Willingness to Share yet Maintain Influence: A Cross-Sectional Study on Attitudes in Sweden to the Use of Electronic Health Data

Abstract

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.

Trust and digital privacy in healthcare: a cross-sectional descriptive study of trust and attitudes towards uses of electronic health data among the general public in Sweden

“…The present cross-sectional study is based on a questionnaire survey developed and distributed by The Swedish Agency for Health and Care Services Analysis, which also presented overarching results in a report in Swedish [ 20 ]. Based on a reanalysis of data from this (first-time) survey, a paper investigating attitudes concerning the use of personal health data has previously been published [ 11 ]. The present study is also based on a reanalysis of data, specifically relating to issues of trust.…”

“…This development gives rise not only to benefits to individuals and society, but also to privacy concerns. Benefits for individual patients include more efficient and safer healthcare, increased possibilities for patient involvement, and more personalised treatments through the use of big data analytics [ 11 – 14 ]. Benefits for the collective, future patients, and society at large include improved possibilities for research on new treatments and organisational methods, quality assurance, identification of suitable treatments, preventive measures for specific groups, and so on [ 11 – 14 ].…”

Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review

“…Generally, study participants were willing to share their PHI under certain conditions. For example, participants expressed greater comfort and willingness to share their PHI with health care providers, academic researchers, and not-for-profit organizations [46,55,57,64,71,[102][103][104][105][106][107][108][109]. Participants were reluctant to share their PHI with for-profit organizations, pharmaceutical companies, government organizations, and researchers [46,55,57,64,71,103,[105][106][107][108]110].…”

Is there a “pandemic effect” on individuals’ willingness to take genetic tests?

“…In March 2020, we tested individuals' willingness to take a genetic test in a field survey in Switzerland sample (N = 1000). Our research builds on prior studies which emphasize that individuals cherish the protection of their personal health data [6,9,10], especially genetic data [11,13,14] because it is an infringement into physical privacy [19]. We thus tested whether different forms of storage to personal health data from genetic tests, would have different effects on citizens' willingness to take those tests.…”

“…Beyond care, health data can harness important benefits for research, provided that individuals consent to sharing their personal data. Research shows that trust in the institutions handling the data is thus of paramount importance in explaining willingness to share [4][5][6]. With the digitization of health data, questions of privacy are crucial to explain willingness to share this data [7][8][9][10].…”