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

Abstract

Background The ability of healthcare to protect sensitive personal data in medical records and registers might influence public trust, which in turn might influence willingness to allow healthcare to use such data. The aim of this study was to examine how the general public’s trust relates to their attitudes towards uses of health data. Methods A stratified sample from the general Swedish population received a questionnaire about their willingness to share health data. Respondents were also asked about their trust in the management and protection of electronic health data. Results A large majority (81.9%) of respondents revealed high levels of trust in the ability of healthcare to protect electronic patient data. Good health was associated with significantly higher levels of trust compared to bad health. Respondents with low levels of trust were significantly less willing to allow personal data to be used for different purposes and were more inclined to insist on being asked for permission beforehand. Those with low levels of trust also perceived risks of unauthorized access to personal data to be higher and the likely damage of such unauthorized access worse, compared to those with high levels of trust. Conclusions Trust in the ability of healthcare to protect electronic health is generally high in Sweden. Those with higher levels of trust are more willing to let their data be used, including without informed consent. It thus seems crucial to promote trust in order to be able to reap the benefits that digitalization makes possible through increased access and use of data in healthcare.

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

“…Participants’ willingness to share their PHI depended not only on whom they were sharing it with but also on how their PHI was to be used and for what purpose. Belfrage et al [ 109 ] found that most survey participants would not allow their EHR data to be used for quality assurance, research, or clinical education. In contrast, those who were more trusting of the health care system were more willing to permit these uses.…”

“…Moreover, participants with high levels of distrust in the health care system and those without a usual source of care were less supportive of secondary uses of their electronic PHI [ 110 ]. A Swedish health system user survey also found that participants with a self-reported health status of “good or very good” had higher trust in the health care system than those with a “bad or very bad” self-reported health status [ 109 ]. A focus group study by Murphy et al [ 111 ] found that, after headlines about the Cambridge Analytica scandal emerged, participants acknowledged a greater responsibility toward protecting their PHI; however, many participants did not act to safeguard their PHI further.…”

“…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].…”

Digital Health Care, Telemedicine, and Medicolegal Issues in Orthopedics: A Review

“…Moreover, the acceptance of new technologies lies in cultural aspects (e.g., perceived ease of use, perceived usefulness, trust in personal data management, and others). The above raises an important aspect of sensitizing telemedicine professionals and their users to cultural issues where the adoption of standard definitions and protocols could help overcome these issues [ 16 , 17 , 18 , 19 , 20 , 21 , 22 ]. Notwithstanding that in 2002, Loane raised concerns regarding the scarcity of guidelines and standards in telemedicine, the selected studies did not assess the issue [ 23 ].…”

Evidence-based guiding principles to build public trust in personal data use in health systems

“…Its importance has been further highlighted in the response to the COVID-19 pandemic. [13][14][15] Public trust is particularly important for the success of a range of data-driven health system activities such as public uptake of contact tracing apps during the COVID-19 pandemic, [16][17][18][19] public and professional acceptance of artificial intelligence applications in health care, [20][21][22] the establishment of integrated electronic health data records and personal data sharing, [23][24][25][26][27] donation of bio samples and personal data for research purposes [28][29][30] and the public acceptance of digital health provision more broadly. 31 Research in this area shows that public trust is a complex phenomenon that is not easy to maintain and build.…”