Persistent inequitable design and implementation of patient portals for users at the margins

Abstract

Objective Diane Forsythe and other feminist scholars have long shown how system builders’ tacit assumptions lead to the systematic erasure of certain users from the design process. In spite of this phenomena being known in the health informatics literature for decades, recent research shows how patient portals and electronic patients health records continue to reproduce health inequalities in Western societies. To better understand this discrepancy between scholarly awareness of such inequities and mainstream design, this study unravels the (conceptual) assumptions and practices of designers and others responsible for portal implementation in the Netherlands and how citizens living in vulnerable circumstances are included in this process. Materials and methods We conducted semistructured interviews (n = 24) and questionnaires (n = 14) with portal designers, health professionals, and policy advisors. Results In daily design practices, equity is seen as an “end-of-the-pipeline” concern. Respondents identify health care professionals rather than patients as their main users. If patients are included in the design, this generally entails patients in privileged positions. The needs of citizens living in vulnerable circumstances are not prioritized in design processes. Developers legitimize their focus with reference to the innovation-theoretical approach of the Diffusion of Innovations. Discussion and conclusion Although feminist scholars have developed important understandings of the exclusion of citizens living in vulnerable circumstances from portal design, other academic efforts have profoundly shaped daily practices of portal development. Diane Forsythe would likely have taken up this discrepancy as a challenge by finding ways to translate these insights into mainstream systems design.

Patient and Clinician Decision Support to Increase Genetic Counseling for Hereditary Breast and Ovarian Cancer Syndrome in Primary Care

“… 79 , 80 , 81 , 82 , 83 , 84 In our study, we did not observe any racial and ethnic differences in genetic testing uptake, suggesting that DAs designed to be accessible to diverse populations and their clinicians play a role in ensuring equity of access among women eligible for HBOC genetic testing. 85 …”

Development of a Mobile App to Support Self-management of Anxiety and Depression in African American Women: Usability Study

“…A one-size-fits-all approach to designing mHealth interventions may lead to more options but continued disparity in receiving mental health care. The inequitable design of digital health tools further perpetuates the exclusion of underserved populations from mental health care [ 48 ]. Incorporating recommendations from intended users and knowledge of their technology use and behaviors can help mitigate potential intervention-generated inequalities [ 49 ].…”

The Role of Formative Evaluation in Promoting Digitally-based Health Equity and Reducing Bias for Resilient Health Systems: The Case of Patient Portals

“…This may partly be due to system developers not prioritising equity considerations early in the development process. Their primary concern tends to be making the system work in a context known to them before tailoring it to other contexts of use and various user needs [34,35].…”

“…The following paragraphs will discuss why and how existing evaluations of patient portals fail to pay sufficient attention to issues surrounding equity, literacy, and bias. Firstly, existing work tends to study populations that are already using systems and are generally considered the "worried well" [33], thereby excluding those that are not using or cannot use patient portals [34]. This results in a selection ways to address them [44].…”

“…In relation to patient portals, these may include, for instance, patients with high numbers of comorbidities, older demographics, and people with chronic conditions. In doing so, the current focus of portal designers needs to shift from generic uses towards mapping the needs of the most vulnerable users as a full spectrum of use cases [34]. Changes may be relatively simple, including for example, addressing language and accessibility needs by making tools available in different languages and by providing audio-visual formats as alternatives to written text [54].…”