About

Rupa S. Valdez is a Professor of Systems and Information Engineering and a Professor of Public Health Sciences at the University of Virginia School of Engineering and Applied Science. Her research focuses on understanding and designing solutions to support the ways in which people manage health at home and in the community. She draws on methods from multiple disciplines including human factors engineering, cultural anthropology, and health informatics. Her work encompasses participatory and co-design approaches and attends to the ways social networks, physical environment, community resources, and information technology shape patient experiences. Professor Valdez is interested in how health is managed across various populations, including low wealth communities, rural communities, communities of color, and the disability community. She also has a research interest in methodological development for research and teaching in this space. Her contributions include testifying before Congress, serving as an Associate Editor for Ergonomics and the Journal of American Medical Informatics Association Open, and serving on the Board of Directors for the American Association of People with Disabilities. Additionally, she serves in advisory capacities for the Agency for Healthcare Research and Quality, the National Committee for Quality Assurance, and the National Academy of Science, Engineering, and Medicine. She is the founder and president of the Blue Trunk Foundation.

Research topics

• Political Science
• Medicine
• Computer Science
• Systems engineering
• Engineering
• Management science
• Physical medicine and rehabilitation
• Medical education
• Nursing

Selected publications

• Developing and Validating Measures of Structural Ableism to Improve Health Outcomes for the Disability Community: Protocol for a Mixed Methods Study

  JMIR Research Protocols · 2026-03-13

  articleOpen access1st authorCorresponding

  BACKGROUND: Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequalities faced by the disability community. Unlike other forms of structural oppression, there are currently no adequate measurements for structural ableism and its impacts. Therefore, a necessary first step to addressing health inequities that impact the disability community is to create validated measures of structural ableism. OBJECTIVE: This paper outlines the methods of an ongoing project that aims to develop and validate measures of structural ableism. The resulting measures will facilitate the identification of relationships between structural ableism and health outcomes at both an individual and community level. METHODS: This project will take place across 3 phases. In Phase I, we will characterize the multiple factors that comprise the construct of structural ableism. We will begin by analyzing texts that discuss historical events, ideologies, and the lived experiences of disabled people to inform our understanding of contemporary dimensions of structural ableism. Simultaneously, key informant interviews with advocates and activists from the disability rights and disability justice movements will be conducted to further characterize the dimensions of structural ableism. In Phase II, the findings of Phase I will be used to inform the creation of an individual-level measure of structural ableism. Phase III will result in community-level measures of structural ableism, which will be developed using community-engagement studios with members of the disability community and publicly available datasets. This phase will build on the findings of the first 2 phases. Our methods purposefully include disabled people across all phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (eg, race and ethnicity, gender identity, geographic location, and other identities and demographics). Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, a diverse advisory committee of disabled activists, advocates, and scholars, as well as researchers with expertise in developing measures of structural oppression, such as structural racism. RESULTS: This project was funded in August of 2024. As of October 2025, our team has read more than 50 texts as part of our historical and policy analysis of the factors that characterize structural ableism. We plan to complete our characterization of structural ableism in the spring of 2026, with individual-level measures of structural ableism being developed by the Winter of 2028 and community-level measures created by the Winter of 2029. CONCLUSIONS: The measures developed by this work will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be cocreated with the disability community. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/86976.

  PublisherDOI

• A Practical Guide for Forming a Lived Experience Panel: A Partner-Driven Maximum Variance Sampling Approach (Preprint)

