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Published in: Health Care Analysis 3/2009

Open Access 01-09-2009 | Original Article

Reconsidering Patient Participation in Guideline Development

Authors: Hester M. van de Bovenkamp, Margo J. Trappenburg

Published in: Health Care Analysis | Issue 3/2009

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Abstract

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered.
Footnotes
1
Taking into account every possible argument in the development process other than medical evidence will make deviation from these guidelines ever more difficult. Other arguments that are already used are cost-efficiency, safety, usability, organisational feasibility and judicial considerations [53].
 
Literature
1.
go back to reference AGREE Collaboration. (2001). Appraisal of Guidelines Research and Evaluation. AGREE Instrument, London. AGREE Collaboration. (2001). Appraisal of Guidelines Research and Evaluation. AGREE Instrument, London.
4.
go back to reference Bauchner, H., & Simpson, S. (1998). Specific issues related to developing, disseminating, and implementing pediatric practice guidelines for physicians, patients, family, and other stakeholders. Health Services Research, 33(4), 1161–1177.PubMed Bauchner, H., & Simpson, S. (1998). Specific issues related to developing, disseminating, and implementing pediatric practice guidelines for physicians, patients, family, and other stakeholders. Health Services Research, 33(4), 1161–1177.PubMed
6.
7.
go back to reference Burgers, J. S., Fervers, B., Haugh, M., Brouwers, M., & Browman, G. (2004). International assessment of the quality of clinical practice guidelines in oncology using the appraisal of guidelines and research and evaluation instrument. Journal of Clinical Oncology, 22(10), 2000–2007. doi:10.1200/JCO.2004.06.157.PubMedCrossRef Burgers, J. S., Fervers, B., Haugh, M., Brouwers, M., & Browman, G. (2004). International assessment of the quality of clinical practice guidelines in oncology using the appraisal of guidelines and research and evaluation instrument. Journal of Clinical Oncology, 22(10), 2000–2007. doi:10.​1200/​JCO.​2004.​06.​157.PubMedCrossRef
8.
go back to reference Butow, P. N., Kazemi, J. N., Beeney, L. J., Griffin, A. M., & Dunn, M. (1996). When the diagnosis is cancer: Patient communication experiences and preferences. Cancer, 77(12), 2630–2637. doi:10.1002/(SICI)1097-0142(19960615)77:12<2630::AID-CNCR29>3.0.CO;2-S.PubMedCrossRef Butow, P. N., Kazemi, J. N., Beeney, L. J., Griffin, A. M., & Dunn, M. (1996). When the diagnosis is cancer: Patient communication experiences and preferences. Cancer, 77(12), 2630–2637. doi:10.1002/(SICI)1097-0142(19960615)77:12<2630::AID-CNCR29>3.0.CO;2-S.PubMedCrossRef
9.
go back to reference Caron-Flinterman, J. F. (2005). A new voice in science: Patient participation in decision-making on biomedical research. Vrije Universiteit, Amsterdam. Caron-Flinterman, J. F. (2005). A new voice in science: Patient participation in decision-making on biomedical research. Vrije Universiteit, Amsterdam.
10.
go back to reference Carter, A. O., Battista, R. N., Hodge, M. J., Lewis, S., & Bansinski, A. (1995). Report on activities and attitudes of organizations active in the clinical practice guideline field. Canadian Medical Association Journal, 153(7), 901–907.PubMed Carter, A. O., Battista, R. N., Hodge, M. J., Lewis, S., & Bansinski, A. (1995). Report on activities and attitudes of organizations active in the clinical practice guideline field. Canadian Medical Association Journal, 153(7), 901–907.PubMed
11.
go back to reference Cavelaars, E., Franx, G., Eland, A., & Geelen, K. (2002). Cliëntenparticipatie bij richtlijnontwikkeling. Utrecht: Trimbos Instituut. Cavelaars, E., Franx, G., Eland, A., & Geelen, K. (2002). Cliëntenparticipatie bij richtlijnontwikkeling. Utrecht: Trimbos Instituut.
13.
go back to reference De Tocqueville, A. (2000). Democracy in America. Indianapolis/Cambridge: Hackett Publishing Company Inc. De Tocqueville, A. (2000). Democracy in America. Indianapolis/Cambridge: Hackett Publishing Company Inc.
