ArticleJournal of medical ethics2016
Research led by participants: a new social contract for a new kind of research.
Article in Journal of medical ethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers.
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
38 citing papers in PubMed, 98 citations in OpenAlex.
- Questions for more insightful and useful analyses of barriers and facilitators to public involvement and engagement in health research: a critical narrative review.Research involvement and engagement · 2026Review
- Patient- and Public-Led Research - How Is It Defined and Practiced: A Scoping Review.Journal of patient experience · 2026Article
- Co-designing a wiki-based community knowledge management system for personal science.Royal Society open science · 2024Article
- Talking Ethics Early in Health Data Public Private Partnerships.Journal of business ethics : JBE · 2024Article
- Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: an ethnographic and interview study.BioSocieties · 2023Article
- Reimagining health services provision for neglected groups: The "personalization from below" phenomenon.Frontiers in sociology · 2023Article
- Implementing the Co-Immune Open Innovation Program to Address Vaccination Hesitancy and Access to Vaccines: Retrospective Study.Journal of participatory medicine · 2022Article
- Differences of expected intervention effects between participant-led and facilitator-led preventive care services in Japan.Hong Kong journal of occupational therapy : HKJOT · 2021Article
- Using an Individual-Centered Approach to Gain Insights From Wearable Data in the Quantified Flu Platform: Netnography Study.Journal of medical Internet research · 2021Article
- Empowering grassroots innovation to accelerate biomedical research.PLoS biology · 2021Article
- Patient-partner engagement at the Centre de recherche du CHUS in the Province of Québec, Canada: from an intuitive methodology to outreach after three years of implementation.Research involvement and engagement · 2021Article
- Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Science and engineering ethics · 2021Article
- Patient-Led Research Collaborative: embedding patients in the Long COVID narrative.Pain reports · 2021Review
- "Hunting Down My Son's Killer": New Roles of Patients in Treatment Discovery and Ethical Uncertainty.Journal of bioethical inquiry · 2020Article
- Return of Results in Participant-Driven Research: Learning from Transformative Research Models.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.Journal of medical ethics · 2019Article
- Open Humans: A platform for participant-centered research and personal data exploration.GigaScience · 2019Review
- Free-Living Humans Cross Cardiovascular Disease Risk Categories Due to Daily Rhythms in Cholesterol and Triglycerides.Journal of circadian rhythms · 2019Article
- Article
- Sharing individual participant data from clinical studies: a cross-sectional online survey among Italian patient and citizen groups.BMJ open · 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
14 authors at 9 institutions in 4 countries.
Funding
Abstract
In recent years, there have been prominent calls for a new social contract that accords a more central role to citizens in health research. Typically, this has been understood as citizens and patients having a greater voice and role within the standard research enterprise. Beyond this, however, it is important that the renegotiated contract specifically addresses the oversight of a new, path-breaking approach to health research: participant-led research. In light of the momentum behind participant-led research and its potential to advance health knowledge by challenging and complementing traditional research, it is vital for all stakeholders to work together in securing the conditions that will enable it to flourish.
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.