ArticleQualitative health research2024
From a Single Voice to Diversity: Reframing 'Representation' in Patient Engagement.
Article in Qualitative health research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- From community engagement to lived experience leadership: a systematic review of HIV services among men who have sex with men.Health promotion international · 2026Pooled it
- Expertise or representation: What gives people with lived experience authority and legitimacy in involvement in research?Research involvement and engagement · 2026Article
- Frameworks for Action: A Scoping Review of Organisational Patient Engagement Models in Healthcare.The International journal of health planning and management · 2026Article
- 'Working Together to Meet in the Middle'. A Qualitative Descriptive Study of Power Dynamics in Lived Experience and Family Engagement in Mental Health and Substance Use Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Constructs, Predictive Factors and Measures: Insights From the Mental Health in the Moment (MHIM) Co-Production Panel.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- A meta-review of patient engagement, shared decision-making, and factors influencing equity-deserving populations' participation in clinical trials.Research involvement and engagement · 2026Review
- Assessing unstated assumptions of patient and public involvement in palliative care with story completion and typology analysis.BMC palliative care · 2026Article
- Mixed identity is an identity: embracing the people involved in research partnerships.BMJ open · 2025Review
- Strengthening health literacy research through consumer engagement: a qualitative analysis of building and maintaining partnership.Health promotion international · 2025Article
- Consulting people who use cannabis to plan a regulatory trial on non-medical cannabis sales in pharmacies.Research involvement and engagement · 2025Article
- Doing community involvement care-fully: using an ethic of care to guide involvement in research on women's health after pregnancy complications and loss.Research involvement and engagement · 2025Article
- Article
- Coproducing an Ecological Momentary Assessment Measurement Burst Mental Health Study With Young People: The MHIM Coproduction Protocol.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Improving access and quality of primary healthcare through women and adolescents' user committees: A mixed-methods case study in Kinshasa, Democratic Republic of the Congo.The International journal of health planning and management · 2025Article
- Involving Knowledge Users in Health Services Research: Collective Reflections and Learning From a National Evaluation of Recurrent Miscarriage Services.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- 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
- Discussing the gaps in the science and practice of lived experience engagement in mental health and substance use research: results of knowledge mobilization activities.Research involvement and engagement · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers.
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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.