Involving patient research partners has a significant impact on outcomes research: A responsive evaluation of the international OMERACT conferences

BMJ Open

Volumn 3, Issue 5, 2013, Pages

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

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b MAASTRICHT UNIVERSITY MEDICAL CENTER   (Netherlands)

^c Patient Research Partner   (United Kingdom)

^d UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CLINICAL TRIAL (TOPIC); CONTENT ANALYSIS; DISEASE EXACERBATION; DRUG INDUSTRY; FATIGUE; FEMALE; FIBROMYALGIA; GOUT; HUMAN; MALAYSIA; MALE; NUCLEAR MAGNETIC RESONANCE IMAGING; OUTCOME ASSESSMENT; OUTCOMES RESEARCH; PATIENT PARTICIPATION; PRODUCTIVITY; PSORIATIC ARTHRITIS; PSYCHOSOCIAL CARE; REMISSION; RHEUMATOLOGY; SCIENTIST; SELF REPORT; SEMI STRUCTURED INTERVIEW; SLEEP DISORDER; THEMATIC ANALYSIS; VASCULITIS; WELLBEING;

EID: 84878391110     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2012-002241     Document Type: Article

References (82)

1. Keizer B, Bless R. Pilot study on the position of health consumer and patients' organisations in seven EU countries. Den Haag: ZonMW, 2010:54.
2. Involve. People & participation; how to put citizens at the heart of decision-making. London: Beacon Press, 2005.
3. Staley K. Summary exploring impact: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE, 2009.
4. Wright MT, Roche B, von Unger H, et al. A call for an international collaboration on participatory research for health. Health Promot Int 2010;25:115-22.
5. Abma TA. Patients as partners in a health research agenda setting: the feasibility of a participatory methodology. Eval Health Prof 2006;29:424-39. (Pubitemid 44705930)
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. Abma TA, Broerse JE. Patient participation as dialogue: setting research agendas. Health Expect 2010;13:160-73.
8. Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med 2005;60:2575-84. (Pubitemid 40462381)
9. 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.
10. Speight J, Barendse SM. FDA guidance on patient reported outcomes. BMJ 2010;340:c2921.
11. Rowen D, Carlton J, Brazier JE, et al. FDA on PROMs. Two important points. BMJ 2010;341:c5454.
12. Williamson PR, Altman DG, Blazeby JM, et al. The COMET (Core Outcome Measures in Effectiveness Trials) Initiative. Trials 2011;12 (Suppl 1).
13. Clarke M. Standardising outcomes for clinical trials and systematic reviews. Trials 2007;8:39.
14. Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med 2011;8:1-5.
15. Williamson P, Clarke M. The COMET (Core Outcome Measures in Effectiveness Trials) initiative: its role in improving Cochrane reviews. Cochrane Database Syst Rev 2012;5:ED000041.
16. Saag KG. OMERACT 6 brings new perspectives to rheumatology measurement research. J Rheumatol 2003;30:639-41. (Pubitemid 36402751)
17. Heller JE, Shadick NA. Outcomes in rheumatoid arthritis: incorporating the patient perspective. Curr Opin Rheumatol 2007;19:101-05. (Pubitemid 46208765)
18. 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).
19. Guba EG, Lincoln YS. Effective evaluation. Improving the usefulness of evaluation results through responsive and naturalistic approaches. San Francisco: Jossey-Bass Publishers, 1988.
20. Abma TA, Widdershoven GAM. Evaluation as a relationally responsible practice. In: Denzin N, Lincoln Y, eds. Handbook for qualitative inquiry. Los Angeles: SAGE Publications Ltd., 2011:669-80.
21. Lincoln Y, Guba EG. Naturalistic inquiry. NewburyPark: SAGE, 1985.
22. Hewlett S, Carr M, Ryan S, et al. Outcomes generated by patients with rheumatoid arthritis: how important are they? Musculoskelet Care 2005;3:131-42.
23. Hewlett S, Cockshott Z, Byron M, et al. Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored. Arthritis Rheum 2005;53:697-702. (Pubitemid 41463834)
24. 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)
25. 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.
26. Tugwell P, Boers M. OMERACT conference on outcome measures in rheumatoid arthritis clinical trials: introduction. J Rheumatol 1993;20:528-30. (Pubitemid 23102483)
27. Brooks PM, Boers M, Tugwell P. OMERACT III: the 'ACT' revisited. J Rheum 1997;24:764-5.
