The disability community has been using the term “Nothing About Us Without Us” since the 1990s. It is a political slogan with a simple message: no decisions should be made regarding people with disabilities without their input.
Yet, when it comes to clinical research, people with disabilities have too often been excluded and ignored from studies. Whether because researchers did not actively recruit them or the research was not made accessible to them, people with disabilities have historically been left out of clinical trials. To make sure people with disabilities are able to benefit from the next generation of medical advances, we must ensure they are represented in the research that creates them.
That’s why the American Association on Health and Disability (AAHD) has teamed up with the National Association of County and City Health Officials (NACCHO), which serves close to 3,000 local health departments, in supporting the All of Us Research Program. This ambitious nationwide program is funded by the National Institutes of Health (NIH) and aims to increase the participation of historically underrepresented communities in medical research.
AAHD has supported the All of Us Research Program with outreach to the disability community since the program launched in May 2018, and has helped the program reach its current milestone of over 365,000 participants.
The All of Us Research Program is your chance to get involved in direct, leading-edge research to find solutions that could help people with disabilities. For the first time, people with disabilities are being encouraged to participate and are being asked to enroll in a research study that can have a direct impact on how health care is delivered in the future. If we truly believe in the concept of “nothing about us without us,” then we must answer the call when asked to participate.
The All of Us Research Program plans to recruit at least one million people to share their health and lifestyle data. The program recognizes the importance of recruiting traditionally underrepresented and underserved populations living in the United States, providing the disability community a unique opportunity. The research program also understands the importance of collecting data responsibly; data shared is voluntary and individuals can opt out at any time.
People with disabilities know all too well that health status is not just dependent on a medical diagnosis. The “one-size-fits-all” philosophy is not effective, as each person is unique and requires individualized care and treatment. There are many physical, cultural, and environmental barriers unique to the disability community, and the presence of secondary conditions and health disparities is often overlooked by health care providers. By joining the All of Us Research Program, you can help shed light on the unique factors that shape our health and help drive the future of personalized medicine that better understands our needs.
If you are interested in the opportunity to change how medicine operates for the better, and if you believe in “Nothing About Us Without Us,” then consider participating in the All of Us Research Program.
For more information about how you can get involved in the All of Us Research Program, please visit the American Association on Health and Disability website https://www.aahd.us/initiatives/all-of-us-research-program/ or visit the program’s website https://www.JoinAllofUs.org/together.