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

Abstract

Background: 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.

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.

Methods: 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.

Results: Using stakeholder co-design, we built, and are currently pilot-testing, a person-centered patient portal smartphone app called Opal.

Conclusions: 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.

Keywords: patient participation; patient portals; software design; telemedicine.

Conflict of interest statement

Conflicts of Interest: None declared.

©John Kildea, John Battista, Briana Cabral, Laurie Hendren, David Herrera, Tarek Hijal, Ackeem Joseph. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 11.02.2019.

Figures

Figure 1

Approximate timeline for the Opal project showing how the 6 elements of our participatory stakeholder co-design methodology came together, culminating in the pilot release of Opal in Radiation Oncology. Each element is numbered in the figure and explained in the text. Just over 3 years of co-design and development were undertaken between the development kick off (May 2015) and the pilot release (June 2018). Figure not to scale.

Figure 2

Distribution of the ages and smartphone usage of the 361 cancer patients who participated in our waiting room survey. Overall, 66% (237) of the respondents reported that they use a smartphone. These data demonstrate that a smartphone app would reach a broad patient population. The survey was conducted during the summer of 2016 and repeated during the summer of 2017 in the waiting rooms of our cancer center.

Figure 3

Patient preferences with regard to the personal health information (PHI) that they would like to access via an app or portal. We only included responses from patients who reported that they had a smartphone and who selected just 1 of the 3 options (n=232).

Figure 4

Screenshots of the Opal app demonstrating how the user interface changed based on feedback received during the first focus group. (a) The pre-focus group hamburger menu (illustrated by the red arrow and outlined section) was replaced with (b) a simpler and more intuitive bottom-of-the-screen tab-based menu.

Figure 5

Screenshots of the Opal smartphone app provided in the pilot release, showing the Home view, the My Chart view, the radiotherapy treatment planning view, and the education material library.

Figure 6

Two examples of how Opal contextualizes patient data. On the left, the Computed Tomography (CT) Simulation for Radiotherapy Planning appointment is linked to explanatory material about the CT Simulation procedure. On the right, the Platelet Count blood test results are linked to explanatory material at labtestsonline.org. The red arrows highlight the area in the left view that when tapped brings the user to the view on the right.