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

John Kildea,Ackeem Joseph,Briana Cabral,Laurie Hendren,John Battista,David Herrera,Tarek Hijal

doi:10.2196/11371

Abstract

BackgroundPatient 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.ObjectiveThe 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.MethodsOur 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.ResultsUsing stakeholder co-design, we built, and are currently pilot-testing, a person-centered patient portal smartphone app called Opal.ConclusionsInclusion 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.

Highlights

A patient portal, in its most basic form, is a secure extension of a health care institution’s electronic medical record (EMR) that is accessible to patients [1,2]
We present the results of our design and development research project that gave rise to Opal as a person-centered patient portal, and we detail the contributions provided by each element of our participatory stakeholder co-design methodology
The tendency in the hierarchical health care system is to assume that a project must be led by a clinician, and it is commonly assumed that the patient participant is a token member of the team

Summary

Introduction

ContextA patient portal, in its most basic form, is a secure extension of a health care institution’s electronic medical record (EMR) that is accessible to patients [1,2]. Objective: 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. As is the case for most health care technology, the development of a person-centered patient portal is complex, involving many stakeholders and numerous organizational layers that each may determine the success or failure of the initiative [15,17,18,19]. In the case of design of a person-centered patient portal, as was the aim of this study, the patient is the user, and patient involvement brings the design process into the realm of patient co-design, which itself is increasingly recognized as an integral component of sustainable quality improvement in health care [34,35,36]. The design process is only participatory stakeholder co-design if all stakeholders are fully and involved

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Discussion

Conclusion