Count Us In: Why All of Us Makes Sense for Montanans with Disabilities
There are many things we treasure about living in the Last Best Place. Wide open spaces, pristine wilderness, a slower pace of life, and knowing our neighbors. These are benefits we enjoy here, all of which contribute to our quality of life. But there are downsides to living off the beaten path. People in rural states are often overlooked by experts when major health and wellness studies take place. And when data about us is missing, it can't drive the policies and protocols that affect our lives.
Montanans with disabilities can be doubly overlooked. Medical research has traditionally excluded people with disabilities because they are considered to fall outside the "healthy" baseline profile many researchers seek. Now, the National Institutes of Health (NIH) is working to correct this data imbalance. Having a disability is not a scientifically valid reason to exclude someone from critical research. The best health treatment protocols for diverse populations, like those with disabilities, can't be found if researchers don't have access to their data.
In an attempt to address this problem of exclusion, the NIH has mounted an ambitious new health study called the All of Us Research Program which aims to count people with disabilities in. The NIH and a body of nationwide partners are seeking to enroll one million or more people living in the U.S. from overlooked populations in a historic, long-term health study that truly reflects the diversity of our country. The resulting data will enable a far better understanding of what keeps us healthy and what makes us sick. This inclusive approach represents a dramatic break from a historic trend of narrow research, generating data pools based largely on white populations who do not fall outside a certain age range, geographic area, or health profile. All of Us recognizes the power of precision medicine – medical treatment tailored to your lifestyle, environment, and genetic profile. The greater the variety of data available to researchers, the better precision medicine can work.
Bob Liston, a Missoulian who has used a wheelchair since his spinal cord injury as a teen, discovered the consequences of one-size-fits-all medicine this year while undergoing treatment for bladder cancer. Doctors were surprised by his reaction to chemotherapy, which caused repeated UTIs and multiple hospitalizations. After switching to immunotherapy, he developed hemolytic anemia. How many other spinal cord injury patients have had similar reactions? Without a comprehensive data pool, doctors can't conduct the research to find out.
"It would have been great, going into my cancer treatment, to know that my treatment protocol had been successful with others who have spinal cord injuries," said Liston. "And if it had posed a particular kind of risk for people with SCI, it would have been great to know that in advance."
Liston continues, "Without good data, it makes it too easy for doctors to assume that a treatment will or won't work for someone with a disability." Although he was interested in a surgical option for his cancer, an out-of-town hospital ultimately rejected him as a potential patient, saying there were "too many moving parts." Liston reflects, "That may have been a good decision on their part or it may not have been. But it wasn't necessarily based on data and it wasn't a discussion."
Liston plans to participate in the historic All of Us study, where anonymized information about his background, genetics, lifestyle, and health history will be added to a research database. "I want others to learn from what I've been through," he said. Liston will fill out health surveys, agree to share his electronic health records (EHR), and may be invited to visit a partner center to have his physical measurements taken and provide biosamples (such as blood and urine specimens and a swab of DNA). Then his data will be anonymized, which means his identifying information will be separated from his health information in a secure, encrypted database. The risks are minimal and the potential to do good is great.
Researchers around the country will use All of Us data to understand exactly how our risk factors and health outcomes correlate to our environment, genes, and way of living. They hope to discover new genetic markers for common and rare diseases, identify individual differences in how we respond to drugs, and develop entirely new disease classifications. If health issues are cropping up repeatedly in certain geographical areas, those patterns can be discovered and studied. Over the long term, researchers will be able to use their discoveries to empower those who take part in All of Us to improve their own health. For example, clinical trials of new therapies might be offered to those who could benefit from them.
Will you be one of the one million All of Us participants to make medical history? Count yourself in! Your participation will help put Montanans with disabilities on the map of medical research and discovery for years to come. To learn more or sign up to participate, visit JoinAllofUs.org.