Contextualizing key principles to promote a justice-oriented informatics research agenda: proceedings and reflections from an American Medical Informatics Association workshop

Abstract

Objectives

Advancing health through informatics requires attending to justice. Recent policy changes in the United States have introduced significant barriers to promoting justice within informatics due to targeted funding cuts and hostility to science, especially science that prioritizes justice.

Materials and Methods

We present five key principles for advancing a justice-oriented informatics agenda, synthesized from our workshop held at the American Medical Informatics Association 2022 Annual Symposium.

Results

These principles are: (1) Recognize knowledge and methodologies across communities; (2) Acknowledge historical and cultural contexts of interactions; (3) Facilitate transparency and accountability through clear measures and metrics; (4) Foster trust and sustainability; and (5) Equitably allocate compensation and resources.

Discussion and Conclusion

We discuss barriers to implementing these principles that have arisen since the 2022 workshop and provide recommendations for moving towards justice-oriented informatics. We offer examples of how these principles may be used to frame challenges and adapt to new barriers within BMI.

Introduction

Biomedical Informatics (BMI) is an interdisciplinary field that utilizes biomedical data, information, and knowledge to promote health and biomedical science.^1,2 Given the field’s expansive reach and sociocultural systemic interactions, BMI impacts numerous aspects of social and individual wellbeing.^3,4 While BMI research offers unique opportunities to improve health outcomes, it is necessary to attend to risks inherent in deploying technological interventions in biomedical settings.⁵ Crucially, to avoid exacerbating harm stemming from current and historic sources of oppression in healthcare and society, BMI requires that individuals and organizations carefully consider consequences and interactions by adopting a formalized justice-oriented lens.^6–8 For example, failure to consider the digital health divide can amplify intervention-generated inequalities in BMI.^9–11 Similarly, clinical decision support tools designed without accounting for biases in data collection or healthcare practices can exacerbate disparities in health outcomes.^12–14

Existing work in BMI has explored patterns of bias and inequality.^6,15–17 Such research often occurs under the banner of health equity, which has explicit ties to principles of justice.¹⁸ However, considering principles of justice to be synonymous with health equity research implicitly treats justice as an application area, rather than a core aspect of BMI research. This risks ignoring other facets of justice in favor of a narrower conceptualization of equity which prioritizes reacting to disparities^19,20 over interrogating the systems and structures which produce inequity.^21,22 Other frameworks have centered justice more broadly as a guiding principle^23–25 but are difficult to translate into practice.^26,27 Therefore, there is a need for frameworks that cross domains, consider the perspectives of multiple actors engaged in BMI research, and present an expansive vision of justice.

Justice is grounded in moral, ethical, and legal principles. The pursuit of justice may involve considering topics such as fairness, equality, and accountability to mitigate social inequities and may also be considered in individual relationships to ensure fair treatment, impartiality, and restoration.^28–30 We discuss the recommendations presented in this perspective in relation to several subdomains of justice, including distributive justice (equal distribution of burdens and benefits across society),³¹ procedural justice (fairness in decision-making processes),³² recognition justice (recognizing human dignity and right to equal treatment),³³ and epistemic justice (equal allocation of power when generating knowledge and ideas).³⁴ We broadly use the following definition of justice to motivate our work: the construction and maintenance of systems which allow for an equal realization of benefits, risks, and support among participants while remedying harm stemming from present and historic sources of oppression.

