JMIR Publications

ABSTRACT

Background:

Digital Health has the potential to improve the quality of care, reduce healthcare costs, and increase patient satisfaction. For effective data sharing through Digital Health Information Exchanges (HIE) and Electronic Health Records (EHR), patient acceptance and consent are a prerequisite. Patients need to form and retain trust in the system used. Enabling patients to be the sovereign of the own data is crucial for a system’s success.

Objective:

We aim to gain a deeper insight into the issue of trust in HIE and answer the question: How does an individual form a behavioral intent to share data with an HIE platform? We contribute to the discussion on trust and informed consent in digital health in the following ways: (1) we synthesize the main influence factor models into a complex model of trust in HIE, (2) we verify influence factors through a qualitative analysis process with patient interviews within a German healthcare setting, (3) we develop a model of trust formation for digital health applications.

Methods:

Based on a structured literature review, we identify four relevant models of trust formation in a healthcare setting and develop a complex model on the formation of trust and the intention to share personal health data. We validate the influence factors through qualitative, semi-structured interviews in a German healthcare setting and adapt our initial model based on the interview results.

Results:

We combine the antecedent-privacy concern-outcome approach with a belief-attitude-intention framework and develop a model of behavior formation for data sharing with an HIE. We confirm that patients show a positive intent to share their PHI with HIE, under certain conditions such as (perceived) data security and a non-commercial recipient of the data. Technology experiences, age, policy and regulation, and a disposition to trust play an important role for one’s privacy concern, which combined with social influence affects trust formation on a cognitive and emotional level. We find a high level of cognitive trust in healthcare and non-commercial research institutions, but a distrust in commercial entities. Patients’ emotional trust depends on disposition and social influences. To form their intent to share, patients undergo a privacy calculus whereby an individual’s benefit such as convenience, benefits for one’s own health and the thought of public welfare often outweigh the perceived risks of data sharing.

Conclusions:

With the uptake of EHR and a higher demand for timely health data, HIE providers will need to clearly communicate the benefits of their solution and their data security measures to healthcare providers (physicians, nursing and administrative staff) and patients and include them as key partners. Offering easy access and educational measures as well as the option for specific consent may increase patients trust and their intention to share.