14.
go back to reference Duff, L. A., Kelson, M., Marriott, S., McIntosh, A., & Brown, S. (1996). Clinical guidelines: Involving patients and users of services. Journal of Clinical Effectiveness, 1(3), 104–112. Duff, L. A., Kelson, M., Marriott, S., McIntosh, A., & Brown, S. (1996). Clinical guidelines: Involving patients and users of services. Journal of Clinical Effectiveness, 1(3), 104–112.
15.
go back to reference Eccles, M., Clapp, Z., Grimshaw, J., Adams, P. C., Higgins, B., & Purves, I. (1996). Developing valid guidelines: Methodological and procedural issues from the North of England evidence based guideline development project. Quality in Health Care, 5, 44–50.PubMedCrossRef Eccles, M., Clapp, Z., Grimshaw, J., Adams, P. C., Higgins, B., & Purves, I. (1996). Developing valid guidelines: Methodological and procedural issues from the North of England evidence based guideline development project. Quality in Health Care, 5, 44–50.PubMedCrossRef
16.
go back to reference Field, M. J., & Lohr, K. N. (1992). Guidelines for clinical practice: From development to use. Washington DC: National Academy Press. Field, M. J., & Lohr, K. N. (1992). Guidelines for clinical practice: From development to use. Washington DC: National Academy Press.
17.
go back to reference Gandjour, A., Westenhofer, J., With, A., Fuchs, C., & Lauterbach, K. W. (2001). Development process of an evidence-based guideline for the treatment of obesity. International Journal for Quality in Health Care, 13(4), 325–332. doi:10.1093/intqhc/13.4.325.PubMedCrossRef Gandjour, A., Westenhofer, J., With, A., Fuchs, C., & Lauterbach, K. W. (2001). Development process of an evidence-based guideline for the treatment of obesity. International Journal for Quality in Health Care, 13(4), 325–332. doi:10.​1093/​intqhc/​13.​4.​325.PubMedCrossRef
18.
go back to reference Gastil, J., & Weiser, P. (2006). Jury service as an invitation to citizenship: Assessing the civic value of institutionalized deliberation. Policy Studies Journal: The Journal of the Policy Studies Organization, 34(4), 605–627. doi:10.1111/j.1541-0072.2006.00194.x. Gastil, J., & Weiser, P. (2006). Jury service as an invitation to citizenship: Assessing the civic value of institutionalized deliberation. Policy Studies Journal: The Journal of the Policy Studies Organization, 34(4), 605–627. doi:10.​1111/​j.​1541-0072.​2006.​00194.​x.
19.
go back to reference Gezondheidsraad. (2000). Van implementeren naar leren; het belang van tweerichtingsverkeer tussen praktijk en wetenschap in de gezondheidszorg. Den Haag: Gezondheidsraad, publication nr. 2000/18. Gezondheidsraad. (2000). Van implementeren naar leren; het belang van tweerichtingsverkeer tussen praktijk en wetenschap in de gezondheidszorg. Den Haag: Gezondheidsraad, publication nr. 2000/18.
20.
go back to reference Gilmore, A. (1993). Clinical practice guidelines: Weapons for patients, or shields for MDs? Canadian Medical Association Journal, 148(3), 429–431.PubMed Gilmore, A. (1993). Clinical practice guidelines: Weapons for patients, or shields for MDs? Canadian Medical Association Journal, 148(3), 429–431.PubMed
21.
go back to reference Goossensen, A., Van Der Veen, C., Van Der Linden, M., & Franx, G. (2005). Perspectief op behandeling van mensen met een angststoornis: Inbreng van patiënten bij richtlijnontwikkeling. Tijdschrift voor Sociale Gezondheidszorg, 83(3), 166–171. TSG. Goossensen, A., Van Der Veen, C., Van Der Linden, M., & Franx, G. (2005). Perspectief op behandeling van mensen met een angststoornis: Inbreng van patiënten bij richtlijnontwikkeling. Tijdschrift voor Sociale Gezondheidszorg, 83(3), 166–171. TSG.
22.
25.
go back to reference Jarret, L., & Patient Involvement Unit (PIU). (2004). A report on a study to evaluate patient/carer membership of the first NICE guideline development groups. National Institute for Clinical Excellence (NICE), National Health Service (NHS). Jarret, L., & Patient Involvement Unit (PIU). (2004). A report on a study to evaluate patient/carer membership of the first NICE guideline development groups. National Institute for Clinical Excellence (NICE), National Health Service (NHS).
