Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: A modified Delphi study

BMJ Open

Volumn 4, Issue 1, 2014, Pages

  Snape, D ^a   Kirkham, J ^a   Preston, J ^a   Popay, J ^b   Britten, N ^c   Collins, M ^b   Froggatt, K ^b   Gibson, A ^c   Lobban, F ^b   Wyatt, K ^c   Jacoby, A ^a  

^a UNIVERSITY OF LIVERPOOL   (United Kingdom)

^b LANCASTER UNIVERSITY   (United Kingdom)

^c UNIVERSITY OF EXETER MEDICAL SCHOOL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONFLICT OF INTEREST; CONSENSUS; DELPHI STUDY; FUNDING; HEALTH CARE; HUMAN; MANAGER; MEDICAL RESEARCH; PUBLIC HEALTH; PUBLIC-PRIVATE PARTNERSHIP; SOCIAL CARE; UNITED KINGDOM; CONSUMER; HEALTH SERVICES RESEARCH; PARTICIPATORY RESEARCH; PRACTICE GUIDELINE; PROCEDURES; SOCIAL PSYCHOLOGY; STANDARDS;

COMMUNITY-BASED PARTICIPATORY RESEARCH; CONSENSUS; CONSUMER PARTICIPATION; DELPHI TECHNIQUE; GREAT BRITAIN; GUIDELINES AS TOPIC; HEALTH SERVICES RESEARCH; HUMANS; SOCIAL VALUES;

EID: 84892864007     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2013-004217     Document Type: Article

References (58)

