ArticleBMC medical ethics2021
Achieving inclusive research priority-setting: what do people with lived experience and the public think is essential?
Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 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
26 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Methodological procedures for priority setting mental health research: a systematic review summarising the methods, designs and frameworks involved with priority setting.Health research policy and systems · 2023Pooled it
- Cancer early detection research priorities in some underrepresented communities: a commentary of the learnings from a community priority setting project.Research involvement and engagement · 2026Article
- From establishment to network consolidation: Registrant engagement and collaborative development in the international Consortium for Research in Eating Disorders (CoRe-ED).Journal of eating disorders · 2026Article
- The GALENOS approach to triangulating evidence: a structured approach for integrating information from human and animal studies.BMC medical research methodology · 2026Article
- Methodological review: Prioritizing a future research agenda for overcoming immunization implementation barriers in Pakistan.Public health in practice (Oxford, England) · 2026Article
- Participatory action research to align Health and Demographic Surveillance System (HDSS) priorities with community needs in Uttar Pradesh, India.Primary health care research & development · 2026Article
- Approaches for community intervention and research priority setting to reduce health inequalities: a scoping review.Journal of public health (Oxford, England) · 2026Article
- Patient Perspectives on Trust in Artificial Intelligence-Powered Tools in Prostate Cancer Diagnostics.Qualitative health research · 2026Article
- "Being treated as the expert:" A blueprint for a community advisory board approach to elevate the voice of people with living experience with substance use in academic research.Journal of clinical and translational science · 2026Article
- "CARING in Action": A Knowledge Mobilization Project on Co-Creating Evidence-Based Communication Training in Chronic Pain Care for Healthcare Professionals.Canadian journal of pain = Revue canadienne de la douleur · 2026Article
- Needs and experiences of families after a sudden unexplained death in childhood: a qualitative study.BMJ paediatrics open · 2025Article
- Establishment of an international Consortium for Research in Eating Disorders (CoRe-ED): Analysis of early-stage participant involvement and expectations.Journal of eating disorders · 2025Article
- A case against purity: prioritizing translational polysubstance use research.Current opinion in psychiatry · 2025Review
- What Are the Research Priorities for the Dyslexia Community in the United Kingdom and How Do They Align With Previous Research Funding?Dyslexia (Chichester, England) · 2025Article
- Inclusive research with individuals with Down syndrome at risk for dementia.Dementia & neuropsychologia · 2025Review
- Overdose response centering inequity and diversity study: a protocol for assessing the population-level and equity impact of the emergency medical services system changes using critical race theory.Frontiers in public health · 2025Article
- A decolonial and liberation lens to social justice research: Upholding promises for diverse, inclusive, and equitable psychological science.The American psychologist · 2025Article
- Beyond the 5-year recovery mark: Perspectives of researchers with lived and living experience on public engagement and discourse.The International journal on drug policy · 2024Article
- Wonderings to research questions: Engaging patients in long COVID research prioritization within a learning health system.Learning health systems · 2024Article
- Is the Invisibility of Dementia a Super-Power or a Curse? A Reflection on the SUNshiners' Questionnaire into the Public Understanding of Dementia as an Invisible Disability: A User-Led Research Project.International journal of environmental research and public health · 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
1 author.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEngagement of people with lived experience and members of the public is an ethically and scientifically essential component of health research. Authentic engagement means they are involved as full partners in research projects. Yet engagement as partnership is uncommon in practice, especially during priority-setting for research projects. What is needed for agenda-setting to be shared by researchers and people with lived experience and/or members of the public (or organisations representing them)? At present, little ethical guidance exists on this matter, particularly that which has been informed by the perspectives of people with lived experience and members of the public. This article provides initial evidence about what they think are essential foundations and barriers to shared decision-making in health research priority-setting and health research more broadly.
methodsAn exploratory, qualitative study was conducted in 2019. 22 semi-structured interviews were performed with key informants from the UK and Australia.
resultsThree main types of foundations were thought to be essential to have in place before shared decision-making can occur in health research priority-setting: relational, environmental, and personal. Collectively, the three types of foundations addressed many (but not all) of the barriers to power sharing identified by interviewees.
conclusionsBased on study findings, suggestions are made for what researchers, engagement practitioners, research institutions, and funders should do in their policy and practice to support meaningful engagement. Finally, key international research ethics guidelines on community engagement are considered in light of study findings.
Indexed as
Identifiers
What OpenQuestion holds
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.