An empirical study of patient participation in guideline development: Exploring the potential for articulating patient knowledge in evidence-based epistemic settings

Health Expectations

Volumn 18, Issue 5, 2015, Pages 942-955

  van de Bovenkamp, Hester M ^a   Zuiderent Jerak, Teun ^a  

^a ERASMUS UNIVERSITY ROTTERDAM   (Netherlands)

Author keywords

Guideline development; Patient participation; Patient centered care

Indexed keywords

ATTITUDE TO HEALTH; DECISION MAKING; EVIDENCE BASED MEDICINE; HUMAN; INTERVIEW; MANAGEMENT; NETHERLANDS; PATIENT CARE; PATIENT PARTICIPATION; PRACTICE GUIDELINE; PROCEDURES;

DECISION MAKING; EVIDENCE-BASED MEDICINE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INTERVIEWS AS TOPIC; NETHERLANDS; PATIENT PARTICIPATION; PATIENT-CENTERED CARE; POLICY MAKING; PRACTICE GUIDELINES AS TOPIC;

EID: 84942294060     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/hex.12067     Document Type: Article

References (44)

1. Van de Bovenkamp HM. The Limits of Patient Power: Examining active citizenship in Dutch health care, institute of Health Policy and Management. Ph.d.thesis. Erasmus University Rotterdam: Rotterdam, 2010.
2. Bensing J. Bridging the gap: the separate worlds of evidence based medicine and patient- centered medicine. Patient Education and Counseling, 2000; 39: 17-25.
3. Caron-Flinterman JF. A New Voice in Science: Patient Participation in Decision Making on Biomedical Research. Amsterdam: Vrije Universiteit Amsterdam, 2005.
4. Hibbard JH. Engaging health care consumers to improve the quality of care. Medical Care, 2003; 41: I61-I70.
5. Boot JD, Telford R, Cooper CL. Consumer involvement in health research: a review and research agenda. Health Policy, 2002; 61: 213-236.
6. Epstein S. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkely: University of California Press, 1996.
7. Moreira T. The Transformation of Contemporary Health Care; the Market, the Laboratory, and the Forum. New York and London: Routledge, 2012.
8. Rabeharisoa V. From representation to mediation: the shaping of collective mobilization on muscular dystrophy in France. Social Science & Medicine, 2006; 62: 564-576.
9. Rabeharisoa V, Callon M. Patients and scientists in French muscular dystrophy research in states of knowledge. In: Jasanoff S (ed.) The Co-Production of Science and Social Order. London and New York: Routledge, 2004: 142-160.
10. Van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development. Health Care Analysis, 2009; 17: 198-216.
11. Boivin A, Green J, Van der Meulen J, Legare F, Nolte E. Why consider patients' preferences? a discourse analysis of clinical practice guideline developers. Medical Care., 2009; 47: 908-915.
12. AGREE. Appraisal of Guidelines for Research & Evaluation (AGREE) Instrument. London: AGREE Research Trust, 2001.
13. Salmon P, Hall GM. Patient empowerment or the emperor's new clothes. Journal of the Royal Society of Medicine, 2004; 97: 53-56.
14. Epstein S. Measuring success: scientific, institutional and cultural effects on patient advocacy. In: Hoffman B, Tomes N, Grob R, Schlesinger M. (eds) Patients as Policy Actors. New Brunswick, New Jersey and London: Rutgers University Press, 2011: 257-277.
15. Grob R, Schlesinger M. Epilogue: principles for engaging patients in U.S. health care and policy. In: Hoffman B, Tomes N, Grob R, Schlesinger M. (eds) Patients as Policy Actors. New Brunswick, New Jersey and London: Rutgers University Press, 2011: 278-292.
16. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (review). Cochrane Database of Systematic Reviews, 2006; Art. No.:CD004563.
17. Van Wersch A, Eccles M. Involvement in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme. Journal for Quality in Health Care, 2001; 10: 10-16.
18. Van de Bovenkamp HM, Trappenburg MJ, Grit KJ. Patient participation in collective health care decision making: the Dutch model. Health Expectations, 2010; 13: 73-85.
19. Martin GP. Citizens, publics, others and their role in participatory processes: a commentary on Lehoux, Daudelin and Abelson. Social Science & Medicine, 2012; 74: 1851-1853.