28. Wells G, Anderson J, Beaton D, et al. Minimal clinically important difference module: summary, recommendations, and research agenda. J Rheumatol 2001;28:452-4. (Pubitemid 32165168)
29. Kirwan JR, Carr A, Gluck O, et al. Proposal for inclusion of a 'Patient's perceptions' module in OMERACT VI [uppublished], 2000.
30. Quest E, Aanerud GJ, Kaarud S, et al. Patients' perspective. J Rheumatol 2003;30:884-5. (Pubitemid 36402794)
31. Brooks PM, Tugwell P, Strand C, et al. OMERACT 6: international consensus conference on outcome measures in rheumatology: introduction. J Rheum 2003;30:866-7. (Pubitemid 36402789)
32. Kirwan J. The patient perspective workshop at OMERACT 6: Rationale and methodology [unpublished preconference paper]. 2002.
33. Tugwell P, Boers M, Brooks P, et al. OMERACT: an international initiative to improve outcome measurement in rheumatology. Trials 2007;8:38.
34. Hewlett SA. Patients and clinicians have different perspectives on outcomes in arthritis. J Rheumatol 2003;30:877-9. (Pubitemid 36402792)
35. Leeb BF, Sautner J, Leeb BA, et al. Lack of agreement between patients' and physicians' perspectives of rheumatoid arthritis disease activity changes. Scand J Rheumatol 2006;35:441-6. (Pubitemid 47215711)
36. Kvien TK, Heiberg T. Patient perspective in outcome assessments- perceptions or something more? J Rheumatol 2003;30:873-6. (Pubitemid 36402791)
37. Carr A, Hewlett S, Hughes R, et al. Rheumatology outcomes: the patient's perspective. J Rheumatol 2003;30:880-3. (Pubitemid 36402793)
38. Ahlmen M, Nordenskiold U, Archenholtz B, et al. Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients. Rheumatology (Oxford) 2005;44:105-10. (Pubitemid 40124341)
39. Rupp I, Boshuizen HC, Roorda LD, et al. Course of patient-reported health outcomes in rheumatoid arthritis: comparison of longitudinal and cross-sectional approaches. J Rheumatol 2006;33:228-33. (Pubitemid 43209296)
40. Gossec L, Paternotte S, Aanerud GJ, 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.
41. Rupp I, Boshuizen HC, Jacobi CE, et al. Impact of fatigue on health-related quality of life in rheumatoid arthritis. Arthritis Rheum 2004;51:578-85. (Pubitemid 39056245)
42. Repping-Wuts H, Uitterhoeve R, van Riel P, et al. Fatigue as experienced by patients with rheumatoid arthritis (RA): a qualitative study. Intl J Nurs Stud 2008;8):995-102.
43. Nikolaus S, Bode C, Taal E, et al. Four different patterns of fatigue in rheumatoid arthritis patients: results of a Q-sort study. Rheumatology 2010;49:2191-9.
44. Hewlett S, Hehir M, Kirwan JR. Measuring fatigue in rheumatoid arthritis: a systematic review of scales in use. Arthritis Rheum 2007;57:429-39. (Pubitemid 46682530)
45. Kirwan JR, Hewlett S. Patient perspective: reasons and methods for measuring fatigue in rheumatoid arthritis. J Rheumatol 2007;34:1171-3. (Pubitemid 46774869)
46. Hewlett S, Chalder T, Choy E, et al. Fatigue in rheumatoid arthritis: time for a conceptual model. Rheumatology 2011;50:1004-6.
47. Kirwan JR, Minnock P, Adebajo A, et al. Patient perspective: fatigue as a recommended patient centered outcome measure in rheumatoid arthritis. J Rheumatol 2007;34:1174-7. (Pubitemid 46774870)
48. Pincus T, Sokka T. Complexities in the quantitative assessment of patients with rheumatic diseases in clinical trials and clinical care. Clin Exp Rheumatol 2005;23(5 Suppl 39):S1-9. (Pubitemid 46661463)
49. Nicklin J, Cramp F, Kirwan J, et al. Measuring fatigue in rheumatoid arthritis: a cross-sectional study to evaluate the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional questionnaire, visual analog scales, and numerical rating scales. Arthritis Care Res (Hoboken) 2010;62:1559-68.
50. Nikolaus S, van de Laar MA. Measuring fatigue in rheumatoid arthritis. Nat Rev Rheumatol 2011;7:562-4.
51. Repping-Wuts H. Fatigue in patients with rheumatoid arthritis (thesis). Nijmegen University, 2009.
52. Wolfe F, Hawley DJ, Wilson K. The prevalence and meaning of fatigue in rheumatic disease. J Rheumatol 1996;23:1407-17. (Pubitemid 26258765)
53. Tack BB. Fatigue in rheumatoid arthritis. Conditions, strategies, and consequences. Arthritis Care Res 1990;3:65-70. (Pubitemid 20360402)
