The Impacts of the Perceived Transparency of Privacy Policies and Trust in Providers for Building Trust in Health Information Exchange: Empirical Study

Esmaeilzadeh, Pouyan

doi:10.2196/14050

Cited by 37 publications

(39 citation statements)

References 91 publications

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“…One way to interpret this is that one learns through previous experience what to expect (correct or not) about risks and consequences if things go bad. This is not to deny that trust may also be influenced by other factors, for instance negative reports in traditional and social media, but how such news are perceived may be strongly influenced by what level of trust one already has [ 23 , 25 , 26 ].…”

Section: Discussionmentioning

confidence: 99%

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

2022

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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.

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Section: Discussionmentioning

confidence: 99%

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

2022

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“…Previous studies indicated that a privacy policy can improve user trust and loyalty in health care providers, thus influencing health information exchange behaviors in users [27]. In the interactive professional health care knowledge sharing process of an OHC, patients may increase their trust in doctors when they are protected by doctors' privacy protection settings, thus feeling encouraged to share more personal health care information during communication [28].…”

Section: The Enhancing Power Of Privacy Protection On Interactive Promentioning

confidence: 99%

Privacy Protection in Online Health Communities: Natural Experimental Empirical Study

2020

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Background An online health community (OHC) is a novel sharing channel through which doctors share professional health care knowledge with patients. While doctors have the authority to protect their patients’ privacy in OHCs, we have limited information on how doctors’ privacy protection choices affect their professional health care knowledge sharing with patients. Objective We examined the relationship between privacy protection and professional health care knowledge sharing in OHCs. Specifically, we examined the effects of privacy protection settings in an OHC on doctors’ interactive professional health care knowledge sharing and searching professional health care knowledge sharing (two dimensions of professional health care knowledge sharing). Moreover, we explored how such effects differ across different levels of disease stigma. Methods We collected the monthly panel data of 19,456 doctors from Good Doctor, one of the largest OHCs in China, from January 2008 to April 2016. A natural experimental empirical study with difference-in-difference analysis was conducted to test our hypotheses. The time fixed effect and the individual fixed effect were both considered to better identify the effects of a privacy protection setting on professional health care knowledge sharing. Additionally, a cross-sectional analysis was performed for a robust check. Results The results indicate that the privacy protection setting has a significant positive effect on interactive professional health care knowledge sharing (β=.123, P<.001). However, the privacy protection setting has a significant negative effect on searching professional health care knowledge sharing (β=–.225, P=.05). Moreover, we found that high disease stigma positively impacts the effect of privacy protection on interactive professional health care knowledge sharing (coefficients are in the same valence) and negatively impacts the effects of privacy protection on searching professional health care knowledge sharing (coefficients are in the reverse valence). Conclusions Privacy protection has a bilateral effect on professional health care knowledge sharing (ie, a positive effect on interactive professional health care knowledge sharing and a negative effect on searching professional health care knowledge sharing). Such bilateral switches of professional health care knowledge sharing call for a balanced state in conjunction with practical implications. This research also identifies a moderate effect of disease stigma on privacy protection settings and professional health care knowledge sharing.

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“…Increased access to data for secondary use is complex and continues to attract strong debate within the health and scientific communities as well as the general public. While researchers are now being encouraged to increase data accessibility for secondary research [ 6 , 7 ], a range of stakeholder-perceived barriers and concerns remain, including issues such as trust, transparency, and privacy [ 8 , 9 ]. Despite the impact of these issues on willingness to share data, there is a lack of synthesis of stakeholder views to guide policy and practice.…”

Section: Introductionmentioning

confidence: 99%

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

et al. 2020

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We aimed to synthesise data on issues related to stakeholder perceptions of privacy, trust, and transparency in use of secondary data. A systematic literature review of healthcare consumer attitudes towards the secondary use and sharing of health administrative and clinical trial data was conducted. EMBASE/MEDLINE, Cochrane Library, PubMed, CINAHL, Informit Health Collection, PROSPERO Database of Systematic Reviews, PsycINFO, and ProQuest databases were searched. Eligible articles included those reporting qualitative or quantitative original research and published in English. No restrictions were placed on publication dates, study design or disease setting. One author screened articles for eligibility, and two authors were involved in the full text review process. Data was extracted using a pre-piloted data extraction template by one author and checked by another. Conflicts were resolved by consensus. Quality and bias were assessed using the QualSyst criteria for qualitative and quantitative studies. This paper focuses on a subset of 35 articles identified from the wider search which focus on issues of privacy, trust, and transparency. Studies included a total of 56,365 respondents. Results of this systematic literature review indicate that while respondents identified advantages in sharing health data, concerns relating to trust, transparency, and privacy remain. Organisations collecting health data and those who seek to share data or undertake secondary data analysis should continue to develop trust, transparency, and privacy with healthcare consumers through open dialogue and education. Consideration should be given to these issues at all stages of data collection including the conception, design, and implementation phases. While individuals understand the benefits of health data sharing for research purposes, ensuring a balance between public benefit and individual privacy is essential. Researchers and those undertaking secondary data analysis need to be cognisant of these key issues at all stages of their research. Systematic review registration: PROSPERO registration number CRD42018110559 (update June 2020).

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The Impacts of the Perceived Transparency of Privacy Policies and Trust in Providers for Building Trust in Health Information Exchange: Empirical Study

Cited by 37 publications

References 91 publications

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

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

Privacy Protection in Online Health Communities: Natural Experimental Empirical Study

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

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