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 with patients and stakeholders, and to pilot test, a discrete choice experiment (DCE)-based survey instrument to assess preferences for and potential uptake of DSMRs among adults taking two or more regular medications.

Methods:

We developed the instrument in three steps. First, we identified DSMR features from the scientific literature, Swiss policy documents, and earlier co-design workshops with patients. Second, a panel of ten stakeholders, including two patients, prioritized these features. Third, nine patients refined the attributes and levels in think-aloud interviews. The survey combined the DCE, including an opt-out alternative, with items on potential adoption factors and policy concerns. We pilot-tested it online with a convenience sample of 300 adults in French-speaking Switzerland who regularly took two or more medications and analyzed choices with a conditional logit model.

Results:

The first step yielded 17 dimensions covering 31 concepts, from which ten preliminary attributes were selected with the panel. Patient interviews reduced them to seven, covering shared content, access rights, responsibility for updating, the tool's main goal, additional features, certification, and an insurance premium discount. Of the 300 respondents, 97 (32%) took five or more medications. Most (246/300, 82%) passed the consistency test, 111 (37%) found the choice tasks difficult, and 49 (16%) always chose to continue as today. Respondents preferred a record updated by patients and professionals together, or by professionals, rather than by patients alone. They also preferred a certified tool, a history of changes, collaboration support as the tool's main goal, and a higher discount on the insurance premium. Additional features had no significant effect.

Conclusions:

The participatory development produced an instrument with acceptable response quality, ready for a larger sample in Switzerland and adaptable to other settings if changes are tested with patients. The preliminary preference for a record managed jointly by patients and professionals contrasts with the dominant designs worldwide and needs confirmation. Health authorities and innovators can use this tool to test DSMR designs and implementation strategies across population subgroups before costly investments. More broadly, it provides a practical method for engaging the public in digital health policymaking and co-creating patient-centered services.