The Justice Informatics Collaborative (JIC) was started by graduate students at Columbia University’s Department of BMI in Summer 2020 following the murders of George Floyd and Breonna Taylor and the resulting surge in the Black Lives Matter movement. The JIC originated as a space to explore systems of oppression, exclusion, and privilege. Its goal is to interrogate the sociopolitical and historical context around research by engaging in conversations that may otherwise not be encouraged in academic settings. In November 2022, JIC facilitated a workshop at the American Medical Informatics Association (AMIA) Annual Symposium, where attendees discussed their experiences implementing justice-oriented practices in research and pedagogy. The prevailing sentiment during this workshop was that many institutions that attendees engaged with were interested in promoting justice but lacked the tools to translate that interest into action. Since then, the landscape for incorporating justice-oriented practices in research and education has changed drastically. Despite the well-documented benefits of incorporating values like diversity, representation, and health equity in research,^35–37 the current United States presidential administration has enacted sweeping rules and executive orders attempting to stymie such work,^38–40 resulting in loss of funding, fear, and instability for researchers.^41,42

In this perspective, we share five principles of justice-oriented BMI research and illustrate these principles with example recommendations. Both the principles and recommendations were synthesized from discussions at the 2022 workshop. We then discuss new challenges for implementation of the principles that have surfaced in the past year and propose recommendations to face these obstacles.

Workshop organization

The JIC organized a full-day workshop, titled A Workshop for Building a Research Agenda for Justice Informatics, at AMIA’s 2022 Annual Symposium in Washington, DC. The goal of this workshop was to bring together an interdisciplinary community of informaticians to (1) ideate and develop actionable agendas for areas of justice-oriented informatics practice and (2) collaboratively develop a toolkit to guide future justice-oriented informatics research.

Prior to the workshop, the JIC constructed six sociotechnical domains (Figure 1) through a synthesis of literature and discussion. The JIC then created an online discussion forum to understand how the community conceptualizes justice within BMI. Prompts included: What does justice mean? What does justice-oriented research look like to you? How does justice manifest in your work? What resources could facilitate JI-oriented work in your field? The forum also invited feedback on the sociotechnical domains.

Figure 1.

The six justice informatics domains elaborated on and discussed in the workshop. In the Scholarship domain, citational justice is a concept which acknowledges inequity in who and what is cited as an authoritative source.⁴³ In the Operations & Applications domain, techno-solutionism/techno-determinism refers to advancing algorithmic or technological solutions as the primary approach to problems, often in a way that masks the need for more nuanced or multifaceted solutions.⁴⁴ In the Scholarship domain, Indigenous ways of knowing refers to the systems of knowledge and teaching put forth within indigenous communities.⁴⁵

The workshop was open to all Symposium attendees, yielding broad representation across academic institutions, research areas, and professional levels; there were 26 attendees at the workshop. A positionality exercise⁴⁶ revealed that one in 10 workshop participants identified as men, half disclosed a disability, and four in five identified as “American.” Over half disclosed having experiences with housing instability and social or academic discrimination due to their marginalized identity. Finally, over two-thirds of workshop participants reported having conducted research on communities where they are not members.

The workshop included a keynote by Dr Tiffani J. Bright and a series of small-group discussions organized by sociotechnical domains (Figure 1). They reflect areas where prior work has suggested justice-oriented practices can be better incorporated. Core workshop activities started with brainstorming, where attendees populated whiteboards with sticky notes containing examples of gaps, challenges, and resources specific to the corresponding domain. To seed discussions, JIC facilitators included online discussion board comments made prior to the workshop on the whiteboards. Attendees then participated in 75-minute breakout discussions, where they reflected on the populated whiteboards to discuss: (1) Where are we [with regards to justice in this domain] right now? What are we doing well, and what are the gaps?; (2) Where do we want to be in the next 2 years?; (3) How do we build the infrastructure, resources, and skills to get us there? These three sets of questions were discussed in each domain-specific small group, and results of the domain-specific discussions were shared with the larger group. See Supplement for workshop materials.

After the workshop, JIC members (A.K., C.A., E.C., P.D., S.G., B.M., O.B.D.W., A.P.) summarized recorded conversations and distilled them down to five key principles, presented below (Figure 2, Table 1). The workshop organizers obtained consent to record conversations but refrain from including quotations to protect the privacy of workshop participants. After synthesizing the principles, we conducted a member check and solicited feedback from workshop participants who left their contact information.

