A Survey of Individuals’ Willingness to Share Real-World Data Post-Mortem with Researchers

Background Posthumous data use policy within the broader scope of navigating post-mortem data privacy is a procedurally complex landscape for those engaged in data collection and sharing, and data-driven health research. Objective To help address some of this complexity by exploring patterns in individuals’ willingness to donate data with health researchers after death and developing practical recommendations. Methods An electronic survey was conducted in April 2021 among adults (≥18 years of age) registered in ResearchMatch ([www.researchmatch.org][1]), a national health research registry. Descriptive and multinomial logistic regression analyses were conducted at a 95% confidence level to determine the association between willingness to donate data after death overall and across each demographic category (education level, age range, duration of using online medical websites, annual frequency of getting ill) and based on the overall quantity at which individuals expressed willingness to donate data (some, all, none) with researchers. Results Of 399 responses, most participants were willing to donate health data (electronic medical record data [67%], prescription history data [63%], genetic data [54%], and fitness tracker data [53%]) after death. We identified that individuals were more likely to donate some data after death (versus no data) if they had longer duration of using online medical websites (relative risk ratio = 1.22, p<0.05, 95% CI: 1.01 to 1.48). No additional significant findings were observed between willingness to donate all, some, or none of their data after death and other demographic factors. Conclusions There are opportunities to enhance practices to engage patients in health systems’ online medical websites as one potential mechanism to encourage or inspire individuals in posthumous data donation for health research purposes. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The author(s) received no specific funding for this work. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Not Applicable The details of the IRB/oversight body that provided approval or exemption for the research described are given below: ResearchMatch is a registry and collaborative project that is maintained at Vanderbilt University and overseen by the Vanderbilt University Institutional Review Board. The present study was reviewed and approved by the Ohio University Institutional Review Board under protocol #20-E-457. ResearchMatch participants’ completion of the survey implied their consent to engage in the survey. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Not Applicable I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Not Applicable I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Not Applicable Data may be made available upon request and according to institutional and ethical guidelines and standards and applicable laws. [1]: http://www.researchmatch.org