Diversity, equity, and inclusion matter for biomedical and health informatics

In the first issue of 2024, the 4 editors of the Journal of the American Medical Association (JAMIA) over its first 30 years, delineated an additional goal for JAMIA which is to: exemplify best practices in publishing to advance health equity and justice through promoting (1) diversity, equity, and inclusion in editorial team and processes; (2) use of inclusive and non-stigmatizing language; and (3) innovative, rigorous, and transparent quantitative and qualitative research methods that address fairness and mitigate epistemic injustice.¹ In support of this goal, in this editorial, I highlight 2 review papers focused on equity related to digital health tools,^2,3 a perspective from the American Medical Informatics Association’s (AMIA) Global Health Informatics Working Group focused on equitable and representative academic partnerships in global health informatics research,⁴ a paper that examines the role of the patient trust in artificial intelligence (AI),⁵ and a perspective from the AMIA Climate, Health, and Informatics Working Group that includes examination of the association between climate change and social vulnerability.⁶

Kim and Backonja² conducted a scoping review to identify and describe published frameworks and concepts relevant to digital health equity—the opportunity for all to engage with digital health tools to support good health outcomes—interventions. Using the socio-ecological model to inform the analysis, they identified 243 concepts from 42 frameworks using grouped into 43 categories that included characteristics of individuals, communities, and organizations; societal context; perceived intervention value and impacts on individuals, community members, and the organization; partnerships; and access to digital health services, in-person services, digital services, and data and information. Based on their analysis, the authors suggest a consolidated definition of digital health equity as “a multi-level socio-ecological concept that results from fair and just opportunities for everyone to attain their highest level of health through access to technology-enabled health resources and services.”

Arthur et al³ examined the equity implications of extended reality (XR) technologies for health and procedural anxiety through a systematic review. They extracted equity-relevant data from reviews of patient-directed XR technologies for health and procedural anxiety and deductively categorized data along multiple axes: (1) review-level or within-review extraction; (2) equity-relevant characteristics; (3) whether statements relate to availability, accessibility, or acceptability of relevant XR interventions; and (4) whether statements relate to availability, accessibility, or acceptability of the health or procedural contexts linked to XR interventions. Subsequently, they developed a novel implementation-focused framework. The “double jeopardy, common impact” framework outlines unique pathways through which XR technologies could help address health disparities but also have the potential to accelerate or even generate inequity across different systems, communities, and individuals. Given the latter concern, the authors emphasize the need for taking a cautious, inclusive approach to XR implementation in future programs.

Campbell et al⁴ report on principles and implementation strategies for equitable and representative academic partnerships in global health informatics research. The foundation for the principles was a workshop organized by the AMIA Global Health Informatics Working Group, at the 2023 AMIA Annual Symposium that included the presentation of 5 case studies reflecting incorporating principles of health equity into projects in low-and-middle-income countries and with Indigenous communities in the United States. This was followed by focus group discussions. The 5 core principles are: (1) inclusion and participation in ethical, sustainable collaborations; (2) engaging community-based participatory research approaches; (3) stakeholder engagement; (4) scalability and sustainability; and (5) representation in knowledge creation. The authors concluded that “equitable, sustainable, and scalable global health informatics projects require intentional integration of community and stakeholder perspectives in project development, implementation, and knowledge creation processes.”

Nong and Ji⁵ surveyed a cross-sectional national sample of US adults (n = 2039) and applied population weights to produced national estimates of patient expectations of healthcare AI. Almost 20% of patients expected AI to improve their relationship with their doctor and to increase affordability of health care, while 30% expected it to improve their access to care. They also found that trust in providers and the healthcare system is positively associated with expectations of AI controlling for demographic factors, general attitudes toward technology, and other healthcare-related variables. The authors also suggest that prioritization of patient benefits is important to preserving or promoting trust. However, the relationship between expectations of AI and trust in providers and the healthcare system raises concerns about health-disparate populations who may have lower trust in providers and healthcare systems.

Building on the findings of a mini-summit held during the AMIA 2023 Annual Symposium, Schleyer et al⁶ offer a call to action to the informatics community on its role in climate change. Hosted by the AMIA Climate, Health, and Informatics Working Group (at the time, an AMIA Discussion Forum), the International Medical Informatics Association (IMIA), the International Academy of Health Sciences Informatics (IAHSI), and the Regenstrief Institute, the mini-summit summit discussion was motived by 2 questions to participants: What evidence-based professional practices can individuals, groups, and organizations in healthcare apply or implement now to help mitigate or adapt to climate change? and What research should the informatics community conduct to help the healthcare profession mitigate or adapt to climate change? The resulting mini-summit action of “assess community vulnerability” is of particular relevance to the focus of this editorial. The associated implementation strategies included: (1) identify populations at increased risk from climate impacts, and (2) develop resource allocation plans based on social vulnerability indices. The mini-summit reflects an important step in helping the informatics community to set application and research priorities at the intersection of climate, health, and informatics.

As envisioned by our double issue focused on health equity in 2019⁷ and reflected in our recent focus issue on returning value from the All of Us Research Program, the topics of diversity, equity, and inclusion remain relevant to publishing in JAMIA and to advancing the science and application of biomedical and health informatics.⁸

Conflicts of interest

None declared.

Funding

None declared.

Data availability

Not applicable.

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