Figure 2.

Graphical overview of the five justice informatics principles, described in detail in the Workshop Proceedings and Table 2.

Table 1.

Justice informatics principles with descriptions and examples.

Principle	Description	Recommendations
1—Recognize knowledge, expertise, and methodologies across communities and domains	BMI researchers should recognize that communities are equipped to identify problems and design solutions for issues that affect them. BMI research should prioritize approaches to share knowledge between communities and research institutions, utilizing epistemologies beyond Western approaches and emphasizing fields with a strong history of justice. This principle relates to epistemic justice.34 Examples of recent BMI work that apply Principle 1 include.47,48	Prioritize research that includes Indigenous scientific practices and knowledge systems, qualitative and mixed methods, and methods from fields such as sociology, anthropology, and social work Incorporate community perspectives into research, including co-design and co-productive research.49 These methods enable community members to identify problems and design solutions alongside researchers Frameworks like the CARE Principles for Indigenous Data Governance50 enable researchers to collect and represent knowledge in ways that align with community values
2—Acknowledge and address historical and cultural contexts of interactions within research and medicine	To support those not empowered by biomedical research institutions, historical injustice must be acknowledged and addressed in research practices, community engagement, and institutional support for researchers. This principle operationalizes notions of recognition justice.33 Examples of recent BMI work that apply Principle 2 include.51,52	Increased financial support and mentorship for first-generation students and junior researchers Change curricula to focus on how ethics and fairness can be integrated in all types of research, rather than teaching these ideas in isolation Leverage research practices that center currently and historically under-represented groups, including critical race theory, feminist theory, and disability justice Develop practices to mediate between design requirements for designers and users of technology
3—Facilitate transparency and accountability through use of clear measures and metrics	Processes for self-reflexivity and research critique must be developed to assess whether research and institutional policies further justice-oriented goals. Accountability involves setting clear and achievable goals, defining metrics for success, tracking progress, achievements, and setbacks, and explicitly communicating these goals. This principle relates to the role of accountability in relational ethics.53,54 Examples of recent BMI work that apply Principle 3 include.55,56	Standardized reporting for justice and ethics-related metrics including: Datasheets for Datasets,57 the Health Equity Report Card,58 AMSA scorecard for conflict of interest policies,59 and Good Pharma Scorecard60 Rapidly changing practices and policies in BMI-related fields (particularly data privacy and machine learning) mean that metrics for assessing BMI work should be flexible and adaptable Incentivize institutions to publicize progress towards goals around increased diversity, support, and inclusion in hiring and recruitment
4—Foster trust and sustainability	Research methods must be developed with safety measures in place to prioritize long-term community partnerships and support researchers who may experience harm because their research has implications for their own community. Furthermore, guidelines and policies should be able to adapt to changing policies, capabilities, and conventions within healthcare, language, and technology. This principle relates to the need to remedy harm stemming from present and historic sources of oppression, as stated in our overarching definition of justice. Examples of recent BMI work that apply Principle 4 include.61,62	Utilize member checks63  to validate research findings and build trust with community members who have first-hand expertise Implement adequate safeguards for data collection, privacy, and storage, especially when interfacing with reproductive and transgender healthcare or other areas that are the target of criminalization. Support creation of community-based research review boards to allow community members more autonomy over research.64 Implement trauma-informed care policies to mitigate unequal burdens of responsibility on researchers from marginalized communities who engage with their own communities.65
5—Equitably allocate compensation and resources	Justice-oriented research and service work should be recognized through monetary and social compensation. Similarly, community and grassroots organizations should receive institutional support. Redefining compensation is a way for institutions to recognize the power and social capital of community partners. This principle relates to distributive justice.31 Examples of recent work related to Principle 5 include.66–68	Implement equitable financial compensation for individuals who would otherwise be excluded from participating in research Reward commitment to justice with social and professional capital (eg, during consideration for tenure) Identify financial resources for underfunded, grassroots organizations doing critical work in communities, for example, submitting grants that can address community needs and designing budgets congruent with a community organization’s mission

Recommendations in the table were brought up by attendees during the workshop.

