Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Karampela, Maria; Ouhbi, Sofía; Isomursu, Minna

doi:10.2196/14537

Cited by 37 publications

(30 citation statements)

References 68 publications

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“…Previous research on people’s willingness to share health data digitally has focused on one particular factor, such as the purpose of data sharing [ 6 , 7 ]. In addition, these studies in this area have been constrained by a specific context, such as looking at data movement within a health care setting [ 8 , 13 , 14 ]. To our knowledge, no studies have investigated how individuals’ preferences change depending on the context in which health data are used, what type of information is involved, which different control mechanisms are considered appropriate for different contexts, and how an individual’s acceptance of sharing data might change in response to changing contexts.…”

Section: Introductionmentioning

confidence: 99%

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Johansson¹,

Bentzen²,

Shah³

et al. 2021

JMIR Med Inform

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Background Digital technological development in the last 20 years has led to significant growth in digital collection, use, and sharing of health data. To maintain public trust in the digital society and to enable acceptable policy-making in the future, it is important to investigate people’s preferences for sharing digital health data. Objective The aim of this study is to elicit the preferences of the public in different Northern European countries (the United Kingdom, Norway, Iceland, and Sweden) for sharing health information in different contexts. Methods Respondents in this discrete choice experiment completed several choice tasks, in which they were asked if data sharing in the described hypothetical situation was acceptable to them. Latent class logistic regression models were used to determine attribute-level estimates and heterogeneity in preferences. We calculated the relative importance of the attributes and the predicted acceptability for different contexts in which the data were shared from the estimates. Results In the final analysis, we used 37.83% (1967/5199) questionnaires. All attributes influenced the respondents’ willingness to share health information (P<.001). The most important attribute was whether the respondents were informed about their data being shared. The possibility of opting out from sharing data was preferred over the opportunity to consent (opt-in). Four classes were identified in the latent class model, and the average probabilities of belonging were 27% for class 1, 32% for class 2, 23% for class 3, and 18% for class 4. The uptake probability varied between 14% and 85%, depending on the least to most preferred combination of levels. Conclusions Respondents from different countries have different preferences for sharing their health data regarding the value of a review process and the reason for their new use. Offering respondents information about the use of their data and the possibility to opt out is the most preferred governance mechanism.

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Section: Introductionmentioning

confidence: 99%

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Johansson¹,

Bentzen²,

Shah³

et al. 2021

JMIR Med Inform

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show abstract

“…However, people are still reluctant to share their PHD for various reasons including privacy concerns, fear of discrimination, and the potential abuse of their data for commercial gain [1][2][3]. Peoples' willingness to share their PHD changes depending on the sensitivity of the data, the purpose of its use, the trustworthiness of the users, and the type of data and its safety [3][4][5]. Indeed, previous studies reported a higher willingness to share PHD with researchers rather than commercial entities [2][3][4][5] and indicated that people are willing to share their data when there is a clear public benefit.…”

Section: Introductionmentioning

confidence: 99%

“…Peoples' willingness to share their PHD changes depending on the sensitivity of the data, the purpose of its use, the trustworthiness of the users, and the type of data and its safety [3][4][5]. Indeed, previous studies reported a higher willingness to share PHD with researchers rather than commercial entities [2][3][4][5] and indicated that people are willing to share their data when there is a clear public benefit. In addition, people are more reluctant to share sensitive health data, i.e., data that carries high personal risks if disclosed [1,5], and need to know that regulatory and technical safeguards exist when sharing their PHD [3].…”

Section: Introductionmentioning

confidence: 99%

Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

Helou

Abou-Khalil

Helou

et al. 2021

Studies in Health Technology and Informatics

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Using an online survey, we examined the relationships between the perceived usefulness, sensitivity, and anonymity of personal health data and people’s willingness to share it with researchers. An analysis of 112 responses showed that people’s willingness and perceptions are related to the type of the data, their trust in the data’s anonymity, and their personal sociodemographic characteristics. In general, we found that people do not completely trust that their identities remain anonymous when sharing data anonymously with researchers. We also found that they are more willing to share personal health data with researchers if they perceive it as useful for public health research, not sensitive, and if they trust that their identity will remain anonymous after sharing it. We also found that people’s age, gender, occupation, and region of residence may be related to their perceptions regarding the sharing of personal health data.

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“…The most common reason was "lack of regulations". This is a common ethical issue that faces research in most developing countries [34][35][36] which may be resolved by institutional initiatives. The second most common reason was the opinion that data should not be available to the public, which could be solved by providing more orientation to researchers about the importance as well as advantages of data sharing.…”

Section: Discussionmentioning

confidence: 99%

<p>Biomedical Data Sharing Among Researchers: A Study from Jordan</p>

Al-Ebbini¹,

Khabour²,

Alzoubi³

et al. 2020

JMDH

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Background: Data sharing is an encouraged practice to support research in all fields. For that purpose, it is important to examine perceptions and concerns of researchers about biomedical data sharing, which was investigated in the current study. Methods: This is a cross-sectional survey study that was distributed among biomedical researchers in Jordan, as an example of developing countries. The study survey consisted of questions about demographics and about respondent's attitudes toward sharing of biomedical data. Results: Among study participants, 46.9% (n=82) were positive regarding making their research data available to the public, whereas 53.1% refused the idea. The reasons for refusing to publicly share their data included "lack of regulations" (33.5%), "access to research data should be limited to the research team" (29.5%), "no place to deposit the data" (6.5%), and "lack of funding for data deposition" (6.0%). Agreement with the idea of making data available was associated with academic rank (P=0.003). Moreover, gender (P-value=0.043) and number of publications (P-value=0.005) were associated with a time frame for data sharing (ie, agreeing to share data before vs after publication). Conclusion: About half of the respondents reported a positive attitude toward biomedical data sharing. Proper regulations and facilitation data deposition can enhance data sharing in Jordan.

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Connected Health User Willingness to Share Personal Health Data: Questionnaire Study

Cited by 37 publications

References 68 publications

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

Factors Related to Personal Health Data Sharing: Data Usefulness, Sensitivity and Anonymity

<p>Biomedical Data Sharing Among Researchers: A Study from Jordan</p>

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