JMIR Publications

ABSTRACT

Background:

Digital shared medication records (DSMRs) are promoted to improve medication management across care settings, but implementation remains slow and challenging. Existing systems often fail to reflect patient-led changes, raising questions about why national initiatives do not allow patients or family caregivers to be directly involved in updating shared information. At the same time, little is known about how patients perceive these tools and what they expect. Public and patient involvement in the design of such systems has been minimal, leaving a critical gap in user-centered evidence to guide implementation.

Objective:

This study aimed to develop and pilot test a discrete choice experiment (DCE)-based survey instrument to assess patient preferences and estimated uptake of DSMRs. The tool is intended to inform the co-design of digital medication records that align with patient needs and support broader stakeholder decision-making.

Methods:

We developed the survey instrument in three phases. First, we identified relevant DSMR features from scientific literature and Swiss policy and technical documents. Second, we conducted a stakeholder and expert prioritization exercise to select attributes for the DCE. Third, we refined the attributes and levels through think-aloud interviews with patients. The final survey included the DCE, items on potential adoption factors, and questions addressing current policy concerns. We pilot-tested it online with 300 patients who regularly take multiple medications.

Results:

An initial list of 31 concepts was refined into 17 dimensions, ultimately yielding seven key DSMR attributes for the pilot: content, update responsibility, access rights, tool purpose, additional features, data protection, and financial incentives. Choice model estimations confirmed expected preference directions. Financial incentives, responsibility for updating, and data protection had the strongest influence on uptake, followed by content and primary purpose. Access rights and extra features were less impactful. Respondents favored collaborative medication plan management involving both patients and professionals over professional-only approaches.

Conclusions:

The instrument demonstrated strong potential for larger-scale use in Switzerland, with minor adaptations recommended for other settings. Health authorities and innovators can use this tool to test DSMR design and implementation strategies while generating context- and population-specific insights that would otherwise require costly and time-intensive evaluations. This approach supports strategic planning, including simulations to tailor implementation across subgroups. Such foresight can help optimize investments and reduce the risk of widening health inequities and digital divides. More broadly, the instrument provides a practical method for engaging the public in digital health policymaking and co-creating patient-centered services.