26.
go back to reference Kelson, M. (2001). Patient involvement in clinical guideline development—where are we now? The Journal of Clinical Governance, 9, 169–174. Kelson, M. (2001). Patient involvement in clinical guideline development—where are we now? The Journal of Clinical Governance, 9, 169–174.
27.
go back to reference Lanza, M. L. (2000). Consumer contributions in developing clinical practice guidelines. Journal of Nursing Care Quality, 14(2), 33–40.PubMed Lanza, M. L. (2000). Consumer contributions in developing clinical practice guidelines. Journal of Nursing Care Quality, 14(2), 33–40.PubMed
28.
go back to reference Lui, K., Bajuk, B., Foster, K., & Gaston, A. (2006). Perinatal care at the borderlines of viability: A consensus statement base don a NSW and ACT consensus workshop. The Medical Journal of Australia, 15(9), 495–500. Lui, K., Bajuk, B., Foster, K., & Gaston, A. (2006). Perinatal care at the borderlines of viability: A consensus statement base don a NSW and ACT consensus workshop. The Medical Journal of Australia, 15(9), 495–500.
32.
go back to reference Nilsen, E. S., Myrhaug, H. T., Johansen, M., Oliver, S., & Oxman, A. D. (2006). Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (review), Cochrane Database of Systematic Reviews, Issue 3. Art. No.:CD004563. Nilsen, E. S., Myrhaug, H. T., Johansen, M., Oliver, S., & Oxman, A. D. (2006). Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material (review), Cochrane Database of Systematic Reviews, Issue 3. Art. No.:CD004563.
33.
go back to reference Owens, D. K. (1998). Patient preferences and the development of practice guidelines. Spine Update, 23(9), 1073–1079. Owens, D. K. (1998). Patient preferences and the development of practice guidelines. Spine Update, 23(9), 1073–1079.
40.
go back to reference Schofield, M. J., Walkom, S., & Sanson-Fisher, R. (1997). Patient-provider agreement on guidelines for preparation for breast cancer treatment. Behavioral Medicine (Washington, DC), 23, 36–45. Schofield, M. J., Walkom, S., & Sanson-Fisher, R. (1997). Patient-provider agreement on guidelines for preparation for breast cancer treatment. Behavioral Medicine (Washington, DC), 23, 36–45.
41.
go back to reference Schunemann, H. J., Fretheim, A., & Oxman, A. D. (2006). Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement. Health Research Policy and Systems, 4(22). Schunemann, H. J., Fretheim, A., & Oxman, A. D. (2006). Improving the use of research evidence in guideline development: 10. Integrating values and consumer involvement. Health Research Policy and Systems, 4(22).
42.
go back to reference Schunemann, H. J., Hill, S. R., Kakad, M., Vist, G. E., Bellamy, R., et al. (2007). Transparent development of the WHO rapid advice guidelines. PLoS Medicine, 4(5), 0786–0793.CrossRef Schunemann, H. J., Hill, S. R., Kakad, M., Vist, G. E., Bellamy, R., et al. (2007). Transparent development of the WHO rapid advice guidelines. PLoS Medicine, 4(5), 0786–0793.CrossRef
43.
go back to reference Sieders, R. (2006). Zwartboek cliëntenparticipatie bij de multidisciplinaire richtlijnen in de GGZ (Unpublished report). Sieders, R. (2006). Zwartboek cliëntenparticipatie bij de multidisciplinaire richtlijnen in de GGZ (Unpublished report).
44.
go back to reference Smallwood, R. A., & Lapsley, H. M. (1997). Clinical practice guidelines: To what end? The Medical Journal of Australia, 166, 592–595.PubMed Smallwood, R. A., & Lapsley, H. M. (1997). Clinical practice guidelines: To what end? The Medical Journal of Australia, 166, 592–595.PubMed
45.
go back to reference Smolders, M., & Braspenning, J. (2005). Depressie: behandel-en kwaliteitsdoelen. Centre for Quality of Care Research (WOK). St Radboud, Nijmegen: University Medical Centre. Smolders, M., & Braspenning, J. (2005). Depressie: behandel-en kwaliteitsdoelen. Centre for Quality of Care Research (WOK). St Radboud, Nijmegen: University Medical Centre.