Workshop proceedings

We identified five major principles for fostering justice within BMI research (Table 1). These principles are designed to be applicable to multiple parties within BMI. In addition to research applications, we consider funding structures, institutional culture, mentorship, teaching practices, and public outreach.

Principle 1—recognize knowledge, expertise, and methodologies across communities and domains

During discussions of how their research benefits from integrating knowledge from other disciplines, attendees highlighted methods from social sciences and co-productive technology design (Table 1). While the value of interdisciplinary research is broadly recognized within BMI,⁶⁹ workshop conversations suggested that perspectives and sources of knowledge not commonly represented within BMI should be identified and centered. In this way, we conceptualize Principle 1 as an extension of epistemic justice, which is defined as the equal allocation of the power to generate knowledge and ideas.³⁴ Epistemic justice has been discussed within BMI during considerations of what counts as knowledge, which knowledge systems are prioritized, and how to rank knowledge from different academic disciplines.^70,71 We believe that by prioritizing epistemic justice, particularly when selecting and motivating research problems, researchers can improve their understanding and operationalization of the benefits, risks, and support of our research.

Principle 2—acknowledge and address historical and cultural contexts of interactions within research and medicine

Recommendations under Principle 2 focus on expanding historical and cultural awareness in multiple facets of BMI. Attendees recommended improved support, education, and mentorship for first-generation students and researchers from marginalized backgrounds; we emphasize the importance of cultural humility, a practice characterized by critical self-reflection of how we understand people in the context of their culture and personal history while challenging structural power imbalances to strengthen respectful partnerships.⁷² The concept of cultural humility is additionally critical during the research process to ensure research questions are aligned with community concerns. This principle aims to operationalize recognition justice, which appreciates human dignity with an emphasis on people who are marginalized.³³ It also relates to prior frameworks, for example, PRAXIS,²⁵ which emphasize the importance of identifying the context in which BMI work is embedded to improve the efficacy of interventions.

Principle 3—facilitate transparency and accountability through use of clear measures and metrics

The use of well-defined metrics and validated measurement instruments is a cornerstone of BMI⁷³—workshop participants called for a similarly principled approach for justice. Such objectives should measure equity, accountability, and accessibility with uniform definitions. Our principle applies to metrics within research (eg, measurements of participant diversity or model disparities) and within institutions more broadly (eg, measuring progress towards goals like community outreach and diverse hiring practices). Because accountability can be nebulous and difficult to track, success should be defined in collaboration with multiple parties. Principle 3 emphasizes the importance of holding people and institutions accountable to commitments of justice, an idea especially pertinent to indigenous frameworks of relational ethics.^53,54

Principle 4—foster trust and sustainability

Rebuilding institutional trust is fundamental to developing mutually beneficial relationships between communities and individuals from which scalable and sustainable institutional collaborations develop. Researchers and institutions should consider ways to include community members, including in ways that do not center academic structures.⁷⁴ When considering research more broadly, we advocate for flexible policies and procedures that can evolve alongside ever-changing best practices in BMI. For example, attendees discussed avenues to update medical terminologies and other linguistic standards to reflect evolving language. Principle 4 is especially important situated against the history of biomedical research, where unethical human experimentation has disproportionately impacted Black, Indigenous, Jewish, and disabled individuals.^75–78 We find that fostering trust and sustainability is required to remedy harm stemming from present and historic sources of oppression, as stated in our overarching definition of justice.

