ArticlePloS one2018
Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research.
Article in PloS one, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.Health expectations : an international journal of public participation in health care and health policy · 2019Pooled it
- 'Making little ethical decisions all the time': examining an ethical framework for consumer and community involvement in research, a co-produced ethnographic study.BMC medical ethics · 2025Article
- Engaging Community Reviewers: The Geriatric Emergency Care Applied Research (2.0)-Advancing Dementia Care Network Approach.Journal of the American Geriatrics Society · 2025Article
- A Proposal for Addressing Bioethical Concerns Along the 10-Step Framework for Community Engagement.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Consensus on Adolescent and Young Adult HIV Research Consent in Low- and Middle-Income Countries.JAMA network open · 2025Article
- Using Participatory Implementation Science to Advance Health Equity.Annual review of public health · 2024Review
- Key Maternity Care Stakeholders' Views on Midwives' Professional Autonomy.Healthcare (Basel, Switzerland) · 2023Article
- Trauma-informed patient and public-engaged research: Development and evaluation of an online training programme.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Institutionalizing Community-engaged Translational Science in an Academic Institution: A Community Stakeholder-Driven Process.Progress in community health partnerships : research, education, and action · 2023Article
- RADx-UP Coordination and Data Collection: An Infrastructure for COVID-19 Testing Disparities Research.American journal of public health · 2022Article
- Increasing access and uptake of SARS-CoV-2 at-home tests using a community-engaged approach.Preventive medicine reports · 2022Article
- A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships.Health research policy and systems · 2022Article
- Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set.Journal of the National Cancer Institute · 2022Article
- ESOT Consensus Platform for Organ Transplantation: Setting the Stage for a Rigorous, Regularly Updated Development Process.Transplant international : official journal of the European Society for Organ Transplantation · 2022Article
- Co-Designing Health Service Evaluation Tools That Foreground First Nation Worldviews for Better Mental Health and Wellbeing Outcomes.International journal of environmental research and public health · 2021Article
- Citizen Consultation on Problematic Usage of the Internet: Ethical Considerations and Empirical Insights From Six Countries.Frontiers in public health · 2021Article
- Article
- Addressing Ethical Challenges in US-Based HIV Phylogenetic Research.The Journal of infectious diseases · 2020Article
- The Roses Ocean and Human Health Chair: A New Way to Engage the Public in Oceans and Human Health Challenges.International journal of environmental research and public health · 2020Article
- Ethical Challenges and Lessons Learned from Qualitative Research with Low-Income African American Women Living with HIV in the South.Journal of health care for the poor and underserved · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship.
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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.