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Published in: The Patient - Patient-Centered Outcomes Research 3/2017

01-06-2017 | Current Opinion

Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges

Authors: Ahmed Rashid, Victoria Thomas, Toni Shaw, Gillian Leng

Published in: The Patient - Patient-Centered Outcomes Research | Issue 3/2017

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Abstract

Clinical guidelines and health technology assessments are valuable instruments to improve the quality of healthcare delivery and aim to integrate the best available evidence with real-world, expert context. The role of patient and public involvement in their development has grown in recent decades, and this article considers the international literature exploring aspects of this participation, including the integration of experiential and scientific knowledge, recruitment strategies, models of involvement, stages of involvement, and methods of evaluation. These developments have been underpinned by the parallel rise of public involvement and evidence-based medicine as important concepts in health policy. Improving the recruitment of guideline group chairs, widening evidence reviews to include patient preference studies, adapting guidance presentation to highlight patient preference points and providing clearer instructions on how patient organisations can submit their intelligence are emerging proposals that may further enhance patient and public involvement in their processes.
Literature
1.
go back to reference Woolf SH, Grol R, Hutchinson A, Eccles M, Grimshaw J. Potential benefits, limitations, and harms of clinical guidelines. BMJ Br Med J. 1999;318(7182):527–30.CrossRef Woolf SH, Grol R, Hutchinson A, Eccles M, Grimshaw J. Potential benefits, limitations, and harms of clinical guidelines. BMJ Br Med J. 1999;318(7182):527–30.CrossRef
2.
go back to reference Grol R, Wensing M, Eccles M. Improving patient care: the implementation of change in clinical practice. New York: Elsevier Butterworth Heinemann; 2005. Grol R, Wensing M, Eccles M. Improving patient care: the implementation of change in clinical practice. New York: Elsevier Butterworth Heinemann; 2005.
3.
go back to reference Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS ONE. 2011;6(6):e20476.CrossRefPubMedPubMedCentral Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS ONE. 2011;6(6):e20476.CrossRefPubMedPubMedCentral
5.
go back to reference Feder G, Eccles M, Grol R, Griffiths C, Grimshaw J. Clinical guidelines: using clinical guidelines. BMJ. 1999;318(7185):728.3. Feder G, Eccles M, Grol R, Griffiths C, Grimshaw J. Clinical guidelines: using clinical guidelines. BMJ. 1999;318(7185):728.3.
6.
go back to reference Cavazza M, Jommi C. Stakeholders involvement by HTA organisations: why is so different? Health Policy. 2012;105(2–3):236–45.CrossRefPubMed Cavazza M, Jommi C. Stakeholders involvement by HTA organisations: why is so different? Health Policy. 2012;105(2–3):236–45.CrossRefPubMed
7.
go back to reference Shaneyfelt TM, Mayo-Smith MF, Rothwangl J. Are guidelines following guidelines? The methodological quality of clinical practice guidelines in the peer-reviewed medical literature. JAMA. 1999;281(20):1900–5.CrossRefPubMed Shaneyfelt TM, Mayo-Smith MF, Rothwangl J. Are guidelines following guidelines? The methodological quality of clinical practice guidelines in the peer-reviewed medical literature. JAMA. 1999;281(20):1900–5.CrossRefPubMed
8.
go back to reference Vlayen J, Aertgeerts B, Hannes K, Sermeus W, Ramaekers D. A systematic review of appraisal tools for clinical practice guidelines: multiple similarities and one common deficit. Int J Qual Health Care. 2005;17:235–42.CrossRefPubMed Vlayen J, Aertgeerts B, Hannes K, Sermeus W, Ramaekers D. A systematic review of appraisal tools for clinical practice guidelines: multiple similarities and one common deficit. Int J Qual Health Care. 2005;17:235–42.CrossRefPubMed
9.
go back to reference Knai C, Brusamento S, Legido-Quigley H, et al. Systematic review of the methodological quality of clinical guideline development for the management of chronic disease in Europe. Health Policy. 2012;107(2–3):157–67.CrossRefPubMed Knai C, Brusamento S, Legido-Quigley H, et al. Systematic review of the methodological quality of clinical guideline development for the management of chronic disease in Europe. Health Policy. 2012;107(2–3):157–67.CrossRefPubMed
10.
go back to reference Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325:1263–7.CrossRefPubMedPubMedCentral Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, et al. Systematic review of involving patients in the planning and development of health care. BMJ. 2002;325:1263–7.CrossRefPubMedPubMedCentral
11.
