Abstract
Medical care disparities for people with Down Syndrome may be exacerbated by the inaccessibility of health systems and personal health data trackers, which can limit their ability to manage their own health. Unfortunately, many of these technologies are created without people with Down Syndrome being factored in as eventual end-users. The few health systems and personal health data devices designed with people with Down Syndrome in mind are more commonly developed on behalf of people with Down Syndrome rather than directly involving them in research, design, and development. One reason for less frequent involvement may be a lack of methodological guidance in the literature on how to make participant-facing materials more accessible and research protocols more inclusive to them by playing to their strengths. This paper describes some of the initial efforts of the Health Data Storytelling project. We describe our efforts to make accessible research materials and develop inclusive study procedures to better facilitate the participation of people with Down Syndrome in the design and development of future personal health data and information systems.
A. Forsythe-Korzeniewicz---No University Affiliation (Self-Advocate)
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Acknowledgements
A special thanks to our subject matter experts: Dr. Brian Skotko M.D., Dr. Rhonda Faragher Ph.D., and Dr. Katie Frank Ph.D., OTR/L. The work reported in this publication was supported, in part, by grant number 90RE5027 (Universal Interface and Information Technology Access RERC) and 90REGE0008 (Inclusive ICT Rehabilitation Engineering Research Center), from the National Institute on Disability, Independent Living, and Rehabilitation Research, U.S. Administration for Community Living, Department of Health and Human Services. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official policy of the Federal government.
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Wood, R.E., Lazar, J., Feng, J.H., Forsythe-Korzeniewicz, A. (2023). Creating Inclusive Materials and Methods for Co-designing Health Information Technologies with People Who Have Down Syndrome. In: Goodman-Deane, J., Dong, H., Heylighen, A., Lazar, J., Clarkson, J. (eds) Design for Sustainable Inclusion. CWUAAT 2023. Springer, Cham. https://doi.org/10.1007/978-3-031-28528-8_19
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