  2026-03-20

  articleOpen accessSenior author

  <sec> <title>UNSTRUCTURED</title> Research projects that are conducted in collaboration with patients and caregivers are more rigorous, relevant, and impactful within the communities of focus. One mechanism for facilitating patient and caregiver engagement in research is through a Lived Experience Panel (LEP) – an intentionally assembled group of people with personal experience relevant to the research topic. LEPs can engage in any or all aspects of the research project, from study ideation to participant recruitment to dissemination and translation of findings. Fully realizing the potential of an LEP to inform the research process requires intentionality in LEP composition, as members should be aligned with the range of lived experience in the community of focus. Mechanisms to recruit patient or caregiver advisors for research may require researchers to reach beyond pre-existing relationships if they intend to achieve maximum variability. However, explicit processes for forming a maximally variable LEP are scarce. In the present guide, we outline an LEP formation process that includes laying the foundation for recruitment with academic and community partners; collaboratively developing promotional materials and an interest survey; using community-embedded promotional channels to share about the LEP opportunity; and selecting interviewees and LEP invitees using a process called maximum variance sampling. Outcomes of our LEP formation process include the relative productivity of each promotional channel, the specific timeline from LEP ideation to formation, the sociodemographic variability of our applicants, and real LEP members' feedback on the formation process. We conclude by highlighting what we perceive as keys to success, including collaboration with trusted community partners and a thoughtfully designed interest survey that enabled us to narrow a large applicant pool to a diverse set of invitees. We also describe challenges and lessons learned, including opportunities to better articulate LEP responsibilities during interviews and ways to navigate the tensions inherent in selecting members based on maximum variance. Researchers are encouraged to invest time and resources into building relationships with community partners, knowing that these relationships lay the groundwork for reaching diverse patients and caregivers to advise research. </sec>

  PublisherDOI

• A Practical Guide for Forming a Lived Experience Panel: A Partner-Driven Maximum Variance Sampling Approach (Preprint)

  Journal of Participatory Medicine · 2026-03-20

  articleOpen accessSenior author
  PublisherDOI

• Self-perceived Ability to Understand Speech does not Influence CRC Screening Adherence Among Sign Language Users

  Journal of Cancer Education · 2026-01-26 · 1 citations

  articleOpen access

  Early detection of colorectal cancer (CRC) through screening improves survival and reduces mortality, yet adherence is shaped by education and communication barriers. Such systemic barriers are relevant for the deaf, deafblind, and hard of hearing (DDBHH) population using American Sign Language (ASL). While educational attainment is closely linked to cancer screening, less is understood about whether an individual's self-perceived ability to communicate in spoken language settings influences screening behavior. In this study, we examine 'functional hearing ability,' defined as a person's self-perception of their ability to understand what someone says in a quiet room, and its relationship to CRC screening adherence. Using the National Cancer Institute's Health Information National Trends Survey in ASL and U.S. Preventive Services Task Force (USPSTF) CRC screening guidelines, we surveyed 600 ASL-using adults from July 2023 to June 2025. Multivariable logistic regression tested associations between self-perceived ability to understand spoken language in a quiet room (understand well vs. cannot understand well in a quiet room) and screening adherence, adjusting for age, education, their interaction, race, and marital status. Significance was set at p ≤ 0.05. Functional hearing ability was not significantly associated with CRC screening [OR 0.86 (95% CI: 0.58-1.27); p = 0.44]. However, the interaction between age and education remained significant (p = 0.04). College graduates were more likely to follow screening guidelines compared to non-graduates, though this benefit diminished with age [age 45-54: OR 2.47 (1.30-4.70); 55-64: OR 1.25 (0.72-2.17); 65-74: OR 0.75 (0.39-1.46)]. Hispanic [OR 0.80 (0.53-1.19)] and Other races [OR 0.50 (0.31-0.80)] were also less likely to be screened than White participants (p = 0.02). Findings suggest functional hearing ability, defined as perceived ability to understand a speaker in a quiet room, alone does not predict screening adherence. Addressing educational disparities, through ASL-fluent community health workers or patient navigators, may improve increasing CRC screening rates in the DDBHH community.

  PublisherOA PDFDOI

• Innovative Approaches to Increase the Engagement of Populations That Experience Health Disparities in Human Factors and Ergonomics Research

  Proceedings of the Human Factors and Ergonomics Society Annual Meeting · 2025-08-22

  article

  The discipline of human factors and ergonomics (HFE) continues to expand its reach in the (re)design of healthcare systems, processes, products, and interventions. However, many individuals across a range of demographic characteristics continue to face significant health disparities and are underrepresented in the HFE research studies they would benefit from. HFE experts must turn their attention toward the representation of populations that experience health disparities in human factors research in health care. This panel will discuss best practices to engage these patient populations in the development of targeted interventions, opportunities for patient ergonomics to reduce barriers to health research participation, the utility of community engagement studios toward the design of HFE research studies, and human-centered protocols to engage D/deaf participants in participatory co-design sessions. After, the audience will be invited to participate in a 30-minute moderated session to discuss how HFE researchers can effectively and meaningfully partner with such populations.

