Camille White, MD shares her experience as part of the National Institutes of Health’s All of Us Research Program, which aims to study the health of 1 million people over a 10-year period.
Using Community Outreach, Precision Medicine and EHRs to Impact Healthcare
The National Institutes of Health All of Us Research Program is an innovative approach to precision medicine. The goal is to recruit 1 million people from diverse backgrounds and aspects of life to participate. Anyone over the age of 18 is eligible to participate. The program is slated to last for 10 years, but participants can remain involved for a shorter duration if they choose. Their contribution will provide data for the larger pool of medical research, and precision medicine efforts that can support an individual’s health.
Much like going to the ophthalmologist to get a pair of glasses specific to your vision needs or receiving a blood transfusion based on your blood type, precision medicine is an opportunity to fine tune medical treatments that are best suited for the individual. It may also provide insight into the healthcare measures that may potentially impact your health or that of your family.
In college, I joined the Sigma Gamma Rho Sorority, a black Greek letter sorority committed to serving the community. For the All of Us Program, I am participating as part of the Black Greek Letter Consortium. My organization, along with four others, has been using social media and attending events across the country to introduce people to precision medicine through this initiative. You may see our group with the All of Us tent set up passing out literature and speaking to people on college campuses and at homecomings, churches, sporting events, libraries or other venues. Our goal is to provide outreach and education in person or through the hashtags #JoinAllofUs, #AllofUs, #SGRhoAllofUs, and #SigmaGammaRho.
Through this outreach, I have been able to speak with people on a very personal level. They are concerned that generations of family members have been diagnosed with breast cancer, diabetes, fibromyalgia, ulcerative colitis and other diseases. They want to know how the program can bring them closer to finding more effective treatments and preventative measures to manage their health and that of their family. Their reactions let me know people are interested, which energizes me to keep spreading the word!
In the past, much of our healthcare treatment has been developed based on research provided by the majority race and gender of the United States population. These treatments were then used for people of other races and genders. Many people got better using these treatments, but many people did not. In fact, many suffered life-threatening adverse reactions that were previously unidentified.
All of Us is collecting information to create a robust data set that will provide insights as to how individuals can achieve better health based on their personal health history, including illnesses, medications, mental health, exercise habits, eating habits, environmental factors and even genomic make up.
It is known that some diseases affect certain groups of people more than others. Given historic advances in medicine and information technology, the time is now to take a closer look into specific factors that can help improve individual health outcomes and quality of life.
To become involved, sign up through the All of Us app, which is available on Google Play store or the website. Create an account and fill out an enrollment and informed consent form. The app has a short video that explains the informed consent process, which I found to be helpful.
Once you sign up, you will be sent surveys to complete, and you might be asked to go to a partner center to give blood or urine samples and other body measurements. This is done free of charge, with no cost to you or your insurance. These partner centers are conveniently located in places like Walmart or Walgreens. Personal identifying information is removed from all samples. The program is extremely committed to protecting participants’ privacy!
As you become more involved in the program, you may be asked to share your electronic health records. This is important for researchers to have a longitudinal view of your health history. If you are not comfortable sharing this information, you may opt out. Keep in mind, this limits the insight researchers will have into your healthcare.
As a participant, you can access your records at any time. You will have visibility to see what is being done with your information and the outcomes of the analysis of the information. You can also decide to move forward or disconnect from the program.
By Camille White, MD, MHA (@drcamillewhite) senior population healthcare executive at Cerner, and assistant to the national programs chair of Sigma Gamma Rho Sorority.