Subscribe
By Dielle Lundberg in Volume 1 —

Addressing Ableism in the Disability-Adjusted Life Year (DALY): Recommendations for Reform and Future Research

This commentary builds on a recently published methodological critique about ableism in the disability-adjusted life year (DALY) by outlining recommendations for addressing ableism in the DALY and proposing directions for future research.

Table of Contents: Introduction | Recommendations for Reform | Directions for Future Research | Concluding Remarks | Publication Information | References

Introduction

A recently published research brief [1] in Ableism & Healthcare Now presents a methodological critique of the disability-adjusted life year (DALY), a widely used global health and health economics metric, from the perspective of ableism. The critique raises two overarching questions about the measurement of disability weights that are used to estimate the DALY. First, it asks: is asking the general population to imagine and rate the health of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people a reliable or valid way to assess the lived experiences of those populations? Second, it asks: if disability weights are intended solely to represent societal preferences for health states, what actions have been taken to ensure the preferences elicited are fair to disabled people?

This critique joins a growing number of voices, especially disabled researchers and community members, who have expressed concerns about the DALY and a related health metric, the quality-adjusted life year (QALY) [2-5]. This current commentary builds on that research brief by outlining recommendations for addressing ableism in the DALY and by proposing directions for future research to understand how ableism-related bias may shape research that relies on the DALY.

Recommendations for Reform

Addressing ableism in the DALY will require a multi-level approach, with five initial recommendations summarized here.

1. Centering Lived Experience in Research

One common way ableism becomes embedded in health research that involves the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people is when people who share these lived experiences are not included in the research process and leadership [6]. Addressing ableism-related bias within the methodologies underlying the DALY will require input and leadership from disabled researchers and community members.

2. Involving Disability Studies Scholars

While the term “disability” in DALY may be a misnomer [3], the expertise of disability studies scholars and other researchers who study ableism will be critical to address ableism in the DALY. The DALY describes the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people, and thus, concepts from disability studies are highly relevant. For example, crip time is a concept explored in disability studies that refers to how disabled people experience time in variable, non-normative ways [7]. As a result, a disabled person may value one year of life differently than a nondisabled person, which is a tension that the DALY has not addressed. Disability studies scholars and other scholars focused on ableism could help clarify what the DALY is actually measuring. They could also ensure the measure is constructed in ways that reflect how diverse communities of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people today commonly understand their experiences.

Research to gain an understanding of ableism-related bias within the DALY should, at a minimum, consider the three levels of bias identified in the research brief [1]. First, do self-reported disability weights from disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people differ from those of the general population, and for which health conditions? Second, are there ableist assumptions embedded in the language and fielding of the disability weight assessments? And third, are there ableist assumptions in the approaches used to map these valuations back onto health conditions and disabilities?

4. Transitioning Away From General Population Generated Disability Weights

More broadly, stakeholders invested in the DALY should gather together with disabled researchers and community members to discuss the trade-offs between disability weights reported by the general population versus patients living with a health condition. While there are issues of accuracy and reliability [8], there is also an ethical question: is it acceptable to sideline disabled people who are fully capable of reporting on their own health for the sake of sampling convenience?

5. Renaming the DALY

No matter how deeper issues of ableism within the DALY are addressed, the fact remains that this metric is called the “disability-adjusted life year” and it involves values on a scale of 0 to 1 that characterize the lived experiences of disabled, d/Deaf, chronically ill, neurodivergent, mad, and/or mentally ill people. The implication that perfect health, a value of 0, is nondisabled is ableist. As long as the DALY continues to measure health in this way, it should not include “disability” in its name, as an issue of respect. Changing the name would support more positive engagement with disabled researchers and community members.

Directions for Future Research

Regardless of whether reforms to the DALY are adopted in the short or long-term, research is needed to examine how estimates from past and present studies using the DALY may have been influenced by ableism-related bias. Four priority areas for future research on ableism-related bias and the DALY are proposed here.

1. Tracing the History of Disabled Stakeholder Engagement in the Development of the DALY

While multiple commentaries and reviews trace the evolution of the DALY [9], it remains unclear to what extent researchers behind the DALY have engaged with (1) disabled community members and researchers and (2) disability studies scholars and others studying ableism, since introducing the DALY in 1993. A qualitative study should be undertaken to understand this history, leveraging key informant interview and an analysis of all published DALY literature. Identifying where consultation did and did not occur can help reveal areas within the DALY methodology that may be especially susceptible to ableism-related bias.

2. Analyzing the Instruments and Algorithms Used in Disability Weight Assessment

The methodological critique presented in the recently published research brief [1] offers guiding questions for considering ableism within the DALY, but it does not examine the instruments, technical documents, and algorithms underlying disability weight assessments to identify specific points where ableism is present. A methodological article applying theory from disability studies to offer a detailed analysis of ableism in these instruments, technical documents, and algorithms should be written. Such an analysis would identify specific methodological issues for disability weight measurement and the DALY and provide actionable recommendations for consideration by the researchers behind the DALY.

