ArticleAMIA ... Annual Symposium proceedings. AMIA Symposium2013
Patient informed governance of distributed research networks: results and discussion from six patient focus groups.
Article in AMIA ... Annual Symposium proceedings. AMIA Symposium, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient and Public Willingness to Share Personal Health Data for Third-Party or Secondary Uses: Systematic Review.Journal of medical Internet research · 2024Pooled it
- The Implementation of Decision Aids During Medical Consultations for Lung Cancer Patients: A Focus Group Within I3LUNG Project.Journal of cancer education : the official journal of the American Association for Cancer Education · 2025Article
- Article
- Patients' and Members of the Public's Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review.Journal of medical Internet research · 2023Article
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- Evaluation of the Privacy Risks of Personal Health Identifiers and Quasi-Identifiers in a Distributed Research Network: Development and Validation Study.JMIR medical informatics · 2021Article
- Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.Journal of participatory medicine · 2020Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Privacy Policy and Technology in Biomedical Data Science.Annual review of biomedical data science · 2018Article
- Patient preferences toward an interactive e-consent application for research using electronic health records.Journal of the American Medical Informatics Association : JAMIA · 2018Article
- iCONCUR: informed consent for clinical data and bio-sample use for research.Journal of the American Medical Informatics Association : JAMIA · 2017Article
- Patient knowledge and information-seeking about personalized cancer therapy.International journal of medical informatics · 2016Article
- Comparison of consumers' views on electronic data sharing for healthcare and research.Journal of the American Medical Informatics Association : JAMIA · 2015Article
- Sharing my health data: a survey of data sharing preferences of healthy individuals.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2014Article
- Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.AJOB empirical bioethicsArticle
- Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders.Journal of the American Medical Informatics Association : JAMIAArticle
- pSCANNER: patient-centered Scalable National Network for Effectiveness Research.Journal of the American Medical Informatics Association : JAMIAArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
Understanding how to govern emerging distributed research networks is essential to their success. Distributed research networks aggregate patient medical data from many institutions leaving data within the local provider security system. While much is known about patients' views on secondary medical research, little is known about their views on governance of research networks. We conducted six focus groups with patients from three medical centers across the U.S. to understand their perspectives on privacy, consent, and ethical concerns of sharing their data as part of research networks. Participants positively endorsed sharing their health data with these networks believing that doing so could advance healthcare knowledge. However, patients expressed several concerns regarding security and broader ethical issues such as commercialism, public benefit, and social responsibility. We suggest that network governance guidelines move beyond strict technical requirements and address wider socio-ethical concerns by fully including patients in governance processes.
Indexed as
Identifiers
24551383PMC3900224What 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.