All of Us logo blue block

Nothing About Us Without Us: AAHD’s Call to Action

Feb 03, 2021 | Andrea Grenadier

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.


About Andrea Grenadier

More posts by Andrea Grenadier

Related Posts

Drugs
  • Press Release

After 50 Years, NACCHO Calls for an End to the War on...

The War on Drugs was declared on June 17, 1971, expanding the federal...

Jun 17, 2021 | Theresa Spinner

After 50 Years, NACCHO Calls for an End to the War on...

Logo AHEAD
  • HIV, STI, & Viral Hepatitis

HHS Updated America’s HIV Epidemic Analysis Dashboard...

HHS updated AHEAD with new data for all 6 EHE indicators at the national,...

Jun 11, 2021 | Shalesha Majors

HHS Updated America’s HIV Epidemic Analysis Dashboard...

  • COVID-19
  • HIV, STI, & Viral Hepatitis

How COVID-19 Altered HIV Care, PrEP Use, and Sexual...

This study adds to a research trend showing COVID-19’s significant impact on...

Jun 11, 2021 | Shalesha Majors

How COVID-19 Altered HIV Care, PrEP Use, and Sexual...

  • HIV, STI, & Viral Hepatitis

STI Express Services: Increasing Access and Testing...

This brief summarizes the results of the STI Express Initiative and highlights...

Jun 11, 2021 | Shalesha Majors

STI Express Services: Increasing Access and Testing...

Cdc badge small
  • HIV, STI, & Viral Hepatitis

CDC DIS Workforce Development Funding

The CDC Division of STD Prevention just launched a website dedicated to the...

Jun 11, 2021 | Shalesha Majors

CDC DIS Workforce Development Funding

  • HIV, STI, & Viral Hepatitis

CDC/NCSD Quarterly National Internet Partner Services...

Disease Intervention Specialists (DIS) serve as a cornerstone of the STD field...

Jun 11, 2021 | Shalesha Majors

CDC/NCSD Quarterly National Internet Partner Services...

  • HIV, STI, & Viral Hepatitis

Expanding the Role of Retail Health Clinics in...

The National Coalition for Sexual Health, in partnership with the Convenient...

Jun 11, 2021 | Shalesha Majors

Expanding the Role of Retail Health Clinics in...

Cdc hiv nhtd 2021 promo instagram
  • HIV, STI, & Viral Hepatitis

National HIV Testing Day

CDC has a new digital toolkit in recognition of National HIV Testing Day, June...

Jun 11, 2021 | Shalesha Majors

National HIV Testing Day

California PTC Logo900px
  • HIV, STI, & Viral Hepatitis

Speaking Frankly Podcast

The UC San Francisco California Prevention Training Center recently launched...

Jun 11, 2021 | Shalesha Majors

Speaking Frankly Podcast

Back to Top