  PublisherDOI

• A Call for Integrated Approaches in Digital Technology Design for Aging and Disability

  The Gerontologist · 2025-03-22 · 6 citations

  reviewOpen access

  The fields of aging and disability often proceed as 2 distinct lines of inquiry and action in terms of digital technology design. Guidelines and standards in both spaces (e.g., web content accessibility guidelines) have had suboptimal impact due to limited comprehensiveness enforcement mechanisms. Standards also rarely account for variations within the disability and aging communities and the structural power of ageism and ableism. These concerns proliferate in the context of contemporary technology discourse (e.g., data privacy, generative artificial intelligence). There is an opportunity to bridge both fields given that aging and disability can lead to distinct but overlapping experiences and technological needs and because of the multiple ways aging and disability may be simultaneously experienced. Joint efforts are essential to building the political power necessary to address current limitations and associated harms and to mitigate the risk of exacerbation associated with increasing technological pervasiveness and complexity. Joint efforts can also catalyze a paradigm shift from designing to address "deficits" to designs that are responsive to assets and the context of older adults' and disabled persons' full personhood. This paper reviews best practices for digital technology design across aging and disability fields and presents pathways forward toward comprehensive, enforceable standards.

  PublisherOA PDFDOI

• Defining Value in Population Health: Evaluating Program Impact and Outcomes

  2025-05-02

  articleSenior author

  The University of Virginia (UVA) Health’s Population Health Department advances health equity by expanding access to patient-centered care and improving health outcomes. One of their programs, Interactive Home Monitoring (IHM), provides follow-up care for patients discharged from the UVA Medical Center through remote patient monitoring protocols, proactive care coordination strategies, and patient engagement practices. This paper aims to inform quality improvement for IHM by understanding the value of the program through currently collected metrics (e.g. readmissions, emergency department visits, length of stay) and through creating a more holistic understanding of value from multiple stakeholder perspectives. Defining and demonstrating the value of IHM is currently challenging due to the ambiguous nature of value and limitations in data collection and reporting, including data integration and capturing patient perspectives. This paper evaluates IHM’s effectiveness using statistical methods to compare outcomes between enrolled patients and those eligible but not enrolled. This addresses the challenges posed by limited data collection and reporting in defining and demonstrating program value. Through qualitative content analysis of interview notes and Mann-Whitney tests of datasets on the Locus platform, we define value for IHM. The findings aim to establish a framework for defining and assessing value in population health programs, aligning stakeholder priorities with program outcomes. This analysis provides actionable insights to enhance program effectiveness and measure value and could be used as a framework for similar population health programs.

  PublisherDOI

• Dismantling Discrimination in Healthcare Research and Practice Through Human Factors Approaches

  Proceedings of the Human Factors and Ergonomics Society Annual Meeting · 2025-09-01

  article

  The discipline of human factors and ergonomics (HFE) has demonstrated the utility of human factors approaches in improving safety outcomes for both patients and healthcare professionals. However, many patients and health professionals continue to face discrimination in both health research and practice. This panel aims to promote positive outcomes through the design of just health systems by first dismantling discrimination in HFE-related health research and health practice. Toward this objective, expert panelists in HFE will present on topics spanning medical equipment design, concrete strategies to dismantle bias in HFE-related health research design, human factors approaches to characterize racial/ethnic disparities in maternal care, and system contributors to psychological harm of transgender and non-binary people. After, we will hold a moderated discussion about the challenges, opportunities, and responsibilities of HFE practitioners to design healthcare and health research that improves patient outcomes for all and expands who can be a health professional.

