Do not forget the professional - the value of the FIRST model for guiding the structural involvement of patients in rheumatology research

Health Expectations

Volumn 18, Issue 4, 2015, Pages 489-503

  de Wit, Maarten P T ^a   Elberse, Janneke E ^b   Broerse, Jacqueline E W ^b   Abma, Tineke A ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b ATHENA INSTITUTE   (Netherlands)

Author keywords

FIRST model; Patient participation; Patient research partners; Qualitative research; Rheumatology; User involvement

Indexed keywords

COOPERATION; FEMALE; HUMAN; IN SERVICE TRAINING; MALE; MIDDLE AGED; NETHERLANDS; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PERSONNEL; PROCEDURES; RESEARCH; RHEUMATOLOGY; SOCIAL SUPPORT; THEORETICAL MODEL;

COOPERATIVE BEHAVIOR; FEMALE; HUMANS; INSERVICE TRAINING; MALE; MIDDLE AGED; MODELS, THEORETICAL; NETHERLANDS; PATIENT PARTICIPATION; RESEARCH; RESEARCH PERSONNEL; RHEUMATOLOGY; SOCIAL SUPPORT;

EID: 84937518933     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/hex.12048     Document Type: Article

References (56)

1. Abma TA, Nierse C, Widdershoven G. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qualitative Health Research, 2009; 19: 401-415.
2. Staley K. Summary Exploring Impact: Public Involvement in NHS, Public Health and Social Care Research. Eastleigh: Involve, 2009.
3. Abma TA, Broerse JEW. Zeggenschap in wetenschap, patiëntenparticipatie in theorie en praktijk [Have a say in science. Patient Participation in Theory and Practise]. Den Haag: Lemma, 2007.
4. Schipper K. Patient Participation & Knowledge [thesis]. Amsterdam: VU University, 2011.
5. Stevens T, Wilde D, Hunt J, Ahmedzai SH. Overcoming the challenges to consumer involvement in cancer research. Health Expectations, 2003; 6: 81-88.
6. Kirwan JR, Ahlmen M, de Wit M et al. Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. Journal of Rheumatology, 2005; 32: 2246-2249.
7. Kirwan JR, Hewlett SE, Heiberg T et al. Incorporating the patient perspective into outcome assessment in rheumatoid arthritis-progress at OMERACT 7. Journal of Rheumatology, 2005; 32: 2250-2256.
8. Caron-Flinterman JF, Broerse JEW, Bunders JFG Patient partnership in decision-making on biomedical research - Changing the network. Science Technology & Human Values, 2007; 32: 339-368.
9. 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. Physical Therapy, 2010; 90: 450-460.
10. INVOLVE. Supporting Public Involvement in NHS, Public Health and Social care Research. Available from: http://www.invo.org.uk/, accessed 18 February 2011.
11. 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 Musculoskeletal Disorders, 2009; 10: 85.
12. Beresford P. User involvement, research and health inequalities: developing new directions. Health and Social Care in the Community, 2007; 15: 306-312.
13. Lindenmeyer A, Hearnshaw H, Sturt J, Ormerod R, Aitchison G. Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group: a qualitative case study. Health Expectations, 2007; 10: 268-277.
14. Ward PR, Thompson J, Barber R et al. Critical perspectives on 'consumer involvement' in health research: epistemological dissonance and the know-do gap. Journal of Sociology, 2009; 46: 63-82.
15. de Wit MPT, Berlo SE, Aanerud GJ et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Annals of the Rheumatic Diseases, 2011; 70: 722-726.
16. PatientPartner. Patient Involvement in Clinical Research. A Guide for Patient Organisations and Patient Representatives. Soest: VSOP, 2011.
17. Schipper K, Abma TA, van Zadelhoff E, van de Griendt J, Nierse CJ, Widdershoven GA. What does it mean to be a patient research partner? An ethnodrama. Qualitative Inquiry, 2010; 16: 10.
18. Nicklin J, Cramp F, Kirwan J, Urban M, Hewlett S. Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care & Research, 2010; 62: 1552-1558.
19. Abma TA, Broerse J. Patient participation as dialogue: setting research agendas. Health Expectations, 2010; 13: 160-173.
20. Diaz Del Campo P, Gracia J, Blasco JA, Andradas E. A strategy for patient involvement in clinical practice guidelines: methodological approaches. BMJ Quality & Safety, 2011; 20: 779-784.
21. van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development. Health Care Analysis, 2009; 17: 198-216.
22. Facey K, Boivin A, Gracia J et al. Patients' perspectives in health technology assessment: a route to robust evidence and fair deliberation. International Journal of Technology Assessment in Health Care, 2010; 26: 334-340.
23. Bridges JF, Jones C. Patient-based health technology assessment: a vision of the future. International Journal of Technology Assessment in Health Care, 2007; 23: 30-35.
24. 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: 105-116.
25. Collyar DE. The value of clinical trials from a patient perspective. The Breast Journal, 2000; 6: 310-314.
26. PatientPartner. Patient Involvement in Clinical Research. A Guide for Sponsors and Investigators. Soest: VSOP, 2011.
27. Baur VE, van Elteren AHG, Nierse CJ, Abma TA. Dealing with distrust and power dynamics: asymmetric relations among stakeholders in responsive evaluation. Evaluation, 2010; 16: 233-248.
