ArticleMedical care2018
A Tale of 2 Constituencies: Exploring Patient and Clinician Perspectives in the Age of Big Data.
Article in Medical care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed.
- Returning Individual-Level Urgent or Emergent Research Results to Participants: The Project Baseline Health Study Experience.American journal of medicine open · 2025Article
- Public Involvement and Engagement in Big Data Research: Scoping Review.Journal of participatory medicine · 2024Article
- 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
- Patient engagement in a national research network: barriers, facilitators, and impacts.Research involvement and engagement · 2023Article
- Patients' knowledge, preferences, and perspectives about data protection and data control: an exploratory survey.Frontiers in pharmacology · 2023Article
- Patients' and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Journal of medical ethics · 2022Review
- Exploring public concerns for sharing and governance of personal health information: a focus group study.JAMIA open · 2021Article
- PCORnet® 2020: current state, accomplishments, and future directions.Journal of clinical epidemiology · 2021Article
- Achieving Value in Population Health Big Data.Journal of general internal medicine · 2020Article
- Developing pathways for community-led research with big data: a content analysis of stakeholder interviews.Health research policy and systems · 2020Article
- Network Engagement in Action: Stakeholder Engagement Activities to Enhance Patient-centeredness of Research.Medical care · 2020Article
- Engaging patients, clinicians, and the community in a Clinical Data Research Network: Lessons learned from the CAPriCORN CDRN.Learning health systems · 2019Article
- Understanding What Information Is Valued By Research Participants, And Why.Health affairs (Project Hope) · 2019Article
- Effective Engagement Requires Trust and Being Trustworthy.Medical care · 2018Article
- Engagement in PCORnet Research Networks.Medical care · 2018Article
- Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.AJOB empirical bioethicsArticle
- Data professionals' attitudes on data privacy, sharing, and consent in healthcare and research.Digital healthArticle
- Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.AJOB empirical bioethicsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundPatient and clinician stakeholders are inadequately engaged in key aspects of research, particularly regarding use of Big Data to study and improve patient-centered outcomes. Little is known about the attitudes, interests, and concerns of stakeholders regarding such data. RESEARCH
designThe New York City Clinical Data Research Network (NYC-CDRN), a collaboration of research, clinical, and community leaders built a deidentified dataset containing electronic health records from millions of New Yorkers. Guided by a patient-clinician advisory board, we developed a question guide to explore patient and clinician experiences and ideas about research using large datasets. Trained facilitators led discussions during preexisting patient, community, and clinician group meetings. The research team coded meeting notes and identified themes.
resultsFully 272 individuals participated in 19 listening sessions (139 patients/advocates, 133 clinicians) at 6 medical centers with diverse NYC communities: 76% were female and 63% were nonwhite. Clinicians and patients agreed on all major themes including the central role of clinicians in introducing patients to research and the need for public campaigns to inform stakeholders about Big Data. Stakeholders were interested in using granular data to compare the care and clinical outcomes of their neighborhoods with others across NYC, but were also concerned that data could not truly be deidentified.
conclusionsClinicians and patients agree on potential benefits of stakeholder-engaged Big Data research and provided suggestions for further research and building stakeholder research capacity. This evaluation demonstrated the potential of brief meetings with existing patient and clinical groups to explore barriers and facilitators to patient and clinician engagement.
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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.