Dataset Information

Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.

ABSTRACT: BACKGROUND:Advances 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. OBJECTIVE:This 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. METHODS:This 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. RESULTS:The 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). CONCLUSIONS:The 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.

SUBMITTER: Bouras A

PROVIDER: S-EPMC7434052 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.

Bouras Adam A Simoes Eduardo J EJ Boren Suzanne S Hicks Lanis L Zachary Iris I Buck Christoph C Dhingra Satvinder S Ellis Richard R

Journal of participatory medicine 20200515 2

<h4>Background</h4>Advances 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.<h4>Objective</h4>Thi ...[more]

PMID: 33064096

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Project description:BackgroundCancer health disparities research depends on access to biospecimens from diverse racial/ethnic populations. This multimethodological study, using mixed methods for quantitative and qualitative analysis of survey results, assessed barriers, concerns, and practices for sharing biospecimens/data among researchers working with biospecimens from minority populations in a 5 state region of the United States (Arizona, Colorado, New Mexico, Oklahoma, and Texas). The ultimate goals of this research were to understand data sharing barriers among biomedical researchers; guide strategies to increase participation in biospecimen research; and strengthen collaborative opportunities among researchers.Methods and populationEmail invitations to anonymous participants (n = 605 individuals identified by the NIH RePORT database), resulted in 112 responses. The survey assessed demographics, specimen collection data, and attitudes about virtual biorepositories. Respondents were primarily principal investigators at PhD granting institutions (91.1%) conducting basic (62.3%) research; most were non-Hispanic White (63.4%) and men (60.6%). The low response rate limited the statistical power of the analyses, further the number of respondents for each survey question was variable.ResultsFindings from this study identified barriers to biospecimen research, including lack of access to sufficient biospecimens, and limited availability of diverse tissue samples. Many of these barriers can be attributed to poor annotation of biospecimens, and researchers' unwillingness to share existing collections. Addressing these barriers to accessing biospecimens is essential to combating cancer in general and cancer health disparities in particular. This study confirmed researchers' willingness to participate in a virtual biorepository (n = 50 respondents agreed). However, researchers in this region listed clear specifications for establishing and using such a biorepository: specifications related to standardized procedures, funding, and protections of human subjects and intellectual property. The results help guide strategies to increase data sharing behaviors and to increase participation of researchers with multiethnic biospecimen collections in collaborative research endeavors.ConclusionsData sharing by researchers is essential to leveraging knowledge and resources needed for the advancement of research on cancer health disparities. Although U.S. funding entities have guidelines for data and resource sharing, future efforts should address researcher preferences in order to promote collaboration to address cancer health disparities.

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.

Project description:BackgroundThe rapidly evolving digital environment of the social media era has increased the reach of both quality health information and misinformation. Platforms such as YouTube enable easy sharing of attractive, if not always evidence-based, videos with large personal networks and the public. Although much research has focused on characterizing health misinformation on the internet, it has not sufficiently focused on describing and measuring individuals' information competencies that build resilience.ObjectiveThis study aims to assess individuals' willingness to share a non-evidence-based YouTube video about strengthening the immune system; to describe types of evidence that individuals view as supportive of the claim by the video; and to relate information-sharing behavior to several information competencies, namely, information literacy, science literacy, knowledge of the immune system, interpersonal trust, and trust in health authority.MethodsA web-based survey methodology with 150 individuals across the United States was used. Participants were asked to watch a YouTube excerpt from a morning TV show featuring a wellness pharmacy representative promoting an immunity-boosting dietary supplement produced by his company; answer questions about the video and report whether they would share it with a cousin who was frequently sick; and complete instruments pertaining to the information competencies outlined in the objectives.ResultsMost participants (105/150, 70%) said that they would share the video with their cousins. Their confidence in the supplement would be further boosted by a friend's recommendations, positive reviews on a crowdsourcing website, and statements of uncited effectiveness studies on the producer's website. Although all information literacy competencies analyzed in this study had a statistically significant relationship with the outcome, each competency was also highly correlated with the others. Information literacy and interpersonal trust independently predicted the largest amount of variance in the intention to share the video (17% and 16%, respectively). Interpersonal trust was negatively related to the willingness to share the video. Science literacy explained 7% of the variance.ConclusionsPeople are vulnerable to web-based misinformation and are likely to propagate it on the internet. Information literacy and science literacy are associated with less vulnerability to misinformation and a lower propensity to spread it. Of the two, information literacy holds a greater promise as an intervention target. Understanding the role of different kinds of trust in information sharing merits further research.

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).

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.

Dataset Information

Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.

Publications

Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.

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