Connected Health User Willingness to Share Personal Health Data: Questionnaire Study.
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ABSTRACT:
SUBMITTER: Karampela M
PROVIDER: S-EPMC6906622 | biostudies-literature | 2019 Nov
REPOSITORIES: biostudies-literature
Publications
Connected Health User Willingness to Share Personal Health Data: Questionnaire Study.
Karampela Maria M Ouhbi Sofia S Isomursu Minna M
Journal of medical Internet research 20191127 11
<h4>Background</h4>Connected health has created opportunities for leveraging health data to deliver preventive and personalized health care services. The increasing number of personal devices and advances in measurement technologies contribute to an exponential growth in digital health data. The practices for sharing data across the health ecosystem are evolving as there are more opportunities for using such data to deliver responsive health services.<h4>Objective</h4>The objective of this study ...[more]
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Project description:BackgroundInternational advances in information communication, eHealth, and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and the emergence of COVID-19, critical exploration of public willingness to share personal health data remains limited, particularly for third-party or secondary uses.ObjectiveThis systematic review aims to explore factors that affect public willingness to share personal health data for third-party or secondary uses.MethodsA systematic search of 6 databases (MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and SocINDEX) was conducted with review findings analyzed using inductive-thematic analysis and synthesized using a narrative approach.ResultsOf the 13,949 papers identified, 135 were included. Factors most commonly identified as a barrier to data sharing from a public perspective included data privacy, security, and management concerns. Other factors found to influence willingness to share personal health data included the type of data being collected (ie, perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritization, and ability to directly impact patient care; trust in the data user, as well as in associated processes, often established through individual choice and control over what data are shared with whom, when, and for how long, supported by appropriate models of dynamic consent; the presence of a feedback loop; and clearly articulated benefits or issue relevance including valued incentivization and compensation at both an individual and collective or societal level.ConclusionsThere is general, yet conditional public support for sharing personal health data for third-party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and for how long are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritize individual or collective benefits over and above commercial gain. Failure to understand, design, and refine data sharing approaches in response to changeable patient preferences will only jeopardize the tangible benefits of data sharing practices being fully realized.
| S-EPMC10951832 | biostudies-literature
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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Project description:BACKGROUND: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. METHODS: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 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. RESULTS:Of 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. CONCLUSION:Patients 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.
| S-EPMC6686530 | biostudies-other
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.
| S-EPMC10060394 | biostudies-literature
Project description:BACKGROUND:Personal health record (PHR) systems let individuals utilize their own health information to maintain and improve quality of life. Using PHRs is expected to support self-management in patients with lifestyle-related diseases. OBJECTIVE:The aim of this study was to identify predictors of the willingness to use PHRs among patients who are prescribed medications for lifestyle-related diseases. METHODS:We recruited pharmacy patrons, aged 20 years or older, who had received at least one medication indicated for hypertension, dyslipidemia, or diabetes. Participants completed self-administered questionnaires regarding their previous diseases, awareness of health care, experience in using PHRs, willingness to use PHRs, and barriers to using PHRs. Data were analyzed using multivariate logistic regression models. RESULTS:Of the 3708 subjects meeting eligibility criteria, 2307 replies (62.22%) were collected. While only 174 (7.54%) participants had previous PHR experience, 853 (36.97%) expressed willingness to use PHRs. In the multivariate analysis, considering exercise to be important for health management (odds ratio [OR] 1.57, 95% CI 1.12-2.21; P=.009), obtaining medical information from books or magazines (OR 1.23, 95% CI 0.96-1.59; P=.10), and obtaining medical information from the internet (OR 1.45, 95% CI 1.13-1.87; P=.004) were newly identified predictors. These were in addition to known predictors, such as being employed, owning information terminals, and previous PHR experience. CONCLUSIONS:Patients who have an active and positive attitude toward health seem to be more willing to use PHRs. Investigating willingness should contribute to the development of more useful PHRs for self-management among patients prescribed medications for lifestyle-related diseases.
| S-EPMC7290452 | biostudies-literature
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.
| S-EPMC8130979 | biostudies-literature
Project description:BackgroundHealth research using commercial data is increasing. The evidence on public acceptability and sociodemographic characteristics of individuals willing to share commercial data for health research is scarce.ObjectiveThis survey study investigates the willingness to share commercial data for health research in the United Kingdom with 3 different organizations (government, private, and academic institutions), 5 different data types (internet, shopping, wearable devices, smartphones, and social media), and 10 different invitation methods to recruit participants for research studies with a focus on sociodemographic characteristics and psychological predictors.MethodsWe conducted a web-based survey using quota sampling based on age distribution in the United Kingdom in July 2020 (N=1534). Chi-squared tests tested differences by sociodemographic characteristics, and adjusted ordered logistic regressions tested associations with trust, perceived importance of privacy, worry about data misuse and perceived risks, and perceived benefits of data sharing. The results are shown as percentages, adjusted odds ratios, and 95% CIs.ResultsOverall, 61.1% (937/1534) of participants were willing to share their data with the government and 61% (936/1534) of participants were willing to share their data with academic research institutions compared with 43.1% (661/1534) who were willing to share their data with private organizations. The willingness to share varied between specific types of data-51.8% (794/1534) for loyalty cards, 35.2% (540/1534) for internet search history, 32% (491/1534) for smartphone data, 31.8% (488/1534) for wearable device data, and 30.4% (467/1534) for social media data. Increasing age was consistently and negatively associated with all the outcomes. Trust was positively associated with willingness to share commercial data, whereas worry about data misuse and the perceived importance of privacy were negatively associated with willingness to share commercial data. The perceived risk of sharing data was positively associated with willingness to share when the participants considered all the specific data types but not with the organizations. The participants favored postal research invitations over digital research invitations.ConclusionsThis UK-based survey study shows that willingness to share commercial data for health research varies; however, researchers should focus on effectively communicating their data practices to minimize concerns about data misuse and improve public trust in data science. The results of this study can be further used as a guide to consider methods to improve recruitment strategies in health-related research and to improve response rates and participant retention.