go back to reference Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61:213–36.CrossRefPubMed Boote J, Telford R, Cooper C. Consumer involvement in health research: a review and research agenda. Health Policy. 2002;61:213–36.CrossRefPubMed
12.
go back to reference 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. Cochrane Database Syst Rev. 2006;3(3):CD004563. 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. Cochrane Database Syst Rev. 2006;3(3):CD004563.
13.
go back to reference Gagnon MP, Desmartis M, Lepage-Savary D, Gagnon J, St-Pierre M, Rhainds M, et al. Introducing patients’ and the public’s perspectives to health technology assessment: a systematic review of international experiences. Int J Technol Assess Health Care. 2011;27(1):31–42.CrossRefPubMed Gagnon MP, Desmartis M, Lepage-Savary D, Gagnon J, St-Pierre M, Rhainds M, et al. Introducing patients’ and the public’s perspectives to health technology assessment: a systematic review of international experiences. Int J Technol Assess Health Care. 2011;27(1):31–42.CrossRefPubMed
14.
go back to reference Hailey D, Werkö S, Bakri R, Cameron A, Göhlen B, Myles S, et al. Involvement of consumers in health technology assessment activities by Inahta agencies. Int J Technol Assess Health Care. 2013;29(1):79–83.CrossRefPubMed Hailey D, Werkö S, Bakri R, Cameron A, Göhlen B, Myles S, et al. Involvement of consumers in health technology assessment activities by Inahta agencies. Int J Technol Assess Health Care. 2013;29(1):79–83.CrossRefPubMed
15.
go back to reference Kelson M, Akl EA, Bastian H, Cluzeau F, Curtis JR, Guyatt G, et al. Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report. Proc Am Thorac Soc. 2012;9(5):262–8.CrossRefPubMed Kelson M, Akl EA, Bastian H, Cluzeau F, Curtis JR, Guyatt G, et al. Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report. Proc Am Thorac Soc. 2012;9(5):262–8.CrossRefPubMed
16.
go back to reference Quennell P. Getting their say, or getting their way? Has participation strengthened the patient “voice” in the National Institute for Clinical Excellence? J Manag Med. 2001;15(3):202–19.CrossRefPubMed Quennell P. Getting their say, or getting their way? Has participation strengthened the patient “voice” in the National Institute for Clinical Excellence? J Manag Med. 2001;15(3):202–19.CrossRefPubMed
17.
go back to reference Bastian H. Raising the standard: practice guidelines and consumer participation. Int J Qual Health Care. 1996;8(5):485–90.CrossRefPubMed Bastian H. Raising the standard: practice guidelines and consumer participation. Int J Qual Health Care. 1996;8(5):485–90.CrossRefPubMed
18.
go back to reference Roman BR, Feingold J. Patient-centered guideline development best practices can improve the quality and impact of guidelines. Otolaryngol Head Neck Surg. 2014;151(4):530–2.CrossRefPubMed Roman BR, Feingold J. Patient-centered guideline development best practices can improve the quality and impact of guidelines. Otolaryngol Head Neck Surg. 2014;151(4):530–2.CrossRefPubMed
19.
go back to reference Tong A, Lopez-Vargas P, Howell M, Phoon R, Johnson D, Campbell D, et al. Consumer involvement in topic and outcome selection in the development of clinical practice guidelines. Health Expect. 2012;15(4):410–23.CrossRefPubMed Tong A, Lopez-Vargas P, Howell M, Phoon R, Johnson D, Campbell D, et al. Consumer involvement in topic and outcome selection in the development of clinical practice guidelines. Health Expect. 2012;15(4):410–23.CrossRefPubMed
20.
go back to reference Barham L. Public and patient involvement at the UK National Institute for Health and Clinical Excellence. Patient. 2011;4(1):1–10.CrossRefPubMed Barham L. Public and patient involvement at the UK National Institute for Health and Clinical Excellence. Patient. 2011;4(1):1–10.CrossRefPubMed
21.
go back to reference Díaz Del Campo P, Gracia J, Blasco JA, Andradas E. A strategy for patient involvement in clinical practice guidelines: methodological approaches. BMJ Qual Saf. 2011;20(9):779–84.CrossRefPubMed Díaz Del Campo P, Gracia J, Blasco JA, Andradas E. A strategy for patient involvement in clinical practice guidelines: methodological approaches. BMJ Qual Saf. 2011;20(9):779–84.CrossRefPubMed
22.
23.
go back to reference Kelson M. The NICE patient involvement unit. Evid Based Healthc Public Health. 2005;9(4):304–7.CrossRef Kelson M. The NICE patient involvement unit. Evid Based Healthc Public Health. 2005;9(4):304–7.CrossRef
24.
go back to reference Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA. 2008;300(4):436–8.CrossRefPubMed Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA. 2008;300(4):436–8.CrossRefPubMed
25.
go back to reference Bridges JF, Jones C. Patient-based health technology assessment: a vision of the future. Int J Technol Assess Health Care. 2007;23(1):30–5.CrossRefPubMed Bridges JF, Jones C. Patient-based health technology assessment: a vision of the future. Int J Technol Assess Health Care. 2007;23(1):30–5.CrossRefPubMed