28. Thompson J, Barber R, Ward PR et al. Health researchers' attitudes towards public involvement in health research. Health Expectations, 2009; 12: 209-220.
29. Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Social Science & Medicines, 2005; 60: 2575-2584.
30. 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. Annals of the Rheumatic Diseases, 2011; 70: 935-942.
31. Abma TA. Patients as partners in a health research agenda setting: the feasibility of a participatory methodology. Evaluation & The Health Professions, 2006; 29: 424-439.
32. Nierse CJ, Abma TA. Developing voice and empowerment: the first step towards a broad consultation in research agenda setting. Journal of Intellectual Disability Research, 2011; 55: 411-421.
33. Abma TA. Patient participation in health research: research with and for people with spinal cord injuries. Qualitative Health Research, 2005; 15: 1310-1328.
34. Broerse JEW, Elberse JE, Caron-Flinterman JFW, Zweekhorst MBM. Enhancing a transition towards a needs-oriented health research system. In: Broerse JEW, Bunders JFG (eds) Transitions in Health Systems: Dealing with Persistent Problems. Amsterdam: VU University Press 2010. 181-205
35. Baart IL, Abma TA. Patient participation in fundamental psychiatric genomics research: a Dutch case study. Health Expectations, 2011; 14: 240-249.
36. van Staa A, Jedeloo S, Latour JM, Trappenburg MJ. Exciting but exhausting: experiences with participatory research with chronically ill adolescents. Health Expectations, 2010; 13: 95-107.
37. van de Bovenkamp HM, Trappenburg MJ, Grit KJ. Patient participation in collective healthcare decision making: the Dutch model. Health Expectations, 2010; 13: 73-85.
38. Kirwan J, Heiberg T, Hewlett S et al. Outcomes from the patient perspective workshop at OMERACT 6. Journal of Rheumatology, 2003; 30: 868-872.
39. Kirwan JR, Newman S, Tugwell PS et al. Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9. Journal of Rheumatology, 2009; 36: 2071-2076.
40. Shea B, Santesso N, Qualman A et al. Consumer-driven health care: building partnerships in research. Health Expectations, 2005; 8: 352-359.
41. Hewlett S, De Wit M, Richards P et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis & Rheumatism, 2006; 55: 676-680.
42. de Wit MPT, Boonen A, Essers M et al. Onderzoekspartners garanderen patiëntenperspectief: Diversiteit in bijdragen aan onderzoek. [Patient research partners guarantee the patient perspective: Diversity in contributions to research] Ned Ts voor Reum. 2011.
43. Linnan L, Steckler A. Process evaluation for public health interventions and research: an overview. In: Linnan L, Steckler A (eds) Process Evaluation for Public Health Interventions and Research. San Francisco: Jossey-Bass, 2002: 1-24.
44. van Mierlo B, Regeer B, van Amstel M et al. Reflexive Monitoring in Action. A Guide for Monitoring System Innovation Projects. Wageningen/Amsterdam: Communication and Innovation Studies, Wageningen University; Athena Institute, VU University Amsterdam, 2010.
45. Abma TA, Widdershoven GAM. Evaluation as a relationally responsible practice. In: Denzin N, Lincoln Y (eds) Handbook for Qualitative Inquiry. California: SAGE Publications Ltd., 2011: 669-680.
46. Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ, 2001; 322: 1115-1117.
47. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative Health Research, 2005; 15: 1277-1288.
48. Greene J, Benjamin L, Goodyear L. The merits of mixing methods in evaluation. Evaluation, 2001; 7: 25-44.
49. Greene JC, Kreider H, Mayer E. Combining qualitative and quantitative methods in social inquiry. In: Somekh B, Lewin C (eds) Research Methods in the Social Sciences. London: Sage, 2005: 274-281.
50. Elberse JE, Caron-Flinterman JF, Broerse JE. Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expectations, 2011; 14: 225-239.
51. van de Goor SS, Hoeve D, Kraaimaat FW et al. E-health voor chronisch lichamelijke aandoeningen: De meerwaarde van onderzoekspartners [translation: "E-health for people with chronic somatic conditions. The added value of patient research partners"]. ZonMW symposium Doelmatigheidsonderzoek. Den Haag; 2009.
52. Creech H, Willard T. Strategic Intentions: Managing Knowledge Networks for Sustainable Development. Manitoba: International institute for sustainable development, 2001.
53. Wenger E. Communities of Practice: Learning, Meaning and Identity. Cambridge: Cambridge University Press, 1999.
54. Le May A. Communities of Practice in Health and Social Care. Hoboken (NJ): Wiley-Blackwell, 2008.
55. Nierse CJ, Schipper K, van Zadelhoff E, van de Griendt J, Abma TA. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expectations, 2012; 15: 242-254.
56. Elberse JE, de Wit MPT, Velthuis HMA et al. Netwerk Onderzoekspartners in de reumatologie. Getrainde patientenvertegenwoordigers betrokken bij onderzoek [translation: Educated patient representatives involved in research]. Dutch Journal of Rheumatology, 2009; 4: 40-44.