ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2013
Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness.
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 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
33 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Financial relationships between patient and consumer representatives and the health industry: A systematic review.Health expectations : an international journal of public participation in health care and health policy · 2020Pooled it
- Research engagement of rare disease patient advocacy groups in Poland: between participation and constrained co-production.BMC health services research · 2026Article
- Patient organizations involvement in healthcare: a rapid review and conceptual framework.Globalization and health · 2026Review
- "We are ambassadors, we are advocates": rare disease patient advocacy groups as knowledge brokers across health and social systems-a qualitative study from Poland.Frontiers in public health · 2026Article
- Commercial influences on patient and public involvement: a renewed call for research and action.Health promotion international · 2024Article
- Ethical challenges in contemporary psychiatry: an overview and an appraisal of possible strategies and research needs.World psychiatry : official journal of the World Psychiatric Association (WPA) · 2024Article
- Perspectives of European Patient Advocacy Groups on Volunteer Registries and Vaccine Trials: VACCELERATE Survey Study.JMIR public health and surveillance · 2024Article
- Article
- Direct-to-Consumer Recruitment Methods via Traditional and Social Media to Aid in Research Accrual for Clinical Trials for Rare Diseases: Comparative Analysis Study.Journal of medical Internet research · 2023Article
- Scaling up health technology assessment capacities in selected African countries - A conceivable route ahead.International journal of technology assessment in health care · 2023Article
- Aspiring to Reasonableness in Accelerated Approval: Anticipating and Avoiding the Next Aducanumab.Drugs & aging · 2022Article
- The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review.Orphanet journal of rare diseases · 2022Review
- The social licence for data-intensive health research: towards co-creation, public value and trust.BMC medical ethics · 2021Review
- Article
- Governing Personalized Health: A Scoping Review.Frontiers in genetics · 2021Article
- Psychiatrization of Society: A Conceptual Framework and Call for Transdisciplinary Research.Frontiers in psychiatry · 2021Review
- Article
- Lessons from Corporate Influence in the Opioid Epidemic: Toward a Norm of Separation.Journal of bioethical inquiry · 2020Article
- Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective.Journal of bioethical inquiry · 2020Article
- When patient advocacy organizations meet industry: a novel approach to dealing with financial conflicts of interest.BMC medical ethics · 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
1 author.
Funding
Abstract
Patient advocacy organizations (PAOs) advocate for increased research funding and policy changes and provide services to patients and their families. Given their credibility and political clout, PAOs are often successful in changing policies, increasing research funding, and increasing public awareness of medical conditions and the problems of their constituents. In order to advance their missions, PAOs accept funding, frequently from pharmaceutical firms. Industry funding can help PAOs advance their goals but can also create conflicts of interest (COI). Research indicates that bias may occur, even among well-meaning professionals, when people and organizations have financial COI. Industry funding may therefore influence PAOs to act in ways that favor the interests of their donors, which may increase the risk of harm to patients. This article extends the analysis developed in the Institute of Medicine report, Conflicts of Interest in Medical Research, Education, and Practice, and applies the analysis to understand PAOs and their relationships with industry. It argues that the preferred goal of institutional COI policies should not be to promote trust, but to promote trustworthiness and appropriately placed trust.
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.