ArticleJournal of general internal medicine2020
Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement.
Article in Journal of general internal medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 34 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
34 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Barriers and Enablers of Primary Healthcare Professionals in Health Research Engagement: A Systematic Review of Qualitative Studies.Nursing & health sciences · 2025Pooled it
- Bridging Research, Policy, and Practice: Advancing Evidence-Informed Approaches for Dementia Care and Prevention: an expert review by the Health Policy Professional Interest Area from ISTAART.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Barriers and Facilitators to Interest-Holder Engagement in Health Guideline Development: A Qualitative Evidence Synthesis.Campbell systematic reviews · 2026Review
- Setting the rules of engagement: a qualitative study of challenges and enablers of engaged research in a South African emergency care system.Research involvement and engagement · 2026Article
- Implementation Strategies for Strengthening Community and Stakeholder Engagement in Clinical and Translational Pilot Studies.Journal of participatory research methods · 2026Article
- Introducing a Series of Reviews Assessing Engagement in Evidence Syntheses.Cochrane evidence synthesis and methods · 2025Article
- Evidence adaptation and tailored implementation of family bereavement support in specialised palliative care: A multi-method study.International journal of nursing studies advances · 2025Article
- The Evolution of Patient Empowerment and Its Impact on Health Care's Future.Journal of medical Internet research · 2025Article
- Enhancing health equity considerations in guidelines: health equity extension of the GIN-McMaster Guideline Development Checklist.EClinicalMedicine · 2025Article
- Patient engagement for the development of equity-focused health technology assessment (HTA) recommendations: a case study of two Canadian HTA organizations.International journal of technology assessment in health care · 2025Article
- The technical expert/clinical user/patient panel (TECUPP): centering patient and family perspectives in patient-reported measure development.Research involvement and engagement · 2025Article
- Measuring and Demonstrating the Value of Patient Engagement Across the Medicines Lifecycle: A Patient Engagement Impact Measurement Framework.The patient · 2025Article
- A review of reported stakeholder engagement in early-stage translational research.Journal of clinical and translational science · 2025Article
- Extending participant feedback beyond clinical studies: A modular system designed to connect researchers and participants.Journal of clinical and translational science · 2025Article
- From 'publish or perish' to 'publish with purpose': perspectives from young adults with lived and living experience on transforming academic publishing in patient-oriented research.Research involvement and engagement · 2024Article
- Guidance for engagement in health guideline development: A scoping review.Campbell systematic reviews · 2024Article
- 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
- Patient engagement in quality of life research.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Article
- Article
- Patient engagement in hematopoietic stem cell transplantation and cell therapy: a survey by the EBMT patient engagement task force & transplantation complications working party.Bone marrow transplantation · 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
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
With the increase in patient and consumer activism through the late twentieth century and into this century, patient roles in research evolved into a new model of research engagement, with patients serving as active advisors and co-leading or leading clinical research. By requiring active engagement of patients and other stakeholders, several government research funders have advanced this model, particularly in Canada, the United States (US), United Kingdom (UK), and Australia. A consortium of individuals from these countries formed a Multi-Stakeholder Engagement (MuSE) consortium to examine critical issues in engaged research, establish consensus on definitions, and provide guidance for the field, beginning with an overview of how to involve stakeholders in health research (Concannon et al. J Gen Intern Med. 2019;34(3):458-463) and continuing here with an examination of definitions of research engagement. The political and advocacy roots of engaged research are reflected in definitions. Engagement is conceptualized with reference to research project goals, from informing specific clinical decisions to informing health-system level decisions. Political and cultural differences across countries are evident. Some of these government funders focus on empirical rather than ethical rationales. In countries with centralized health technology assessment, the link between societal values and engaged research is explicit. Ethical rationales for engagement are explicit in most of the published literature on research engagement. Harmonization of definitions is recommended so that research engagement elements, methods, and outcomes and impacts can be clearly examined and understood, and so that the field of research engagement can proceed from a clear conceptual foundation. Specific recommendations for terminology definitions are provided. Placing engaged research on a continuum from specific clinical decisions to more global public and social justice concerns clarifies the type of engaged research, supports appropriate comparisons, and improves the rigor of engaged research methods. The results help identify knowledge gaps in this growing field.
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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.