The Disability Data Equity Research Working Group is a working group of the DHERN that engages in cooperative research on disability data equity, and promotes the participation and leadership of disabled researchers in these endeavors.
High-quality data is essential for identifying, understanding, and addressing the disparities experienced by disabled people. Yet, national vital statistics, surveys, and many other data collection mechanisms do not consistently include disability data or, when doing so, use measurements that are not inclusive of all disabled people. The Disability Data Equity Research Working Group, individually and collectively, engages in conceptual and empirical research focused on making disability measurement more inclusive and equitable.
Below are links to suggested readings on disability measurement equity.
Boggs D, Kuper H, Mactaggart I, Bright T, Murthy G, Hydara A, McCormick I, Tamblay N, Alvarez ML, Atijosan-Ayodele O, Yonso H, Foster A, Polack S. Exploring the Use of Washington Group Questions to Identify People with Clinical Impairments Who Need Services including Assistive Products: Results from Five Population-Based Surveys. Int J Environ Res Public Health. 2022 Apr 3;19(7):4304. https://doi.org/10.3390/ijerph19074304
Cerilli, C., Varadaraj, V., Choi, J., Sweeney, F., Castro, F., Landes, S. D., & Swenor, B. K. (2024). Disability inclusion in national surveys. Health Affairs Scholar, 2(9). https://doi.org/10.1093/haschl/qxae117
Hall, J. P., Goddard, K. S., Ipsen, C., Myers, A., & Kurth, N. K. (2024). Counting Everyone: Evidence for Inclusive Measures of Disability in Federal Surveys. Health Affairs Scholar.
https://doi.org/10.1093/haschl/qxae106
Hall, J. P., Kurth, N. K., Ipsen, C., Myers, A., & Goddard, K. (2022). Comparing Measures Of Functional Difficulty With Self-Identified Disability: Implications For Health Policy: Study compares measures of functional difficulty with self-identified disability. Health Affairs, 41(10), 1433-1441. https://doi.org/10.1377/hlthaff.2022.00395
Hermans, A., Morriss, S., & Popkin, S. J. (2024). An Opportunity for the Census Bureau to More Accurately Estimate the Disabled Population in the US. Urban Institute.
https://www.urban.org/research/publication/opportunity-census-bureau-more-accurately-estimate-disabled-population-us
Ipsen, C., Chambless, C., Kurth, N., McCormick, S., Goe, R., & Hall, J. (2018). Underrepresentation of adolescents with respiratory, mental health, and developmental disabilities using American Community Survey (ACS) questions. Disability and Health Journal, 11(3), 447-450. https://doi.org/10.1016/j.dhjo.2017.11.005
Karpman, M., & Morriss, S. (2024). Current Approaches to Measuring Disability Status in Federal Surveys May Limit Understanding of Economic and Health Disparities. Urban Institute. https://www.urban.org/research/publication/current-approaches-measuring-disability-status-federal-surveys-may-limit
Landes, S. D., Swenor, B. K., & Hall, J. P. (2024). Performance of the Washington Group questions in measuring blindness and deafness. Health Affairs Scholar, 2(11). https://doi.org/10.1093/haschl/qxae131
Landes, S. D., Swenor, B. K., Clark, M. A., Goddard, K., S., Hall, J. P., Hermans, A., Ipsen, C., Karpman, M. Kurth, N. K., Myers, A., Popkin, S.J., Salinger, M.R., & Vaitsiakhovich, N. (2024). A Research Roadmap Toward Improved Measures Of Disability. Health Affairs Forefront. https://doi.org/10.1377/forefront.20240708.306851
Landes, S. D., Swenor, B. K., & Vaitsiakhovich, N. (2023). Counting disability in the National Health Interview Survey and its consequence: Comparing the American Community Survey to the Washington Group disability measures. Disability and Health Journal, 17, 1-9. https://doi.org/10.1016/j.dhjo.2023.101553
Sabariego, C., Lee, L., Bickenbach, J., & Chatterji, S. (2024). Estimating disability prevalence in population surveys: an exploratory study using national surveys carried out in Ethiopia, Uganda, Tanzania and USA. Disability and Rehabilitation, 1–8. https://doi.org/10.1080/09638288.2024.2441424
Sabariego C, Oberhauser C, Posarac A, Bickenbach J, Kostanjsek N, Chatterji S, Officer A, Coenen M, Chhan L, Cieza A. Measuring Disability: Comparing the Impact of Two Data Collection Approaches on Disability Rates. Int J Environ Res Public Health. 2015 Aug 25;12(9):10329-51. https://doi.org/10.3390/ijerph120910329
Salinger, M. R., Feltz, B., Chan, S. H., Gosline, A., Davila, C., Mitchell, S., & Iezzoni, L. I. (2023). Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness. JAMA Health Forum, 4(9), e233180-e233180. https://doi.org/10.1001/jamahealthforum.2023.3180
Schulz, J. A., Hall, J. P., West, J. C., Glasser, A. M., Bourne, D. E., Delnevo, C. D., & Villanti, A. C. (2024). Measuring disability among U.S. adolescents and young adults: A survey measurement experiment. Preventive Medicine Reports, 43, 102770.
https://doi.org/10.1016/j.pmedr.2024.102770
Swenor, B. K. (2022). A Need For Disability Data Justice. Health Affairs Forefront.
https://doi.org/10.1377/forefront.20220818.426231
Ward, B., Myers, A., Wong, J., & Ravesloot, C. (2017). Disability Items From the Current Population Survey (2008–2015) and Permanent Versus Temporary Disability Status. American Journal of Public Health, 107(5), 706-708. https://doi.org/10.2105/ajph.2017.303666
The working group meets monthly. Contact sdlandes@syr.edu