ArticleBMC medical informatics and decision making2019
Patients' willingness to share digital health and non-health data for research: a cross-sectional study.
Article in BMC medical informatics and decision making, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05880147 (App-based Consent for Participation in Pediatric Clinical Research), which is not on this map. Cited by 41 papers, 3 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.
App-based Consent for Participation in Pediatric Clinical Research: a Feasibility Study
Who cites it
41 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Exploring perspectives of interest-holders on the use of health and genomic data from deceased participants in research: An updated systematic review.Journal of genetic counseling · 2026Pooled 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
- Measuring the willingness to share personal health information: a systematic review.Frontiers in public health · 2023Pooled it
- Consumer Willingness to Share Personal Digital Information for Health-Related Uses.JAMA network open · 2022Trial
- Willingness to Share Smartwatch-Generated Health Data Among a Sample of Adults in Riyadh, Saudi Arabia.Healthcare (Basel, Switzerland) · 2026Article
- Willingness to Share Internet Use Data for Research on Early Disease Detection: Cross-Sectional Survey.Journal of medical Internet research · 2026Article
- Characteristics of Participants Who Consented to Share Data with a Public Health Registry After an Environmental Disaster.International journal of environmental research and public health · 2025Article
- Acceptability of Active and Passive Data Collection Methods for Mobile Health Research: Cross-Sectional Survey of an Online Adult Sample in the United States.JMIR formative research · 2025Article
- Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review.Interactive journal of medical research · 2025Review
- Summarizing Online Patient Conversations Using Generative Language Models: Experimental and Comparative Study.JMIR medical informatics · 2025Article
- Patterns of willingness to share health data with key stakeholders in US consumers: a latent class analysis.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Article
- The Impact of Data Control and Delayed Discounting on the Public's Willingness to Share Different Types of Health Care Data: Empirical Study.JMIR medical informatics · 2025Article
- Participant Contributions to Person-Generated Health Data Research Using Mobile Devices: Scoping Review.Journal of medical Internet research · 2025Article
- Advancing digital sensing in mental health research.NPJ digital medicine · 2024Review
- Caregiver and Youth Characteristics That Influence Trust in Digital Health Platforms in Pediatric Care: Mixed Methods Study.Journal of medical Internet research · 2024Article
- A study on user willingness to participate in an adverse drug event information sharing system.BMC public health · 2024Article
- The challenges of research data management in cardiovascular science: a DGK and DZHK position paper-executive summary.Clinical research in cardiology : official journal of the German Cardiac Society · 2024Review
- Assessment of ownership of smart devices and the acceptability of digital health data sharing.NPJ digital 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
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatients generate large amounts of digital data through devices, social media applications, and other online activities. Little is known about patients' perception of the data they generate online and its relatedness to health, their willingness to share data for research, and their preferences regarding data use.
methodsPatients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were asked about their views on data types' health relatedness. Factor analysis was used to identify the structure in patients' perceptions of willingness to share different digital data, and their health relatedness.
resultsOf 595 patients approached 206 agreed to participate, of whom 104 agreed to share at least one types of digital data immediately, and 78% agreed to donate at least one data type after death. EMR, wearable, and Google search histories (80%) had the highest percentage of reported health relatedness. 72% participants wanted to know the results of any analysis of their shared data, and half wanted their healthcare provider to know.
conclusionPatients in this study were willing to share a considerable amount of personal digital data with health researchers. They also recognize that digital data from many sources reveal information about their health. This study opens up a discussion around reconsidering US privacy protections for health information to reflect current opinions and to include their relatedness to health.
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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.