26.
go back to reference Kelson M. Patient involvement in clinical guideline development–where are we now? J Clin Govern. 2001;9(4):169–74. Kelson M. Patient involvement in clinical guideline development–where are we now? J Clin Govern. 2001;9(4):169–74.
27.
go back to reference van Wersch A, Eccles M. Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme. Qual Health Care. 2001;10(1):10–6.CrossRefPubMedPubMedCentral van Wersch A, Eccles M. Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme. Qual Health Care. 2001;10(1):10–6.CrossRefPubMedPubMedCentral
28.
go back to reference van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development. Health Care Anal. 2009;17(3):198–216.CrossRefPubMed van de Bovenkamp HM, Trappenburg MJ. Reconsidering patient participation in guideline development. Health Care Anal. 2009;17(3):198–216.CrossRefPubMed
29.
go back to reference Harding E, Pettinari CJ, Brown D, Hayward M, Taylor C. Service user involvement in clinical guideline development and implementation: learning from mental health service users in the UK. Int Rev Psychiatry. 2011;23(4):352–7.CrossRefPubMed Harding E, Pettinari CJ, Brown D, Hayward M, Taylor C. Service user involvement in clinical guideline development and implementation: learning from mental health service users in the UK. Int Rev Psychiatry. 2011;23(4):352–7.CrossRefPubMed
30.
go back to reference Légaré F, Boivin A, van der Weijden T, Pakenham C, Burgers J, Légaré J, et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Med Decis Making. 2011;31(6):E45–74. Légaré F, Boivin A, van der Weijden T, Pakenham C, Burgers J, Légaré J, et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Med Decis Making. 2011;31(6):E45–74.
31.
go back to reference Whitty JA. An international survey of the public engagement practices of health technology assessment organizations. Value Health. 2013;16(1):155–63.CrossRefPubMed Whitty JA. An international survey of the public engagement practices of health technology assessment organizations. Value Health. 2013;16(1):155–63.CrossRefPubMed
32.
go back to reference Pohontsch NJ, Herzberg H, Joos S, Welti F, Scherer M, Blozik E. The professional perspective on patient involvement in the development of quality indicators: a qualitative analysis using the example of chronic heart failure in the German health care setting. Patient Prefer Adher. 2015;22(9):151–9. Pohontsch NJ, Herzberg H, Joos S, Welti F, Scherer M, Blozik E. The professional perspective on patient involvement in the development of quality indicators: a qualitative analysis using the example of chronic heart failure in the German health care setting. Patient Prefer Adher. 2015;22(9):151–9.
33.
go back to reference van de Bovenkamp HM, Zuiderent-Jerak T. An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings. Health Expect. 2013. doi:10.1111/hex.12067. van de Bovenkamp HM, Zuiderent-Jerak T. An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings. Health Expect. 2013. doi:10.​1111/​hex.​12067.
35.
go back to reference van der Ham AJ, Shields LS, van der Horst R, Broerse JE, van Tulder MW. Facilitators and barriers to service user involvement in mental health guidelines: lessons from the Netherlands. Adm Policy Ment Health. 2014;41(6):712–23.CrossRefPubMed van der Ham AJ, Shields LS, van der Horst R, Broerse JE, van Tulder MW. Facilitators and barriers to service user involvement in mental health guidelines: lessons from the Netherlands. Adm Policy Ment Health. 2014;41(6):712–23.CrossRefPubMed
36.
go back to reference Lopes E, Street J, Carter D, Merlin T. Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia. Health Expect. 2015. doi:10.1111/hex.12356. Lopes E, Street J, Carter D, Merlin T. Involving patients in health technology funding decisions: stakeholder perspectives on processes used in Australia. Health Expect. 2015. doi:10.​1111/​hex.​12356.
37.
go back to reference Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman 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(3):334–40.CrossRefPubMed Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman 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(3):334–40.CrossRefPubMed
38.
go back to reference Boivin A, Currie K, Fervers B, Gracia J, James M, Marshall C, et al. Patient and public involvement in clinical guidelines: international experiences and future perspec Qual Saf Health Care. 2010;19(5):e22. Boivin A, Currie K, Fervers B, Gracia J, James M, Marshall C, et al. Patient and public involvement in clinical guidelines: international experiences and future perspec Qual Saf Health Care. 2010;19(5):e22.
39.
40.