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Project description:BackgroundSharing data from wearable health and activity trackers (wearables) with others may improve the health and behavioral outcomes of wearable users by generating social support and improving their ability to manage their health. Investigating individual factors that influence US adults' willingness to share wearable data with different types of individuals may provide insights about the population subgroups that are most or least likely to benefit from wearable interventions. Specifically, it is necessary to identify digital health behaviors potentially associated with willingness to share wearable data given that the use of and engagement with various technologies may broadly influence web-based health information-sharing behaviors.ObjectiveThis study aims to identify sociodemographic, health, and digital health behavior correlates of US adults' willingness to share wearable data with health care providers and family or friends.MethodsData for the analytic sample (N=1300) were obtained from the 2019 Health Information National Trends Survey of the National Cancer Institute. Digital health behavior measures included frequency of wearable device use, use of smartphones or tablets to help communicate with providers, use of social networking sites to share health information, and participation in a web-based health community. Multivariable logistic regression analysis of weighted data examined the associations between digital health behaviors and willingness to share wearable device data, controlling for sociodemographics and health-related characteristics.ResultsMost US adults reported willingness to share wearable data with providers (81.86%) and with family or friends (69.51%). Those who reported higher health self-efficacy (odds ratio [OR] 1.97, 95% CI 1.11-3.51), higher level of trust in providers as a source of health information (OR 1.98, 95% CI 1.12-3.49), and higher level of physical activity (OR 2.00, 95% CI 1.21-3.31) had greater odds of willingness to share data with providers. In addition, those with a higher frequency of wearable use (OR 2.15, 95% CI 1.35-3.43) and those who reported use of smartphones or tablets to help communicate with providers (OR 1.99, 95% CI 1.09-3.63) had greater odds of willingness to share data with providers. Only higher level of physical activity was associated with greater odds of willingness to share wearable data with family or friends (OR 1.70, 95% CI 1.02-2.84). Sociodemographic factors were not significantly associated with willingness to share wearable data.ConclusionsThe findings of this study suggest that, among US adult wearable users, behavior-related factors, rather than sociodemographic characteristics, are key drivers of willingness to share health information obtained from wearables with others. Moreover, behavioral correlates of willingness to share wearable data are unique to the type of recipient (ie, providers vs family or friends). Future studies could use these findings to inform the development of interventions that aim to improve the use of patient-generated data from wearable devices in health care settings.
| S-EPMC8713093 | biostudies-literature
Project description:We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed to investigate what views are held by the general public, and what aspects matter for the willingness to let one's data be used not only for one's own care but also for other purposes. We found that while there is a broad willingness to let one's data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy.
| S-EPMC8254641 | biostudies-literature
Project description:BackgroundWearable devices that are used for observational research and clinical trials hold promise for collecting data from study participants in a convenient, scalable way that is more likely to reach a broad and diverse population than traditional research approaches. Amazon Mechanical Turk (MTurk) is a potential resource that researchers can use to recruit individuals into studies that use data from wearable devices.ObjectiveThis study aimed to explore the characteristics of wearable device users on MTurk that are associated with a willingness to share wearable device data for research. We also aimed to determine whether compensation was a factor that influenced the willingness to share such data.MethodsThis was a secondary analysis of a cross-sectional survey study of MTurk workers who use wearable devices for health monitoring. A 19-question web-based survey was administered from March 1 to April 5, 2018, to participants aged ≥18 years by using the MTurk platform. In order to identify characteristics that were associated with a willingness to share wearable device data, we performed logistic regression and decision tree analyses.ResultsA total of 935 MTurk workers who use wearable devices completed the survey. The majority of respondents indicated a willingness to share their wearable device data (615/935, 65.8%), and the majority of these respondents were willing to share their data if they received compensation (518/615, 84.2%). The findings from our logistic regression analyses indicated that Indian nationality (odds ratio [OR] 2.74, 95% CI 1.48-4.01, P=.007), higher annual income (OR 2.46, 95% CI 1.26-3.67, P=.02), over 6 months of using a wearable device (OR 1.75, 95% CI 1.21-2.29, P=.006), and the use of heartbeat and pulse tracking monitoring devices (OR 1.60, 95% CI 0.14-2.07, P=.01) are significant parameters that influence the willingness to share data. The only factor associated with a willingness to share data if compensation is provided was Indian nationality (OR 0.47, 95% CI 0.24-0.9, P=.02). The findings from our decision tree analyses indicated that the three leading parameters associated with a willingness to share data were the duration of wearable device use, nationality, and income.ConclusionsMost wearable device users indicated a willingness to share their data for research use (with or without compensation; 615/935, 65.8%). The probability of having a willingness to share these data was higher among individuals who had used a wearable for more than 6 months, were of Indian nationality, or were of American (United States of America) nationality and had an annual income of more than US $20,000. Individuals of Indian nationality who were willing to share their data expected compensation significantly less often than individuals of American nationality (P=.02).
| S-EPMC8569545 | biostudies-literature