54. Crosby LJ. Factors which contribute to fatigue associated with rheumatoid arthritis. J Adv Nurs 1991;16:974-81.
55. Garrett S, Jenkinson T, Kennedy LG, et al. A new approach to defining disease status in ankylosing spondylitis: the Bath Ankylosing Spondylitis Disease Activity Index. J Rheumatol 1994;21:2286-91.
56. Newman SP. Psychosocial measures in musculoskeletal trials. J Rheumatol 1997;24:979-84. (Pubitemid 27223641)
57. Brooks P, McFarlane AC, Newman S, et al. Psychosocial measures. J Rheumatol 1997;24:1008-11.
58. Gladman DD, Mease PJ, Strand V, et al. Consensus on a core set of domains for psoriatic arthritis. J Rheumatol 2007;34:1167-70. (Pubitemid 46774868)
59. Mease P, Arnold LM, Choy EH, et al. Fibromyalgia syndrome module at OMERACT 9: domain construct. J Rheumatol 2009;36:2318-29.
60. Choy EH, Arnold LM, Clauw DJ, et al. Content and criterion validity of the preliminary core dataset for clinical trials in fibromyalgia syndrome. J Rheumatol 2009;36:2330-4.
61. Taylor WJ, Schumacher HR Jr, Baraf HS, et al. A modified Delphi exercise to determine the extent of consensus with OMERACT outcome domains for studies of acute and chronic gout. Ann Rheum Dis 2008;67:888-91. (Pubitemid 351829395)
62. Merkel PA, Aydin SZ, Boers M, et al. The OMERACT core set of outcome measures for use in clinical trials of ANCA-associated vasculitis. J Rheumatol 2011;38:1480-6.
63. van Tuyl LH, Smolen JS, Wells GA, et al. Patient perspective on remission in rheumatoid arthritis. J Rheumatol 2011;38:1735-8.
64. Boers M, Brooks P, Strand CV, et al The OMERACT filter for outcome measures in rheumatology. J Rheumatol 1998;25:198-9.
65. Lassere MN, Johnson KR, Boers M, et al Standardized assessment of adverse events in rheumatology clinical trials: summary of the OMERACT 7 drug safety module update. J Rheumatol 2005;32:2037-41. (Pubitemid 41429040)
66. Bingham CO 3rd, Alten R, de Wit MP. The importance of patient participation in measuring rheumatoid arthritis flares. Ann Rheum Dis 2012.
67. Kristjansson E, Tugwell PS, Wilson AJ, et al. Development of the effective musculoskeletal consumer scale. J Rheumatol 2007;34:1392-400. (Pubitemid 46898127)
68. Abma TA, Nierse CJ, Widdershoven GA. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qual Health Res 2009;19:401-15.
69. Kjeken I, Ziegler C, Skrolsvik J, et al How to develop patient-centered research: some perspectives based on surveys among people with rheumatic diseases in Scandinavia. Phys Ther 2010;90:450-60.
70. Akerhielm CE. Patient participation in research - a Swedish model. Ann Rheum Dis 2009;68(Suppl 3):800.
71. Akerhielm CE. Patient research partners - a way to participation and influence in research. Ann Rheum Dis 2010;69(Suppl 3):753.
72. Hewlett S. Learnings from the Bristol experience-practicalities of a decade of patient involvement in research on a local level. Ann Rheum Dis 2010;69(Suppl 3):29.
73. 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)
74. Gossec L, Dougados M, Rincheval N, et al. Elaboration of the preliminary Rheumatoid Arthritis Impact of Disease (RAID) score: a EULAR initiative. Ann Rheum Dis 2009;68:1680-5.
75. Stiggelbout AM, Weijden TV, Wit MP, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ 2012;344:e256.
76. Beresford P. User involvement, research and health inequalities: developing new directions. Health Soc Care Community 2007;15:306-12.
77. Ward PR, Thompson J, Barber R, et al. Critical perspectives on 'consumer involvement' in health research: epistemological dissonance and the know-do gap. J Sociol 2009;46:63-82.
78. Lindenmeyer A, Hearnshaw H, Sturt J, et al. 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)
79. Broerse JEW, Elberse JE, Caron-Flinterman JFW, et al. Enhancing a transition towards a needs-oriented health research system. In: Broerse JEWBunders JFG, eds. Transitions in health systems: dealing with persistent problems. Amsterdam: VU University Press, 2010:181-205.
80. Habermas J. Theorie des kommunikativen Handelns. Bd. 1. Handlungsrationalität und gesellschaftliche Rationalisierung. Zweite Auflage 1982 edn. Frankfurt am Main: Suhrkamp, 1981.
81. Schipper K. Patient participation & knowledge [thesis]. VU University, 2011.
82. 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.