Facilitating and inhibiting factors for long-term involvement of patients at outcome conferences-lessons learnt from a decade of collaboration in OMERACT: A qualitative study

BMJ Open

Volumn 3, Issue 8, 2013, Pages

  De Wit, Maarten ^a   Abma, Tineke ^a   Koelewijn Van Loon, Marije ^b   Collins, Sarah ^c   Kirwan, John ^d  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b MAASTRICHT UNIVERSITY   (Netherlands)

^c Patient Research Partner   (United Kingdom)

^d UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ANKYLOSING SPONDYLITIS; ARTICLE; CONSENSUS; CONTENT ANALYSIS; EVALUATION; FEMALE; FIBROMYALGIA; GOUT; HUMAN; INFORMATION PROCESSING; MALE; MEDICAL RESEARCH; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; RHEUMATOID ARTHRITIS; VASCULITIS;

EID: 84885348617     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2013-003311     Document Type: Article

References (43)

1. O'Connell MP. Positioning impact on the surgical patient. Nurs Clin North Am 2006;41:173-92., v. (Pubitemid 43674426)
2. PatientPartner. Patient involvement in clinical research. A guide for sponsors and investigators. Soest: VSOP, 2011.
3. Facey K, Boivin A, Gracia J., et al Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care 2010;26:334-40.
4. Gagnon MP, Lepage-Savary D, Gagnon J., et al Introducing patient perspective in health technology assessment at the local level. BMC Health Serv Res 2009;9:54.
5. Tritter JQ, McCallum A. The snakes and ladders of user involvement: moving beyond Arnstein. Health Policy 2006;76:156-68. (Pubitemid 43330599)
6. Abma TA, Nierse C, Widdershoven G. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009;19:401-15.
7. Nilsen ES, Myrhaug HT, Johansen M, et al Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev 2006;(3):CD004563.
8. De Wit M., Abma T, Koelewijn-Van Loon M, et al. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013;3:e002241. doi:10.1136/bmjopen-2012-002241
9. 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)
10. de Wit MPT, Berlo SE, Aanerud GJ, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis 2011;70:722-6.
11. Abma TA. Patient participation in health research: research with and for people with spinal cord injuries. Qual Health Res 2005;15:1310-28. (Pubitemid 41824777)
12. Nierse CJ, Abma TA Developing voice and empowerment: the first step towards a broad consultation in research agenda setting. J Intellect Disabil Res 2011;55:411-21.
13. Schipper K, Abma TA Coping, family and mastery: top priorities for social science research by patients with chronic kidney disease. Nephrol Dial Transplant 2011;26:3189-95.
14. Staniszewska S, Haywood KL, Brett J, et al Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012;5:79-87.
15. Nicklin J, Cramp F, Kirwan J., et al Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Res 2010;62:1552-8.
16. Bingham III CO, Alten R, de Wit MP. The importance of patient participation in measuring rheumatoid arthritis flares. Ann Rheum Dis 2012;71:1107-9.
17. Gossec L, Paternotte S, Aanerud G.J., et al Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Ann Rheum Dis 2011;70:935-42.
18. Nierse CJ, Schipper K, Van Zadelhoff E. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expect 2012;15:242-54.
19. Schipper K. Patient participation & knowledge [thesis]. VU University, 2011.
20. OMERACT. Guiding principles for patient research partner participation in OMERACT. http://www.omeract.org/pdf/2011-03- 27%20Agreed%20Patient%20Participation%20Policy.pdf (accessed 18 Oct 2012).
21. de Wit M.P., Koelewijn-Van Loon MS, Collins S, et al. "If I Wasn't This Robust,": Patients' expectations and experiences at the Outcome Measures in Rheumatology Conference 2010. The Patient 2013. In press. doi: 10.1007/s40271-013-0017-0
22. Repping-Wuts H. Fatigue in patients with rheumatoid arthritis (thesis). Nijmegen University, 2009.
23. Nikolaus S. Fatigue in rheumatoid arthritis: from patient experience to measurement (thesis). University of Twente, 2012.
24. Arksey H. Expert and lay participation in the construction of medical knowledge. Sociol Health Illn 1994;16:448-68.
25. Popay J, Williams G. Public health research and lay knowledge. Soc Sci Med 1996;42:759-68. (Pubitemid 26067882)
26. Schipper K, Abma TA, Van Zadelhoff E, et al What does it mean to be a patient research partner? An ethnodrama. Qual Inq 2010;16:10.
27. Caron-Flinterman J.F., Broerse JE, Bunders JF The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med 2005;60:2575-84. (Pubitemid 40462381)
28. Jinks C, Ong BN, O'Neill TJ. The Keele community knee pain forum: action research to engage with stakeholders about the prevention of knee pain and disability. BMC Musculoskelet Disord 2009;10:85.
29. Elberse JE, Caron-Flinterman JF, Broerse JE Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expect 2011;14:225-39.
30. Stake RE. Standards-based and responsive evaluations. Thousand Oaks: Sage Publications, 2004.
31. Boers M, Strand V, Simon L., et al OMERACT 8-8th International consensus conference on outcome measures in rheumatology clinical trials. J Rheumatol 2007;34:599. (Pubitemid 46364017)
32. Kirwan J, Heiberg T, Hewlett S., et al Outcomes from the patient perspective workshop at OMERACT 6. J Rheumatol 2003;30:868-72. (Pubitemid 36402790)
33. Boers M, Brooks P, Strand C.V., et al The OMERACT filter for outcome measures in rheumatology. J Rheumatol 1998;25:198-9.
34. Saag KG. OMERACT 6 brings new perspectives to rheumatology measurement research. J Rheumatol 2003;30:639-41. (Pubitemid 36402751)
35. Quest E, Aanerud GJ, Kaarud S, et al Patients' perspective. J Rheumatol 2003;30:884-5. (Pubitemid 36402794)
36. Richards P, De Wit MPT. OMERACT Glossary. http://www.omeract.org/pdf/ OMERACT11%20Glossary.pdf (accessed 20 Oct 2012).
37. Lindenmeyer A, Hearnshaw H, Sturt J. Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study. Health Expect 2007;10:268-77. (Pubitemid 47196356)
38. Abma TA, Broerse J. Patient participation as dialogue: setting research agendas. Health Expect 2010;13:160-73.
39. Van De Bovenkamp HM. The limits of patient power. Examining active citizenship in Dutch health care. Dissertation. Erasmus University, 2010.
40. Abma TA, Molewijk B, Widdershoven G. Good care in ongoing dialogue. Improving the quality of care through moral deliberation and responsive evaluation. Health Care Anal 2009;17:217-35.
41. Plaat MVD. Locating the feminist scholar: relational empowerment and social activism. Qual Health Res 1999;9:773-85.
42. Baur VE, Abma TA, Widdershoven GA Participation of marginalized groups in evaluation: mission impossible? Eval Program Plann 2010;33:238-45.
43. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med 1995;41:1667-76. (Pubitemid 26473708)