1. Patient-Centred Outcomes Research Institute (PCORI). Patient-Centred Outcomes Research, University of Pittsburgh. http://www.pcori.org/research-we- support/pcor (accessed 26 Nov 2013).
2. University of Western Australia. Consumer and Community Participation Policy. http://www.sph.uwa.edu.au/ (accessed 26 Nov 13).
3. McKenzie A, Hanley B. Consumer and Community Participation in Health and Medical Research. A practical guide for health and medical research organisations. Australia: University of Western Australia and Telethon Institute for Child Health Research, 2009.
4. Department of Health. Research Governance Framework for Health and Social Care. 2nd edn. London: Department of Health, 2005.
5. National Institute for Health Research (NIHR). Patients and Public. http://www.crncc.nihr.ac.uk/PI (accessed 18 Jun 2012).
6. Beresford P. User Involvement in research and evaluation: liberation or regulation? Soc Policy Soc 2002;1:95-105.
7. Beresford P. User Involvement in research: exploring the challenges. Nurs Times Res 2003;8:36-46.
8. Popay J, Attree P, Hornby D, et al. Community engagement to address the wider social determinants of health: a review of evidence on impact, experience and process. London: NICE, 2007. http://www.nice.org.uk/guidance/index.jsp? action=folder&o=34709 (accessed on 18 Jun 2012).
9. Wyatt K, Carter M, Mahtani V, et al. The impact of consumer involvement in research: an evaluation of consumer involvement in the London Primary Care Studies Programme. Fam Pract 2008;25:154-61. (Pubitemid 351965933)
10. Caron-Flinterman JF, Broerse JEW, Teerling J, et al. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect 2005;8:253-63. (Pubitemid 41153095)
11. Wright DNM, Corner JL, Hopkinson JB, et al. The case for user involvement in research: the research priorities of cancer patients. Breast Cancer Res 2007;9(Suppl 2):S3.
12. Marsden J, Bradburn J. Patient and clinician collaboration in the design of a national randomised breast cancer trial. Health Expect 2004;7:6-17. (Pubitemid 38220404)
13. Hewlett S, de Wit M, Richards P, et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheum 2006;55;676-80. (Pubitemid 44289891)
14. Minogue V, Boness J, Brown A, et al. The impact of service user involvement in research. Int J Health Care Qual Assur 2005; 18:103-12. (Pubitemid 40754967)
15. Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy 2002;61:213-36. (Pubitemid 34669916)
16. Staley K. Exploring impact: PI in NHS, public health and social care research. Eastleigh: INVOLVE, 2009.
17. Barber R, Boote JD, Parry GD, et al. Can the impact of PI on research be evaluated? A mixed methods study. Health Expect 2011;15:229-41. Snape D, Kirkham J, Preston J, et al. BMJ Open 2014;4:e004217. doi:10.1136/bmjopen-2013-004217 9 Open Access Downloaded from bmjopen.bmj.com on January 21, 2014-Published by group.bmj.com
18. Staniszewska S, Brett J, Mockford C, et al. The GRIPP checklist: strengthening the quality of patient and PI reporting in research. Int J Technol Assess Health Care 2011;27:391-9.
19. Entwistle VA, Renfrew MJ, Yearley S, et al. Lay perspectives: advantages for health researchers. BMJ 1998;316:463-6. (Pubitemid 28121309)
20. Oliver S, Milne R, Bradburn J, et al. Investigating consumer perspectives on evaluating health technologies. Evaluation 2001;7:468.
21. Oliver SR, Rees RW, Clarke-Jones L, et al. A multidimensional conceptual framework for analysing public involvement in health services research. Health Expect 2008;11:72-84. (Pubitemid 351239422)
22. Gradinger F, Britten N, Wyatt K, et al. Values associated with public involvement in health and social care research. Health Expect 2013; in press. doi:10.1111/hex.12158
23. INVOLVE. INVOLVE Strategy, 2012-2015. Putting people first in research. Eastleigh: INVOLVE, 2012. http://www.invo.org.uk (accessed 18 Jun 2012).
24. Duffield C. The Delphi technique: a comparison of results obtained using two expert panels. Int J Nurs Stud 1993;30:227-37.
25. Hatton JM, Nunnelee JD. Research priorities of vascular nursing. J Vasc Nurs 1995;13:1-7.
26. Dalkey N, Helmer O. Delphi technique: characteristics and sequence model to the use of experts. Manag Sci 1963;9:458-67.
27. Gallagher M, Hares T, Spencer J, et al. The nominal group technique: a research tool for general practice. Fam Pract 1993;10:76-81. (Pubitemid 23097262)
28. McKenna HP. The Delphi technique: a worthwhile approach for nursing? J Adv Nurs 1994;19:1221-5.
29. Crisp J, Pelletier D, Duffield C, et al. The Delphi method? Nurs Res 1997;46:116-18.
30. Hassen F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs 2000;32:1008-15.
31. Jones J, Hunter D. Consensus methods for medical and health services research. BMJ 1995;311:276-380.
32. Walker A, Selfe J. The Delphi method: a useful tool for the allied health researcher. Br J Ther Rehabil 1996;3:677-81.
33. Keeney S, Hassona F, McKennab HP. A critical review of the Delphi technique as a research methodology for nursing. Int J Nurs Stud 2001;38:195-200. (Pubitemid 33660489)
34. Campbell SM, Braspenning J, Hutchinson A, et al. Research methods used in developing and applying quality indicators in primary care. Qual Saf Health 2002;11:358-64. (Pubitemid 35463394)
35. Daykin N, Sanidas M, Barley V, et al. Developing consensus and interprofessional working in cancer services: the case of user involvement. J Interprof Care 2002;16:405-6. (Pubitemid 35402141)
36. Shield T, Campbell S, Rogers A, et al. Quality indicators for mental health care in primary care. Qual Saf Health 2003;12:100-6. (Pubitemid 36458146)
37. Boote J, Barber R, Cooper C. Principles and indicators of successful consumer involvement in NHS research: results of a Delphi study and subgroup analysis. Health Policy 2006;75:280-97. (Pubitemid 43042362)
38. Efstathiou N, Ameen J, Coll AM. A Delphi study to identify healthcare users' priorities for cancer care in Greece. Eur J Oncol Nurs 2008;12:262-371.
39. Lynn MR, Layman EL, Englebardt SP. Nursing administration research priorities: a National Delphi Study. J Nurs Adm 1998;28:7-11. (Pubitemid 28225944)
40. Linstone HA, Turoff M, eds. The Delphi method: techniques and applications. Reading, MA: Addison-Wesley, 1975.
41. Sackman H. Delphi Critique. Lexington, MA: Lexington Books, 1975.
42. McDonnell J, Meijler A, Kahan JP, et al. Panellist consistency in the assessment of medical appropriateness. Health Policy 1996;37:139-52. (Pubitemid 26255176)
43. Hardy DJ, O'Brien AP, Gaskin CJ, et al. Practical application of the Delphi technique in a bicultural mental health nursing study in New Zealand J Adv Nurs 2004;46:95-109. (Pubitemid 38491030)
44. Lemmer B. Successive surveys of an expert panel: research in decision making with health visitors. J Adv Nurs 1998;27:538-45. (Pubitemid 128451645)
45. Green B, Jones M, Hughes D, et al. Applying the Delphi technique in a study of GP's information requirement. Health Social Care Community 1999;7:198-205.
46. Richie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG. eds Analysis Qualitative Data. London: Routledge, 1994:173-94.
47. Boote J, Baird W, Beecroft C. Public involvement in the design stage of primary health research: a narrative review of case examples. Health Policy 2010;95:10-23.
48. Hanley B, Bradburn J, Barnes M, et al. Involving the public in NHS, public health and social care research: briefing notes for researchers. 2nd edn. Eastleigh: INVOLVE, 2004.
49. INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh: INVOLVE, 2012. http://www.invo.org.uk (accessed 8 Jul 2013).
50. Sitzia J, Wood N. Response rate in patient satisfaction research: an analysis of 210 published studies. Int J Qual Health Care 1998;10:311-17. (Pubitemid 28385074)
51. Arber S. Designing samples. In: Gilbert N, ed. Researching social life. London: SAGE Publications, 2001:68-92.
52. Edwards P, Roberts I, Clarke M, et al. Increasing response rates to postal questionnaires: systematic review. BMJ 2002;324:1183.
53. Beresford P, Campbell J. Disabled people, service users, user involvement and representation. Disability Soc 1994;9:315-25.
54. Morrow E, Boaz A, Brearley S, et al. Handbook of service user involvement in nursing and health care research, Chap 2. Chichester: Wiley Blackwell, 2012:22-24.
55. Abma TA, Widdershoven GAM. Sharing stories. Narrative and dialogue in responsive nursing evaluation. Eval Health Prof 2005;28:90-109. (Pubitemid 40216605)
56. McColl E, Jacoby A, Thomas L, et al. Design and use of questionnaires: a review of best practice applicable to surveys of health service staff and patients. Health Technol Asses 2001;5:101-32.
57. Peterson RA, Albaum G, Kerin RA. A note on alternative contact strategies in mail surveys. J Market Res Soc 1989;31:409-18.
58. Boote J, Baird W, Sutton A. Public involvement in the systematic review process in health and social care: a narrative review of case examples. Health Policy 2011;102:105-16.