Principle 5—equitably allocate compensation and resources

During workshop discussions, attendees identified increased compensation and resources for individuals and institutions committed to justice as a crucial step to sustainably increasing the amount of justice-oriented BMI research being conducted. We emphasize the importance of appropriate compensation for community members and organizations involved in research in addition to academic researchers. Financial compensation may be intra-institutional, with support from leadership, or inter-institutional, with funding from organizations incentivizing justice-oriented research. Justice-oriented work may be resourced through means other than monetary support, such as elevating researchers committed to such work to non-symbolic positions of leadership where they are able to enact legitimate change. Principle 5 closely relates to distributive justice by recognizing how resource allocation may allow for equal realization of benefits and support.³¹

Emerging challenges and additional reflections

In the workshop, attendees identified pathways to conducting justice-oriented work, although they noted that many institutions were hesitant to provide meaningful support. However, recent shifts in policy, funding, and institutional priorities have enacted barriers to dampen this momentum. We highlight these barriers in Table 2. While these barriers took form after the workshop occurred, participants discussed several recommendations applicable to these new challenges.

Table 2.

Emerging challenges for implementing justice-oriented informatics principles.

Challenge	Principles affected	Examples
Pressure to alter research practices	Principle 1: Recognizing knowledge and expertise across communities requires diverse collaborations that may be perceived as unsafe in the current political climate Principle 2: Acknowledging historical and cultural contexts requires grappling with structures of social oppression	Researchers are encouraged to omit a growing list of words (including “diversity,” “cultural differences,” and “social vulnerability”) from their grants in order to prevent their work from being flagged for review.79 A Senate committee released a database of “woke DEI grants” and requested increased scrutiny of these research initiatives.80 An August 2025 Executive Order permits political officers to cancel federal grants that are not “consistent with agency priorities”.81
Expanded stigmatization and surveillance	Principle 4: Increasing surveillance and stigmatization based on various factors (eg, immigration, reproductive health, gender nonconformity) stymies trust and sustainability, as individuals may not feel safe to participate in research (both as researchers and as research participants)	Multiple states are putting forth legislation to lower accessibility of reproductive care and/or to ban abortions outright.82 Several cases currently on the Supreme Court docket have far-reaching impacts for transgender people, including access to passports.83 ICE is expanding its use of surveillance technology, potentially violating the first amendment rights of millions of immigrants.84,85
Individual harms	Principle 2: Individuals who have historically faced barriers to participation in science and medicine are disproportionately harmed within the current political system Principle 4: Building sustained community is difficult when people are worried about individual harm	ICE is unpredictably and violently abducting people with impunity86; multiple people have died in immigration detention.87 The 2025 Budget Reconciliation Act could strip up to 15 million people of their health insurance over the next 10 years and will result in extensive hospital closures, particularly in rural America.88
Dismantling of administrative oversight structures	Principle 3: Shuttering governmental initiatives responsible for collecting and sharing data related to health and health equity renders data-driven transparency and accountability impossible	At the CDC, the team responsible for planning the National Health and Nutrition Examination Survey (NHANES) has been fired.89 FDA teams responsible for food and drug safety have also been laid off.90,91
Budget cuts	Principle 5: Both targeted and non-targeted budget cuts materially reduce the amount of funding available for justice-focused BMI work	Close to $2 billion in NIH research grants have been cancelled in the past year.92 The proposed 2026 FY budget calls for a 39% cut to the NIH.93 The NIH has threatened to withhold grants from colleges with DEI programs.94

This is a non-exhaustive, illustrative list of challenges identified focused on events noted by JIC members.

As highlighted in principle 1, attendees repeatedly discussed the need to invest in relationships with groups outside of academia including think tanks, patient communities, and industry representatives. Such partnerships could help address current pressures to alter research practices and budget cuts.

Additionally, workshop participants discussed improving support structures, particularly for researchers who experience societal and institutional barriers to success (Principle 2). Participants highlighted the difficulty of navigating sociopolitical oppression while continuing their own work. Considering individual harms enacted by current policies, we believe it is important for individuals to consider how political factors may be a stressor for others and how they might mitigate such effects. At an institutional level, additional monetary and non-monetary support (eg, legal aid, institution-led lawsuits, flexible work policies) should be provided to individuals vulnerable to harm.

