Mapping out Trust in Digital Health Systems
By Emma Norris, on 22 January 2019
By Afua van Haasteren & Effy Vayena – ETH Zurich
Technology is steadily altering healthcare systems worldwide. This transformation is in-part driven by the perception that technology can mitigate emerging healthcare issues such as rising healthcare costs. Various aspects of digital health have been widely publicized as a technological panacea for such healthcare system challenges. In the absence of an agreed upon definition, digital health has been described as a term that encompasses health information technology, mobile health, electronic health records, wearable devices, personalized medicine, telehealth, and telemedicine.
So far, several advantages for including digital health technologies in healthcare systems have been identified. In fact, research suggests that some types of digital health can improve overall health systems by advancing health system safety and reducing medication errors. For digital health to deliver on its promises however, it is important to address many ethical issues – such as privacy, data security, and trust – that stand to undermine its potential. In terms of the ethical challenges arising from digital health, trust in particular, has been chronically underexamined.
In our new study “Elements of Trust in Digital Health Systems: Scoping Review”, we set out to achieve two aims. First, to map out the relevant stakeholders in digital health; and second, to identify the enablers and impediments to trust in digital health. Previous studies have characterized trust as a relationship between two entities whereby one entity remains optimistic that the other will fulfil their expectation. Since a trust relationship lacks definitive reassurances about the actions of the trusted party, it tends to be inundated with uncertainties and vulnerabilities. As such, the entity responsible for fulfilling an expectation must not only be competent and reliable but also exhibit a high level of honesty. The patient-physician relationship is a prime example of the value of these trust attributes. With this background knowledge of trust in mind, we hypothesized that minimal risks and uncertainties are required to boost stakeholders’ trust in digital health technologies and services.
We conducted a scoping review to analyze this topic. Altogether, 278 articles from 40 countries were included in this study.
Our results illustrated that there is no consensus on the terminologies used to describe digital health technologies and services. In some cases, very slight variations distinguished one terminology from the other. The primary stakeholders identified were Patients and health care professionals while health administrators were less predominant stakeholders. To map out the elements to trust in digital health, it was prudent to classify them into enablers and impediments. These elements were further aggregated into personal, technological, and institutional factors.
The review uncovered several enablers of trust in digital health. At the personal level, individuals valued useful technologies that required minimum effort to use. They also expected that the data derived from these technologies would be widely accessible. Recommendations from family or friends, sociodemographic factors, altruism as well as an individual’s confidence in managing their health were some other trust enablers. In terms of technological factors, digital health systems that prioritized privacy, provided end-users with the capacity to personalize features, and were interoperable enabled trust. The institutional enablers of trust identified include: decreased workloads, an outstanding service provider reputation, stakeholder engagement, effective communication with stakeholders, initial face-to-face contact between relevant stakeholders, and standardized guidelines that define how these technologies should be used.
This study also identified several impediments to trust in digital health. Sociodemographic factors again emerged as a trust inhibitor at the personal level. The other personal factors ranged from limited accessibility to digital health devices, exorbitant costs and concerns about data exploitation. Digital health devices that were susceptible to malfunctions discouraged trust at the technological level; while at the institutional level, a blemished service provider reputation coupled with insufficient training and poor information quality were the impediments to trust. Digital health services that received little to no publicity and were time-consuming for users were other inhibitors of trust at the institutional level.
This study revives the discourse on the overarching role of trust in healthcare. By spotlighting the relevant stakeholders and the elements of trust in digital health, it contributes to valuable research that is vital for the uptake of emerging technology services in healthcare. Forging ahead, researchers must attempt to design metrics that measure the trustworthiness of digital health technologies, bearing in mind the complex role of sociodemographic factors to trust.
The full paper can be found here.
- How can digital health be accurately defined?
- Which metrics are appropriate to measure the trustworthiness of digital health technologies or services?
- What effect do specific sociodemographic factors have on trust in digital health?
Afua van Haasteren (nèe Adjekum) is a PhD student at the Health Ethics and Policy Lab, ETH Zürich. Her current work aims to map out trust in digital health.
Effy Vayena is a Professor of Bioethics at ETH Zurich and leads the Health Ethics and Policy Lab: @EffyVayena