Patients' willingness to share digital health and non-health data for research: a cross-sectional study.
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ABSTRACT:
SUBMITTER: Seltzer E
PROVIDER: S-EPMC6686530 | biostudies-other | 2019 Aug
REPOSITORIES: biostudies-other
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Patients' willingness to share digital health and non-health data for research: a cross-sectional study.
Seltzer Emily E Goldshear Jesse J Guntuku Sharath Chandra SC Grande Dave D Asch David A DA Klinger Elissa V EV Merchant Raina M RM
BMC medical informatics and decision making 20190808 1
<h4>Background</h4>Patients 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.<h4>Methods</h4>Patients at an academic urban emergency department were asked if they would donate any of 19 different types of data to health researchers and were as ...[more]
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Project description:BackgroundDigital health research repositories propose sharing longitudinal streams of health records and personal sensing data between multiple projects and researchers. Motivated by the prospect of personalizing patient care (precision medicine), these initiatives demand broad public acceptance and large numbers of data contributors, both of which are challenging.ObjectiveThis study investigates public attitudes toward possibly contributing to digital health research repositories to identify factors for their acceptance and to inform future developments.MethodsA cross-sectional online survey was conducted from March 2020 to December 2020. Because of the funded project scope and a multicenter collaboration, study recruitment targeted young adults in Denmark and Brazil, allowing an analysis of the differences between 2 very contrasting national contexts. Through closed-ended questions, the survey examined participants' willingness to share different data types, data access preferences, reasons for concern, and motivations to contribute. The survey also collected information about participants' demographics, level of interest in health topics, previous participation in health research, awareness of examples of existing research data repositories, and current attitudes about digital health research repositories. Data analysis consisted of descriptive frequency measures and statistical inferences (bivariate associations and logistic regressions).ResultsThe sample comprises 1017 respondents living in Brazil (1017/1600, 63.56%) and 583 in Denmark (583/1600, 36.44%). The demographics do not differ substantially between participants of these countries. The majority is aged between 18 and 27 years (933/1600, 58.31%), is highly educated (992/1600, 62.00%), uses smartphones (1562/1600, 97.63%), and is in good health (1407/1600, 87.94%). The analysis shows a vast majority were very motivated by helping future patients (1366/1600, 85.38%) and researchers (1253/1600, 78.31%), yet very concerned about unethical projects (1219/1600, 76.19%), profit making without consent (1096/1600, 68.50%), and cyberattacks (1055/1600, 65.94%). Participants' willingness to share data is lower when sharing personal sensing data, such as the content of calls and texts (1206/1600, 75.38%), in contrast to more traditional health research information. Only 13.44% (215/1600) find it desirable to grant data access to private companies, and most would like to stay informed about which projects use their data (1334/1600, 83.38%) and control future data access (1181/1600, 73.81%). Findings indicate that favorable attitudes toward digital health research repositories are related to a personal interest in health topics (odds ratio [OR] 1.49, 95% CI 1.10-2.02; P=.01), previous participation in health research studies (OR 1.70, 95% CI 1.24-2.35; P=.001), and awareness of examples of research repositories (OR 2.78, 95% CI 1.83-4.38; P<.001).ConclusionsThis study reveals essential factors for acceptance and willingness to share personal data with digital health research repositories. Implications include the importance of being more transparent about the goals and beneficiaries of research projects using and re-using data from repositories, providing participants with greater autonomy for choosing who gets access to which parts of their data, and raising public awareness of the benefits of data sharing for research. In addition, future developments should engage with and reduce risks for those unwilling to participate.
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Project description:Japan's government aims to promote the linkage of medical records, including medical genomic testing data and personal health records (PHRs), via cloud computing (the cloud). However, linking national medical records and using them for health care research can be controversial. Additionally, many ethical issues with using cloud networks with health care and genome data have been noted. However, no research has yet explored the Japanese public's opinions about their PHRs, including genome data, being shared for health care research or the use of the cloud for storing and analyzing such data. Therefore, we conducted a survey in March 2021 to clarify the public's attitudes toward sharing their PHRs, including genome data and using the cloud for health care research. We analyzed data to experimentally create digital health basic literacy scores (BLSs). Our results showed that the Japanese public had concerns about data sharing that overlapped with structural cloud computing issues. The effect of incentives on changes in participants' willingness to share data (WTSD) was limited. Instead, there could be a correlation between WTSD and BLSs. Finally, we argue that it is vital to consider not only researchers but also research participants as value cocreators in health care research conducted through the cloud to overcome both parties' vulnerability.
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Project description:The growing smartphone penetration and the integration of smartphones into people's everyday practices offer researchers opportunities to augment survey measurement with smartphone-sensor measurement or to replace self-reports. Potential benefits include lower measurement error, a widening of research questions, collection of in situ data, and a lowered respondent burden. However, privacy considerations and other concerns may lead to nonparticipation. To date, little is known about the mechanisms of willingness to share sensor data by the general population, and no evidence is available concerning the stability of willingness. The present study focuses on survey respondents' willingness to share data collected using smartphone sensors (GPS, camera, and wearables) in a probability-based online panel of the general population of the Netherlands. A randomized experiment varied study sponsor, framing of the request, the emphasis on control over the data collection process, and assurance of privacy and confidentiality. Respondents were asked repeatedly about their willingness to share the data collected using smartphone sensors, with varying periods before the second request. Willingness to participate in sensor-based data collection varied by the type of sensor, study sponsor, order of the request, respondent's familiarity with the device, previous experience with participating in research involving smartphone sensors, and privacy concerns. Willingness increased when respondents were asked repeatedly and varied by sensor and task. The timing of the repeated request, one month or six months after the initial request, did not have a significant effect on willingness.
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Project description:BackgroundAdvances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors.ObjectiveThis study aimed to assess healthy non-Hispanic white mothers' attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers.MethodsThis cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers' willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous.ResultsThe results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers' health care provider status, their motivation, and their privacy concerns. Mothers' concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers' motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99).ConclusionsThe findings of this study suggest that mothers' privacy concerns affect their decisions to share sensitive data. However, mothers' access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data.
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