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 | BMC Medical Ethics

The level of trust is high and seems to influence views on health data use

The results of this study suggest that there is considerable trust in Swedish healthcare and its ability to protect electronic health data among the respondents. Prior results show that the Swedish population has a significantly higher level of trust in healthcare as well as in other public authorities compared to other European countries and to the U.S. [8, 21, 22]. However, the results of this study also show that the respondents’ attitudes towards the use of their health data varied with their level of trust in healthcare. Those with low levels of trust were 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. Our interpretation is that trust influences attitudes and judgments in these respects.

Among both those with high and those with low levels of trust, rather few respondents rejected use of medical records for quality assurance, medical research, or clinical education purposes, i.e., for uses beyond their own immediate health interests. However, among those with high levels of trust, the proportion of respondents rejecting such uses was lower than among those with low levels of trust. There was a tendency among both those with high and those with low levels of trust to perceive quality assurance as a more acceptable use than medical research and even more so than clinical education purposes, even though the latter group was less positive than the former towards all uses. Quality assurance might perhaps be understood as more directly linked to the quality of present patients’ care, whereas research might be understood as generating less immediate benefits. Although it should be obvious that clinical education is a precondition for the existence of professional healthcare and high-quality treatment, use of data for educational purposes was treated with greater caution by the respondents.

Also a majority of those with high levels of trust regarded informed consent as a precondition for accepting that their medical record be used for medical research or clinical education. Nevertheless, trust seems to have influenced the responses, since those with low levels of trust to a greater extent considered informed consent a precondition for their approval. This is in accordance with previous studies [23, 24].

If our analysis is correct, it is imperative to maintain and increase the level of trust among the public, as this seems to be a precondition for broad acceptance of the use of health data for purposes of important social value beyond the benefits of the individual patient. Mechanisms of trust therefore warrant further study [18].

Levels of trust associated with self-reported health

A surprising result was that self-reported good health was associated with high levels of trust while self-reported bad health was associated with lower levels of trust. One explanation of this result could be that those with good health have fewer contacts with healthcare and therefore fewer potential occasions where they might get disappointed, while those in poor health have more contacts with healthcare and to a greater extent lose trust due to experienced realities. However, the result disagrees with some prior findings for which the opposite pattern of explanation was offered in [23]. Based on our result, we suggest that one’s trust in how healthcare handles electronic health data is influenced by one’s general trust in healthcare. It is known from previous studies that patients with negative healthcare encounters mistrust healthcare to a greater extent [9]. Another possible interpretation, in line with the feedback loops described in the introduction, is that those with limited trust tend to underestimate their own health status, while those with higher trust tend to do the opposite.

The connection between levels of trust, feeling wronged, and levels of health needs to be further explored.

Estimations of risks influenced by trust

The results of this study further indicate that trust in healthcare is associated with estimations of risks of unauthorized access to health data, and the severity of consequences following of such unauthorized access. Those with high levels of trust tend to estimate risks as lower and subsequent consequences as less serious, compared to those with low levels of trust. Relations between levels of trust and estimations of risk have been reported previously [18].

In other words, trust seems to influence the perception of reality. 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].

Implications

To be worthy of trust, one must be reliable in fulfilling expectations. However, to be trusted, it is not enough that one consistently acts in a trustworthy way and has the will to do so—the person trusting will also have to perceive that this is the case [27]. In the context of the present paper, patients’ trust in the healthcare system arguably has to do with the actual and perceived trustworthiness of its handling and protection of patient information from unauthorized access.

What healthcare can do to prove its competence and willingness to act in a way worthy of trust [27] is to set up and follow proper reliable routines for handling sensitive personal data—and to communicate with the individuals concerned that appropriate steps are taken and that the matter is taken seriously. This means that maintenance of trust requires reliable systems of data storage and retrieval, but also that the provider–patient communication is satisfactory both regarding the patient’s needs and regarding how data is protected. The communication part might involve taking time to listen to patients on how they prefer their data to be used and explain the ways in which their data will handled, including who will have access. It might also involve reassuring them of the safeguards in place to protect their privacy and ensuring they are aware of existing possibilities to influence how their data are to be used.

With reliable and well communicated routines in place, patients are more likely to end up in a positive feedback loop regarding trust, which facilitates use of electronic health records and other electronically stored health information in ways promotive to health, which in turn provides further appreciation of the reliability and productiveness of the system. Again, it is important not only that patients trust the handling of personal data, but also that this trust is adequate and deserved [28]. If not, short term benefits from data sharing may be turned into harms to patients who experience their privacy disrespected and as a consequence become less willing to share data and possibly also less inclined to be truthful in their encounters with healthcare.

Strengths and limitations

The low response rate of the questionnaire (30%) reflects a trend during the last decades of decreased response rates in survey-based research carried out in Sweden [20]. Well-known recurrent surveys also face this challenge [29]. This particular survey was made for the first time, was cognitively demanding, and required proficiency in Swedish. Furthermore, the government agency distributing it was formed only five years earlier and is probably not that well known. All these are factors that might be relevant in explaining the low response rate. The stratification procedure applied in the survey, inviting more potential participants from groups who usually have low response rates in questionnaires, probably further lowered the average response rate.

However, even though the response rate is quite low, it is not obvious that the main results—that levels of trust in healthcare influenced participants’ estimations and attitudes towards various issues associated with the use of health data—would have been different if the response rate had been higher. As in all cross-sectional studies, there is a risk for selection bias, particularly if the response rate is low.

Previous research indicates that the general public primarily associates trust in healthcare with interpersonal relationships (9). This could be a problem for the present study since trust in healthcare here refers to trust in the ability of healthcare to manage and protect electronic health data from unauthorized access. However, it may not, since previous research could be understood as saying merely that trust levels are influenced by micro-level events.

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