  PublisherDOI

• Developing and Validating Measures of Structural Ableism to Improve Health Outcomes for the Disability Community: Protocol for a Mixed Methods Study (Preprint)

  2025-11-02

  articleOpen access1st authorCorresponding

  <sec> <title>BACKGROUND</title> Structural ableism, defined as the processes, policies, and institutions that privilege able-bodied people over disabled people, is a root cause of health inequalities faced by the disability community. Unlike other forms of structural oppression, there are currently no adequate measurements for structural ableism and its impacts. Therefore, a necessary first step to addressing health inequities that impact the disability community is to create validated measures of structural ableism. </sec> <sec> <title>OBJECTIVE</title> This paper outlines the methods of an ongoing project that aims to develop and validate measures of structural ableism. The resulting measures will facilitate the identification of relationships between structural ableism and health outcomes at both an individual and community level. </sec> <sec> <title>METHODS</title> This project will take place across 3 phases. In Phase I, we will characterize the multiple factors that comprise the construct of structural ableism. We will begin by analyzing texts that discuss historical events, ideologies, and the lived experiences of disabled people to inform our understanding of contemporary dimensions of structural ableism. Simultaneously, key informant interviews with advocates and activists from the disability rights and disability justice movements will be conducted to further characterize the dimensions of structural ableism. In Phase II, the findings of Phase I will be used to inform the creation of an individual-level measure of structural ableism. Phase III will result in community-level measures of structural ableism, which will be developed using community-engagement studios with members of the disability community and publicly available datasets. This phase will build on the findings of the first 2 phases. Our methods purposefully include disabled people across all phases of this work, with a focus on maximizing the diversity of disability perspectives by including people across disability types and intersecting identities (eg, race and ethnicity, gender identity, geographic location, and other identities and demographics). Most importantly, our approach is deeply community-informed, drawing on multiple community partnerships from local and national organizations, a diverse advisory committee of disabled activists, advocates, and scholars, as well as researchers with expertise in developing measures of structural oppression, such as structural racism. </sec> <sec> <title>RESULTS</title> This project was funded in August of 2024. As of October 2025, our team has read more than 50 texts as part of our historical and policy analysis of the factors that characterize structural ableism. We plan to complete our characterization of structural ableism in the spring of 2026, with individual-level measures of structural ableism being developed by the Winter of 2028 and community-level measures created by the Winter of 2029. </sec> <sec> <title>CONCLUSIONS</title> The measures developed by this work will lay the foundation for identifying and evaluating novel interventions aimed at dismantling structural ableism, which should be cocreated with the disability community. </sec> <sec> <title>INTERNATIONAL REGISTERED REPORT</title> DERR1-10.2196/86976 </sec>

  PublisherDOI

• Peer support groups as a participatory development principle

  Development in Practice · 2025-04-24

  articleSenior authorCorresponding

  This paper reimagines peer support groups by centring a community’s worldviews. We engage with Iliso Lamakhosikazi, a women’s peer support group in South Africa, through an eight-week qualitative study embedded within nearly a decade of collaborative research. This study, using participatory observations, interviews, and focus groups, reveals how Iliso Lamakhosikazi reimagines peer support groups in terms of sociality, focus, and operational structure. The findings show that embedding development efforts within community worldviews can emphasise collective well-being, enhance relationality, and support broader health and wellness goals. Future efforts should apply empowered participation to reimagine other participatory development principles, such as community gardens and mutual aid groups, grounded in a community’s ways of knowing.

  PublisherDOI

Recent grants

• Self-Management Characterization for Children with Medical Complexity and their Social Networks

  NIH · $444k · 2018–2021

• CloudConnect: Consumer Health IT for Enhanced Treatment of Chronic Illness

  NIH · $1.4M · 2016–2021

• Informing Consumer Health IT Design: How Patients Use Social Networking Sites

  NIH · $100k · 2014–2015

• NIH Grant R36HS018809

  NIH · $34k · 2012

Frequent coauthors

• Richard J. Holden

  Indiana University School of Medicine

  61 shared

• Courtney C. Rogers

  University of Virginia

  38 shared

• Patrícia Flatley Brennan

  United States National Library of Medicine

  16 shared

• Mustafa Ozkaynak

  15 shared

• Claire Wellbeloved-Stone

  14 shared

• Richard J. Holden

  Indiana University Bloomington

  12 shared

• Nicole E. Werner

  Indiana University Bloomington

  11 shared

• Enid Montague

  11 shared

Awards & honors

• 2025 Human Factors and Ergonomics Society Fellow