COOP Paper “When medical expertise meets record expertise: the practices of patients’ accessible medical records in China”
My paper with Yunan Chen was accepted to the 11th International Conference on the Design of Cooperative Systems.
Abstract: Recent consumer, private sector, and governmental health informatics initiatives outline patient accessible medical records (PAMR) as key for engaging patients and supporting patient-clinician communication. However, many challenges have been encountered in designing usable digital systems for patients to access and use their medical records. Barriers to such systems include social, cultural, and policy constraints in addition to usability problems. In particular, questions of expertise, responsibility, and ownership surrounding medical records are often hotly contested between medical professionals and healthcare organizations. In broaching the design challenge of PAMR, much can be learned from examining existing practices for patient carried and accessible records in contexts where these practices are well established. We examine practices surrounding PAMR in a setting where medical records have long been managed by patients: the Chinese healthcare system. Through close examination of managing medical records and sharing medical health information, we find that these personal record practices in China enable a two-way medical records sharing practice between patients and their providers, which fundamentally reconfigures the patient role in healthcare process, facilitates development of ‘record expertise’ on the part of patients, and joint responsibility for health management. We use these findings to illuminate the potential benefits of PAMR, and to offer design considerations to optimize future systems design and deployment efforts in other contexts.
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