go back to reference Quennell P. Getting a word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence. Clin Govern Int J. 2003;8(1):39–45.CrossRef Quennell P. Getting a word in edgeways? Patient group participation in the appraisal process of the National Institute for Clinical Excellence. Clin Govern Int J. 2003;8(1):39–45.CrossRef
41.
go back to reference Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310(23):2503–4.CrossRefPubMed Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310(23):2503–4.CrossRefPubMed
42.
go back to reference Boivin A, Green J, van der Meulen J, Légaré F, Nolte E. Why consider patients’ preferences? A discourse analysis of clinical practice guideline developers. Med Care. 2009;47(8):908–15.CrossRefPubMed Boivin A, Green J, van der Meulen J, Légaré F, Nolte E. Why consider patients’ preferences? A discourse analysis of clinical practice guideline developers. Med Care. 2009;47(8):908–15.CrossRefPubMed
43.
go back to reference Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. “It all depends”: conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70(10):1518–26.CrossRefPubMed Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. “It all depends”: conceptualizing public involvement in the context of health technology assessment agencies. Soc Sci Med. 2010;70(10):1518–26.CrossRefPubMed
44.
go back to reference Bombard Y, Abelson J, Simeonov D, Gauvin FP. Eliciting ethical and social values in health technology assessment: a participatory approach. Soc Sci Med. 2011;73(1):135–44.CrossRefPubMed Bombard Y, Abelson J, Simeonov D, Gauvin FP. Eliciting ethical and social values in health technology assessment: a participatory approach. Soc Sci Med. 2011;73(1):135–44.CrossRefPubMed
45.
go back to reference Clarke J, Chuter A. The BASHH public panel: climbing the ladder of involvement. Sex Transm Infect. 2014;90(2):83.CrossRefPubMed Clarke J, Chuter A. The BASHH public panel: climbing the ladder of involvement. Sex Transm Infect. 2014;90(2):83.CrossRefPubMed
46.
go back to reference Arnstein SR. A ladder of citizen participation. J Am Inst Plan. 1969;35(4):216–24.CrossRef Arnstein SR. A ladder of citizen participation. J Am Inst Plan. 1969;35(4):216–24.CrossRef
47.
go back to reference Syrett K. Deconstructing deliberation in the appraisal of medical technologies: NICEly does it? Mod Law Rev. 2006;69(6):869–94.CrossRef Syrett K. Deconstructing deliberation in the appraisal of medical technologies: NICEly does it? Mod Law Rev. 2006;69(6):869–94.CrossRef
48.
go back to reference Abelson J, Bombard Y, Gauvin FP, Simeonov D, Boesveld S. Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care. 2013;29(3):282–9.CrossRefPubMed Abelson J, Bombard Y, Gauvin FP, Simeonov D, Boesveld S. Assessing the impacts of citizen deliberations on the health technology process. Int J Technol Assess Health Care. 2013;29(3):282–9.CrossRefPubMed
49.
go back to reference Pittens CA, Vonk Noordegraaf A, van Veen SC, Anema JR, Huirne JA, Broerse JE. The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands. Health Expect. 2013. doi:10.1111/hex.12121. Pittens CA, Vonk Noordegraaf A, van Veen SC, Anema JR, Huirne JA, Broerse JE. The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands. Health Expect. 2013. doi:10.​1111/​hex.​12121.
50.
51.
go back to reference Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27(1):43–9.CrossRefPubMed Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: public involvement and the health technology assessment community. Int J Technol Assess Health Care. 2011;27(1):43–9.CrossRefPubMed
52.
go back to reference Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci. 2014;20(9):24.CrossRef Boivin A, Lehoux P, Lacombe R, Burgers J, Grol R. Involving patients in setting priorities for healthcare improvement: a cluster randomized trial. Implement Sci. 2014;20(9):24.CrossRef
53.
go back to reference Kötter T, Schaefer FA, Scherer M, Blozik E. Involving patients in quality indicator development—a systematic review. Patient Prefer Adher. 2013;7:259–68. Kötter T, Schaefer FA, Scherer M, Blozik E. Involving patients in quality indicator development—a systematic review. Patient Prefer Adher. 2013;7:259–68.
54.
go back to reference Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25(8):626–32.CrossRefPubMedPubMedCentral Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Qual Saf. 2016;25(8):626–32.CrossRefPubMedPubMedCentral
Metadata
Title
Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges
Authors
Ahmed Rashid
Victoria Thomas
Toni Shaw
Gillian Leng
Publication date
01-06-2017
Publisher
Springer International Publishing
Published in
The Patient - Patient-Centered Outcomes Research / Issue 3/2017
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI
https://doi.org/10.1007/s40271-016-0206-8

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