ArticleAJOB empirical bioethics2016
Patients' Views Concerning Research on Medical Practices: Implications for Consent.
Article in AJOB empirical bioethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers.
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The trial behind it
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Who cites it
16 citing papers in PubMed.
- A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent.Clinical trials (London, England) · 2017Trial
- Empirical research related to the ethics of pragmatic clinical trials: A scoping review.Learning health systems · 2026Article
- Ethics challenges in sharing data from pragmatic clinical trials.Clinical trials (London, England) · 2022Article
- Incentives and payments in pragmatic clinical trials: Scientific, ethical, and policy considerations.Clinical trials (London, England) · 2021Article
- Citizens, Research Ethics Committee Members and Researchers' Attitude Toward Information and Consent for the Secondary Use of Health Data: Implications for Research Within Learning Health Systems.Journal of empirical research on human research ethics : JERHRE · 2021Article
- Patient Partner Perspectives Regarding Ethically and Clinically Important Aspects of Trial Design in Pragmatic Cluster Randomized Trials for Hemodialysis.Canadian journal of kidney health and disease · 2021Article
- Informed consent within a learning health system: A scoping review.Learning health systems · 2020Article
- Ethical Issues in the Design and Conduct of Pragmatic Cluster Randomized Trials in Hemodialysis Care: An Interview Study With Key Stakeholders.Canadian journal of kidney health and disease · 2020Article
- Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems.BMC medical ethics · 2019Article
- Stakeholder views regarding ethical issues in the design and conduct of pragmatic trials: study protocol.BMC medical ethics · 2018Article
- Stakeholder perspectives regarding alternate approaches to informed consent for comparative effectiveness research.Learning health systems · 2018Article
- Comparison of Approaches for Notification and Authorization in Pragmatic Clinical Research Evaluating Commonly Used Medical Practices.Medical care · 2017Article
- Pragmatic clinical trials embedded in healthcare systems: generalizable lessons from the NIH Collaboratory.BMC medical research methodology · 2017Article
- Physicians' perspectives regarding pragmatic clinical trials.Journal of comparative effectiveness research · 2016Article
- Article
- Research Use of Electronic Health Records: Patients' Views on Alternative Approaches to Permission.AJOB empirical bioethicsArticle
Corrections and comments
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Authors and funding
8 authors.
Funding
Abstract
backgroundComparative effectiveness research (CER) and pragmatic clinical trials commonly test interventions that are in routine use and pose minimal incremental risk or burdens to patients who participate in this research. The objective of this study was to elicit the range of patients' views and opinions regarding a variety of different types of research on usual medical practices, especially notification and authorization for them.
methodsWe conducted twelve focus groups with adults in five U.S. cities-six focus groups addressing CER ("CER groups") and six groups addressing research involving hospital operations and clinician interventions ("Operations groups"). Participants discussed hypothetical research studies and potential methods of notifying patients and obtaining their authorization to participate. Group discussions were recorded, transcribed, and coded to identify patients' views related to research on standard medical practice.
resultsA total of ninety six people participated. Twelve key themes emerged from participants' discussions of the hypothetical research studies; these themes were then grouped into four general categories: clinical care; notification and authorization; communication; and conduct and design of research. The desire to be actively notified and asked was more prominent with regard to CER studies than with regard to Operations studies.
conclusionsOur data suggest that effective policy and guidance will involve balancing different patients' interests and potentially different sets of interests for different types of research studies on usual medical practices.
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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.