Design and Development of a Person-Centered Patient Portal Using Participatory Stakeholder Co-Design.

Abstract

Patient portals are increasingly accepted as part of standard medical care. However, to date, most patient portals provide just passive access to medical data. The use of modern technology such as smartphones and data personalization algorithms offers the potential to make patient portals more person-centered and enabling. The aim of this study is to share our experience in designing and developing a person-centered patient portal following a participatory stakeholder co-design approach. Our stakeholder co-design approach comprised 6 core elements: (1) equal coleadership, including a cancer patient on treatment; (2) patient preference determination; (3) security, governance, and legal input; (4) continuous user evaluation and feedback; (5) continuous staff input; and (6) end-user testing. We incorporated person-centeredness by recognizing that patients should decide for themselves their level of medical data access, all medical data should be contextualized with explanatory content, and patient educational material should be personalized and timely. Using stakeholder co-design, we built, and are currently pilot-testing, a person-centered patient portal smartphone app called Opal. Inclusion of all stakeholders in the design and development of patient-facing software can help ensure that the necessary elements of person-centeredness, clinician acceptability, and informatics feasibility are achieved.