D., Domecq Garces, J.P., Prutsky Lopez, G.J., Wang, Z., Elraiyah, T.A., Nabhan, M., Brito, J.P., Boehmer, K, Hasan, R., Firwana, B, Erwin, P.J., Montori, VM. and Murad, M.H. (2013), “Patient and service user engagement in research: a systematic review and synthesized framework”, Health Expectations, doi:10.1111/hex.12090, available at: http://onlinelibrar. wiley.com/doi/10.1111/hex.12090/abstract?deniedAccessCustomisedMessage=&userIs Authenticated=false (accessed 6 January 2014).
29. Staley, K. (2009), Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research, INVOLVE, Eastleigh.
30. Staley, K., Kabir, T. and Szmukler, G. (2013), “Service users as collaborators in mental health research: less stick, more carrot”, Psychological Medicine, Vol. 43 No. 6, pp. 1121-1125.
31. Thunberg, O. (2011), “World cafes and dialog seminars as processes for reflective learning in organisations”, Reflective Practice: International and Multidisciplinary Perspectives, Vol. 12 No. 3, pp. 320-333.
32. UWE (2011), “Public involvement in research: guidelines for good practice”, available at: http://hls.uwe.ac.uk/suci/Default.aspx?pageid = 9 (accessed 14 October 2014).
33. Ward, P.R., Thompson, J., Barber, R., Armitage, C.J., Boote, J.D., Cooper, C.L. and Jones, G.L. (2010), “Critical perspectives on ‘consumer involvement’ in health research: epistemological dissonance and the know-do gap”, Journal of Sociology, Vol. 46 No. 1, pp. 63-82.