ArticleJournal of the American Medical Informatics Association : JAMIA2021
Persistent inequitable design and implementation of patient portals for users at the margins.
Article in Journal of the American Medical Informatics Association : JAMIA, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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Who cites it
17 citing papers in PubMed.
- Patient and Clinician Decision Support to Increase Genetic Counseling for Hereditary Breast and Ovarian Cancer Syndrome in Primary Care: A Cluster Randomized Clinical Trial.JAMA network open · 2022Trial
- The Motivations of Citizens to Attend an eHealth Course in the Public Library: Qualitative Interview Study.JMIR formative research · 2025Article
- Addressing health equity during design and implementation of health system reform initiatives: a scoping review and framework.International journal for equity in health · 2025Article
- Re-Envisioning Electronic Health Records to Optimize Patient-Centered Cancer Care, Quality, Surveillance, and Research.JCO oncology practice · 2025Article
- Differences in eHealth Access, Use, and Perceived Benefit Between Different Socioeconomic Groups in the Dutch Context: Secondary Cross-Sectional Study.JMIR formative research · 2025Article
- Moving beyond barriers: a mixed-method study to develop evidence-based strategies to improve implementation of PROMs in clinical oncology care.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Evaluating Expert-Layperson Agreement in Identifying Jargon Terms in Electronic Health Record Notes: Observational Study.Journal of medical Internet research · 2024Observational
- Socioeconomic and demographic patterning of family uptake of a paediatric electronic patient portal innovation.PLOS digital health · 2024Article
- Evaluating the Impact of a Dutch Sexual Health Intervention for Adolescents: Think-Aloud and Semistructured Interview Study.JMIR formative research · 2024Article
- The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents.Journal of participatory medicine · 2024Article
- Patterns of Health Portal Use by Regular Portal Users Among Patients With Cancer: Results From the UWCCC Survivorship Program.JCO clinical cancer informatics · 2023Article
- The impact of digital healthcare on vulnerable pregnant women: A review of the use of the MyCare app in the maternity department at a central London tertiary unit.Frontiers in digital health · 2023Article
- The value of community-integrated health information exchanges: three recent examples from El Paso, Texas.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- The Role of Formative Evaluation in Promoting Digitally-based Health Equity and Reducing Bias for Resilient Health Systems: The Case of Patient Portals.Yearbook of medical informatics · 2022Review
- Telehealth experiences of providers and patients who use augmentative and alternative communication.Journal of the American Medical Informatics Association : JAMIA · 2022Article
- Development of a Mobile App to Support Self-management of Anxiety and Depression in African American Women: Usability Study.JMIR formative research · 2021Article
- Building on Diana Forsythe's legacy: the value of human experience and context in biomedical and health informatics.Journal of the American Medical Informatics Association : JAMIA · 2021Article
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveDiane 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
methodsWe conducted semistructured interviews (n = 24) and questionnaires (n = 14) with portal designers, health professionals, and policy advisors.
resultsIn 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
conclusionAlthough 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.
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