3. Comparing Disability Weights Generated for Priority Health Conditions and Disabilities

While a limited amount of prior research has compared patient-reported and general population generated disability weights [8], more work is needed to understand how disability weights vary especially for priority health conditions and disabilities that are likely to be impacted by ableism. A systematic review should be conducted for a selected group of health conditions and disabilities to understand (1) the amount of variation between patient-reported and general population reported disability weights and (2) the direction of these effects.

4. Quantifying the Effects of Uncertainty in Disability Weights on DALY Estimates

A final direction for future research is to quantify the potential impact of ableism-related bias in disability weight measurements on specific DALY estimates. A study should be designed to produce quantitative models showing how Global Burden of Disease Study estimates [10] change after incorporating the variation in disability weight estimates identified in the systematic review proposed above.

Concluding Remarks

Addressing ableism-related bias in the DALY is imperative for improving the reliability and accuracy of disability weights and DALYs. Inaccuracy in these metrics is an important health equity issue because health measures that fail to reflect the lived experiences of disabled people represent one pathway through which structural ableism affects health outcomes in disabled communities [11]. Given that the original purpose of the DALY was to allocate more resources to the health of people living with disabling conditions [12], the researchers behind the DALY should be highly motivated to engage in this work.

Publication Information

Author

Dielle J. Lundberg is an independent researcher and the founder of Ableism & Healthcare Now. She is a white, transfeminine person who is disabled, mad, and neurodivergent.

Funding Statement

The author received no external funding for this work.

Declaration of Interests

The author has no conflicts of interest to disclose.

Disclaimer

The content is solely the responsibility of the author and does not necessarily represent the views of any other institutions, funding agencies, community organizations, or other projects the author is affiliated with or connected to presently, in the past, or in the future.

Preprint and Access Information

This commentary is Publication 2, Volume 1 of Ableism & Healthcare Now, an independent research and analysis project about structural ableism in public health and healthcare. This publication has not been peer-reviewed. It is published open-access here on the project website.

Suggested Citation

Lundberg DJ. Addressing Ableism in the Disability-Adjusted Life Year (DALY): Recommendations for Reform and Future Research. Ableism & Health Care Now. Published online September 30, 2025. https://www.ableismnow.org/volume-1-pub-2/

References

  1. Lundberg DJ. Revisiting the Disability-Adjusted Life Year (DALY) as a Health Metric: Rigorous Science or Ableist Guesswork? Ableism & Healthcare Now. Preprint. SocArXiv. Published online July 31, 2025. doi:10.31235/osf.io/nzk62_v1
  2. National Council on Disability. Quality-adjusted life years and the devaluation of life with disability. 2019. https://www.ncd.gov/report/quality-adjusted-life-years-and-the-devaluation-of-life-with-a-disability/
  3. Grosse SD, Lollar DJ, Campbell VA, Chamie M. Disability and disability-adjusted life years: not the same. Public Health Rep. 2009;124(2):197-202. doi:10.1177/003335490912400206
  4. Schneider P. The QALY is ableist: on the unethical implications of health states worse than dead. Qual Life Res. 2022;31(5):1545-1552. doi:10.1007/s11136-021-03052-4
  5. Lundberg DJ. Disability and Health State Utility Values: A Framework for Assessing Ableism and Equity. Value & Outcomes Spotlight. July/August 2023;9(4):32-35. https://www.ispor.org/publications/journals/value-outcomes-spotlight/vos-archives/issue/view/global-threats-from-climate-change/disability-and-health-state-utility-values-a-framework-for-assessing-ableism-and-equity
  6. Rotenberg S. Integral to inclusion: amplifying public health leaders with disabilities. Lancet Public Health. 2021;6(8):e543. doi:10.1016/S2468-2667(21)00141-9
  7. Ljuslinder K, Ellis K, Vikström L. Cripping time – understanding the life course through the lens of ableism. Scand J Disabil Res. 2020;22(1):35-38. doi:10.16993/sjdr.710
  8. Ludwig K, Ramos-Goñi JM, Oppe M, Kreimeier S, Greiner W. To What Extent Do Patient Preferences Differ From General Population Preferences? Value Health. 2021;24(9):1343-1349. doi:10.1016/j.jval.2021.02.012
  9. Chen A, Jacobsen KH, Deshmukh AA, Cantor SB. The evolution of the disability-adjusted life year (DALY). Socioecon Plann Sci. 2015;49:10-15. doi:10.1016/j.seps.2014.12.002
  10. GBD 2021 Diseases and Injuries Collaborators. Global incidence, prevalence, years lived with disability (YLDs), disability-adjusted life-years (DALYs), and healthy life expectancy (HALE) for 371 diseases and injuries in 204 countries and territories and 811 subnational locations, 1990-2021: a systematic analysis for the Global Burden of Disease Study 2021. Lancet. 2024;403(10440):2133-2161. doi:10.1016/S0140-6736(24)00757-8
  11. Lundberg DJ, Chen JA. Structural ableism in public health and healthcare: a definition and conceptual framework. The Lancet Regional Health - Americas. 2024;30:100650. doi:10.1016/j.lana.2023.100650
  12. Murray CJ, Acharya AK. Understanding DALYs (disability-adjusted life years). J Health Econ. 1997;16(6):703-730. doi:10.1016/s0167-6296(97)00004-0