ArticleAnnals of internal medicine2014
The importance of purpose: moving beyond consent in the societal use of personal health information.
Article in Annals of internal medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses 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, 2 syntheses or guidelines 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
- Ethical issues in biomedical research using electronic health records: a systematic review.Medicine, health care, and philosophy · 2021Pooled it
- All of Us participant perspectives on the return of value in research.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Perspectives of Youths on the Ethical Use of Artificial Intelligence in Health Care Research and Clinical Care.JAMA network open · 2023Article
- Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information.JAMA network open · 2023Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Real-world data and the patient perspective: the PROmise of social media?BMC medicine · 2019Article
- Between Scylla and Charybdis: Charting the Wicked Problem of Reusing Health Data for Clinical Research Informatics.Yearbook of medical informatics · 2018Review
- Where Did Informed Consent for Research Come From?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2018Article
- A survey of practices for the use of electronic health records to support research recruitment.Journal of clinical and translational science · 2017Article
- Perspectives of Patients With Cancer on the Ethics of Rapid-Learning Health Systems.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2017Article
- Using Digital Technology to Engage and Communicate with Patients: A Survey of Patient Attitudes.Journal of general internal medicine · 2016Article
- Acquisition, Analysis, and Sharing of Data in 2015 and Beyond: A Survey of the Landscape: A Conference Report From the American Heart Association Data Summit 2015.Journal of the American Heart Association · 2015Article
- Privacy and confidentiality in pragmatic clinical trials.Clinical trials (London, England) · 2015Article
- Pragmatic Randomized Trials Without Standard Informed Consent?: A National Survey.Annals of internal medicine · 2015Article
- Mining the social mediome.Trends in molecular medicine · 2015Article
- Article
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
backgroundAdoption of electronic health record systems has increased the availability of patient-level electronic health information.
objectiveTo examine public support for secondary uses of electronic health information under different consent arrangements.
designNational experimental survey to examine perceptions of uses of electronic health information according to patient consent (obtained vs. not obtained), use (research vs. marketing), and framing of the findings (abstract description without results vs. specific results).
settingNationally representative survey.
participants3064 African American, Hispanic, and non-Hispanic white persons (response rate, 65%). MEASUREMENTS: Appropriateness of health information use described in vignettes on a scale of 1 (not at all appropriate) to 10 (very appropriate).
resultsMean ratings ranged from a low of 3.81 for a marketing use when consent was not obtained and specific results were presented to a high of 7.06 for a research use when consent was obtained and specific results were presented. Participants rated scenarios in which consent was obtained as more appropriate than when consent was not obtained (difference, 1.01 [95% CI, 0.69 to 1.34]; P<0.001). Participants rated scenarios in which the use was marketing as less appropriate than when the use was research (difference, -2.03 [CI, -2.27 to -1.78]; P<0.001). Unconsented research uses were rated as more appropriate than consented marketing uses (5.65 vs. 4.52; difference, 1.13 [CI, 0.87 to 1.39]). LIMITATIONS: Participants rated hypothetical scenarios. Results could be vulnerable to nonresponse bias despite the high response rate.
conclusionAlthough approaches to health information sharing emphasize consent, public opinion also emphasizes purpose, which suggests a need to focus more attention on the social value of information use. PRIMARY FUNDING SOURCE: National Human Genome Research Institute.
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.