47.
go back to reference Trappenburg, M. J. (2008). Genoeg is genoeg. Over gezondheidszorg en democratie. Amsterdam: Amsterdam University Press. Trappenburg, M. J. (2008). Genoeg is genoeg. Over gezondheidszorg en democratie. Amsterdam: Amsterdam University Press.
48.
go back to reference Tweede Kamer (parliamentary proceedings) (1995–1996). 24126(9). Tweede Kamer (parliamentary proceedings) (1995–1996). 24126(9).
49.
go back to reference Van Everdingen, J. J. E., Burgers, J. S., Assendelft, W. J. J., Swinkels, J. A., Van Barneveld, T. A., & Van De Klunder, J. L. M. (2004). Evidence-based richtlijnontwikkeling: een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum. Van Everdingen, J. J. E., Burgers, J. S., Assendelft, W. J. J., Swinkels, J. A., Van Barneveld, T. A., & Van De Klunder, J. L. M. (2004). Evidence-based richtlijnontwikkeling: een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum.
50.
go back to reference Van Veenendaal, H., Franx, G. C., Grol, M. H., Van Vuuren, J., Versluijs, M. M., & Dekhuijzen, P. N. R. (2004). Patiëntenparticipatie in richtlijnontwikkeling. In J. J. E. Van Everdingen, et al. (Eds.), Evidence-based richtlijnontwikkeling. Een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum. Van Veenendaal, H., Franx, G. C., Grol, M. H., Van Vuuren, J., Versluijs, M. M., & Dekhuijzen, P. N. R. (2004). Patiëntenparticipatie in richtlijnontwikkeling. In J. J. E. Van Everdingen, et al. (Eds.), Evidence-based richtlijnontwikkeling. Een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum.
51.
go back to reference Van Wersch, A., & Eccles, M. (2001). 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, 10, 10–16. doi:10.1136/qhc.10.1.10.CrossRef Van Wersch, A., & Eccles, M. (2001). 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, 10, 10–16. doi:10.​1136/​qhc.​10.​1.​10.CrossRef
52.
go back to reference Van Wersch, S. F. M., & Van Den Akker, P. A. M. (2005). Cliëntenparticipatie bij multidisciplinaire richtlijnontwikkeling in de GGZ: Ervaringskennis is geen kennis!? IVA. Utrecht: Trimbos Instituut. Van Wersch, S. F. M., & Van Den Akker, P. A. M. (2005). Cliëntenparticipatie bij multidisciplinaire richtlijnontwikkeling in de GGZ: Ervaringskennis is geen kennis!? IVA. Utrecht: Trimbos Instituut.
53.
go back to reference Wiersma, T. J., & Burgers, J. S. (2004). Formuleren van aanbevelingen. In J. J. E. Van Everdingen, et al. (Eds.), Evidence-based richtlijnontwikkeling. Een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum. Wiersma, T. J., & Burgers, J. S. (2004). Formuleren van aanbevelingen. In J. J. E. Van Everdingen, et al. (Eds.), Evidence-based richtlijnontwikkeling. Een leidraad voor de praktijk. Houten: Bohn Stafleu Van Loghum.
54.
go back to reference Williamson, C. (1998). The rise of doctor-patient workings groups. British Medical Journal, 317, 1374–1377.PubMed Williamson, C. (1998). The rise of doctor-patient workings groups. British Medical Journal, 317, 1374–1377.PubMed
55.
go back to reference Wright, J., Harrison, S., McGeorge, M., Patterson, C., Russel, D., et al. (2006). Improving the management and regerral of patients with transient ischaemic attacks: A change strategy for a health community. Quality & Safety in Health Care, 15, 9–12. doi:10.1136/qshc.2005.014704.CrossRef Wright, J., Harrison, S., McGeorge, M., Patterson, C., Russel, D., et al. (2006). Improving the management and regerral of patients with transient ischaemic attacks: A change strategy for a health community. Quality & Safety in Health Care, 15, 9–12. doi:10.​1136/​qshc.​2005.​014704.CrossRef
Metadata
Title
Reconsidering Patient Participation in Guideline Development
Authors
Hester M. van de Bovenkamp
Margo J. Trappenburg
Publication date
01-09-2009
Publisher
Springer US
Published in
Health Care Analysis / Issue 3/2009
Print ISSN: 1065-3058
Electronic ISSN: 1573-3394
DOI
https://doi.org/10.1007/s10728-008-0099-3

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