ArticleHealth expectations : an international journal of public participation in health care and health policy2021
Patient representatives: Crucial members of health-care working groups facing an uncertain role and conflicting expectations. A qualitative study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
5 citing papers in PubMed, 6 citations in OpenAlex.
- Evaluation of the Implementation and Contribution of Patient Partners on a Steering Committee at a University Hospital in the Province of Québec, Canada.Healthcare (Basel, Switzerland) · 2026Article
- Patient involvement in the development of clinical practice guidelines in Germany-A meta-research study.Clinical and public health guidelines · 2025Article
- The Perspectives of Healthcare Professionals and Managers on Patient Involvement in Care Pathway Development: A Discourse Analysis.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Patient representatives: Crucial members of health-care working groups facing an uncertain role and conflicting expectations. A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Evaluating the impact of a patient-representative model of support for women affected by cervical cancer.Women's health (London, England)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient representatives (PRs) have been involved for decades in health-care development, and their participation is increasingly sought in health-care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse.
objectiveTo explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement.
designQualitative design using semi-structured interviews analysed by content analysis. SETTING AND
participantsInterviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden.
resultsMost participants considered the PR role important but mentioned several problems. PRs' contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present.
conclusionThis study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care. PATIENT OR PUBLIC CONTRIBUTION: PRs were information givers in data collection.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.