Discussions explicitly named the ever-changing landscape around reproductive rights and transgender healthcare during the workshop—particularly the fear of stigma and surveillance that may stop people from participating in research. Participants identified that research must be adaptable to evolving requirements, centering privacy safeguards when working with people who experience heightened surveillance.

The challenges outlined in Table 2 have led to decreased institutional support, shifting priorities, and self-censorship among groups conducting work based on justice principles. A recent example of self-censorship occurred when AMIA’s Diversity, Equity, and Inclusion Committee renamed itself the Empowerment, Engagement, and Representation Committee. This change allowed the committee’s work to continue, illustrating the importance of sustainability in Principle 4. However, conflicting with Principle 2, this change distances the committee from its anti-racism commitment, a key motivation of the group’s formation in response to the 2020 surge in the Black Lives Matter movement. It also reduced community trust (Principle 4) and alienated members with relevant expertise (Principle 1). Our goal is not to criticize or defend the change but to provide an example for how principles from the framework such as transparency, shared decision-making, and accountability can guide assessment and ongoing evaluation. Recognizing these implications can help uphold commitments to justice by aiding in setting clear scope, establishing measurable equity goals, and publicly sharing progress.

Notably absent from our workshop were men, white people, and senior academics, which may introduce selection bias. More broadly, workshop participants were disproportionately people who had directly experienced or observed sociopolitical structures of injustice. This trend is widely present in justice-oriented work,^95,96 and points to a burden on potentially vulnerable and marginalized people to address the structures causing that marginalization. At the same time, most participants identified as “American,” indicating a lack of global perspectives. Recent AMIA workshops have integrated international viewpoints to propose directions for sustainable, equity-driven informatics research globally.⁹⁷

Such efforts form a collaborative geographic network for informatics researchers to share expertise in advancing justice-centered approaches in BMI research. In the future, the JIC plans to hold discussions with other informatics researchers about the implications of the current sociopolitical context on the Justice Informatics principles.

Conclusion

Historically, engagement with justice within BMI has focused on specific methods and application areas. We build on this important work to define a set of principles that BMI professionals can use as a lens for critically engaging with BMI research across roles and domains. These principles also provide directions for creating a culture of justice within BMI through improved training, pedagogy, and funding practices. Despite recent obstacles to conducting justice-oriented work, we emphasize that the principles articulated during the workshop are still both relevant and necessary for conducting BMI research that adequately addresses health needs. Given immediate threats to individual health and well-being, we call on the informatics community to prioritize the safety of our most vulnerable community members. In the longer term, we advocate for collaboration across institutions and communities to determine how to fund and conduct justice-oriented research moving forward.

Author contributions

Aparajita Kashyap (Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Christopher J. Allsman (Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Elizabeth A. Campbell (Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Pooja Desai (Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Salvatore G. Volpe (Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Writing—original draft, Writing—review & editing), Bria P. Massey (Conceptualization, Data curation, Investigation, Methodology), Tiffani J. Bright (Resources, Writing—review & editing), Suzanne Bakken (Methodology, Supervision, Writing—review & editing), Oliver J. Bear Don’t Walk IV (Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Supervision, Writing—original draft, Writing—review & editing), and Adrienne Pichon (Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Supervision, Writing—original draft, Writing—review & editing)

Supplementary material

Supplementary material is available at Journal of the American Medical Informatics Association online.

Funding

This research had no specific source of funding. A.K., E.C., P.D., O.B.D.W., and A.P. were supported by the National Library of Medicine (T15LM007079). O.B.D.W. was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number R35HG011319, D.E.I.A. Supplement to support the Precision health & genomics: Indigenous Mentoring & Ethics (PrIME) program. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflicts of interest

The authors have no competing interests associated with this work.

Data availability

Data cannot be shared due to concerns for workshop attendee privacy.