20. Wright D, Foster C, Amir Z, Elliott J, Wilson R. Critical appraisal guidelines for assessing the quality and impact of user involvement in research. Health Expectations, 2010; 13: 359-368.
21. Arnstein SR. A ladder of citizen participation. Journal of the American Planning Association, 1969; 39: 216-224.
22. Elberse JE, Caron-Flinterman JF, Broerse JEW. Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expectations, 2010; 14: 225-239.
23. Bastian H. Raising the standard: practice guidelines and consumer participation. International Journal for Quality in Health Care, 1996; 8: 485-490.
24. Duff LA, Kelson M, Marriott S et al. Clinical guidelines: involving patients and users of services. Journal of Clinical Effectiveness, 1996; 1: 104-112.
25. Zuiderent-Jerak T, Bal R, Berg M. Patients and their Problems: situated alliances of Patient-Centred Care and Pathway Development. In: Timmermann C, Toon E (eds) Cancer Patients, Cancer Pathways; Historical and Sociological Perspectives. Basingstoke and New York: Palgrave Macmillan, 2012: 204-229.
26. Boivin A, Currie K, Fervers B et al. Patient and public involvement in clinical guidelines:international experiences and future perspectives. BMJ QUality and Safety, 2010; 19: e22-e26.
27. Moreira T, May C, Mason J, Eccles M. A new method of analysis enabled a better understanding of clinical practice guideline development processes. Journal of Clinical Epidemiology, 2006; 59: 1199-1206.
28. Wensing M, Elwyn G. Improving the quality of health care: methods for incorporating patients' views in health care. BMJ, 2003; 326: 877-879.
29. Zuiderent-Jerak T, Jerak-Zuiderent S, Van de Bovenkamp H et al. Variatie in Richtlijnen: Wat is Het problem? Den Haag: Institute of health policy and management, 2011.
30. Dutch Council for Quality of Healthcare. TOP25 - Niet Aan Specifieke Aandoeningen Gerelateerde Onderwerpen (NASAGO'S), 2010. Available at: http://www.regieraad.nl/top25, accessed 29 May 2012.
31. Bate P, Robert G. Bringing User Experience to Healthcare Improvement; The concepts, methods and practices of experience-based design. Oxford and New York: Radcliffe Publishing, 2007.
32. Evans JG. Evidence-based and evidence-biased medicine. Age and Ageing, 1995; 24: 461-463.
33. Gray DP. Evidence-based medicine and patient-centred medicine; the need to harmonize. Journal of Health Services Research and Policy, 2005; 10: 66-68.
34. Hetlevik I. Evidence-based medicine in general practice: a hindrance to optimal medical care? Scandinavian Journal of Primary Health Care, 2004; 22: 136-140.
35. Mykhalovskiy E, Weir L. The problem of evidence-based medicine; directions for social science. Social Science & Medicine, 2004; 59: 1059-1069.
36. Tanenbaum SJ. Evidence-based practice as mental health policy: three controversies and a caveat. Health Affairs, 2005; 24: 163-174.
37. Tonelli MR. Integrating evidence into clinical practice: an alternative to evidence-based approaches. Journal of Evaluation in Clinical Practice, 2006; 12: 248-256.
38. Daudelin G, Lehoux P, Abelson J, Denis JL. The integration of citizens into a science /policy network in genetics: governance arrangements and asymmetry in expertise. Health Expectations, 2010; 14: 261-271.
39. Légaré F, Boivin A, Van der Weijden T et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Medical Decision Making, 2011; 31: E45-E74.
40. Iedema R, Merrick E, Piper D et al. Codesigning as a discursive practice in emergency health services: the architecture of deliberation. The Journal of Applied Behavioral Science, 2010; 46: 73-91.
41. 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.
42. Rogers W. Evidence-based medicine in practice: limiting or facilitating patient choice? Health Expectations, 2002; 5: 95-103.
43. Schofield MJ, Walkom S, Sanson-Fischer R. Patient-provider agreement on guidelines for preparation for breast cancer treatment. Behavioral Medicine, 1997; 23: 36-45.
44. The AGREE Next Steps Consortium. Apraisal of Guidelines for Research and Evaluation II. London: The AGREE research trust, 2009.