ArticleQuality in health care : QHC2001
Involvement of consumers in the development of evidence based clinical guidelines: practical experiences from the North of England evidence based guideline development programme.
Article in Quality in health care : QHC, 2001. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 2 of them syntheses that pooled it.
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Who cites it
36 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Consumers' and health providers' views and perceptions of partnering to improve health services design, delivery and evaluation: a co-produced qualitative evidence synthesis.The Cochrane database of systematic reviews · 2023Pooled it
- Patient and service user engagement in research: a systematic review and synthesized framework.Health expectations : an international journal of public participation in health care and health policy · 2015Pooled it
- Impact of patient involvement on clinical practice guideline development: a parallel group study.Implementation science : IS · 2018Trial
- Trial
- Barriers and Facilitators to Interest-Holder Engagement in Health Guideline Development: A Qualitative Evidence Synthesis.Campbell systematic reviews · 2026Review
- [Involvement of representatives of patients and relatives in guideline processes : S3 guidelines on psychosocial therapies for severe mental illnesses breaks new ground].Der Nervenarzt · 2025Article
- Enhancing patient and public contribution in health outcome selection during clinical guideline development: an ethnographic study.BMC health services research · 2022Article
- Evaluating the Acceptability, Feasibility, and Outcomes of Two Methods Involving Patients With Disability in Developing Clinical Guidelines: Crossover Pilot Study.Journal of participatory medicine · 2021Article
- Online Modified-Delphi: a Potential Method for Continuous Patient Engagement Across Stages of Clinical Practice Guideline Development.Journal of general internal medicine · 2021Article
- People With Lived Experience at the Centre of Canadian Stroke Best Practice Recommendations: A Model for Guideline Developers.Journal of patient experience · 2020Article
- Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Patient and Public Involvement in the Development of Healthcare Guidance: An Overview of Current Methods and Future Challenges.The patient · 2017Review
- An evidence-based, point-of-care tool to guide completion of asthma action plans in practice.The European respiratory journal · 2017Review
- Framework for enhancing clinical practice guidelines through continuous patient engagement.Health expectations : an international journal of public participation in health care and health policy · 2017Article
- Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies.Research involvement and engagement · 2017Article
- Recommendations for patient engagement in guideline development panels: A qualitative focus group study of guideline-naïve patients.PloS one · 2017Article
- Monitoring and evaluation of patient involvement in clinical practice guideline development: lessons from the Multidisciplinary Guideline for Employment and Severe Mental Illness, the Netherlands.Health expectations : an international journal of public participation in health care and health policy · 2016Article
- The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings.Health expectations : an international journal of public participation in health care and health policy · 2015Article
- Incorporating patient preferences in the management of multiple long-term conditions: is this a role for clinical practice guidelines?Journal of comorbidity · 2015Article
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2 authors.
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No grant is acknowledged in the PubMed record.
Abstract
backgroundConsumer involvement in clinical guidelines has long been advocated although there are few empirical accounts of attempts to do so. It is therefore not surprising that there is a lack of clarity about how and when to involve consumers and what to expect from them within the process of guideline development.
methodsThe North of England evidence based guideline development programme has used four different methods of consumer involvement.
resultsWhen individual patients were included in a guideline development group they contributed infrequently and had problems with the use of technical language. Although they contributed most in discussions of patient education, their contributions were not subsequently acted on. In a "one off" meeting with a group of patients there were again reported problems with medical terminology and the group were most interested in sections on patient education and self management. However, their understanding of the use of scientific evidence in order to contribute to a more cost effective health care remained unclear. In a workshop it was possible to explain the technical elements of guideline development to patients who could then engage with such a process and make relevant suggestions as a consequence. However, this was relatively resource intensive. A patient advocate within a guideline development group felt confidence to speak, was used to having discussions with health professionals, and was familiar with the medical terminology.
conclusionsConsumers should be involved in all stages of guideline development. While this is possible, it is not straightforward. There is no one right way to accomplish this and there is a clear need for further work on how best to achieve it.
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