Through the National Institutes of Health’s (NIH) All of Us Research Program, scientists can put data into the hands of community members who are not just healthcare professionals, said Karriem Watson, DHSc, MS, MPH, the All’s chief engagement officer of Us Research Program at NIH, during a presentation at the 15th American Association for Cancer Research Conference on the Science of Cancer Health Disparities in Racial/ethnic Minorities and the Medically Underserved. Instead, the All of Us Research Program encourages public access and knowledge of the public’s own data to better understand its impact on the public’s own communities.
Watson explained that in Chicago, health inequalities and differences in life expectancy have been broad topics of discussion between health professionals and community members for many years. However, many elected officials in the city who made decisions that could affect these health issues were unaware of the disparities in cancer incidence and outcomes, and how it affects their communities. Additionally, these officers were the ones who made decisions about the allocation of government assistance and support for health care needs.
To better educate these elected officials about the incidence of cancer and its impact on the city, Watson and his colleagues worked to bring this data to the attention of elected officials. In addition, the researchers helped explain and analyze the data and its impact on their communities in layman’s terms.
“When you take that data and you give it to communities and not only encourage them to use it, but also make your faculty and staff accessible to those communities to help them navigate and understand that data — that’s real what we like to think of as the liberation of data science,” said Watson.
As the All of Us Research Program continues to work to provide a broader public access dataset, Watson stated that his goal is to register 1 million or more individuals in the United States over the next 10 years.
“We’re right with about 523,000 people registered today, and of those about 372,000 participants have donated data, which allows us to really dig deep,” said Watson. “Then 80% of the 372,000 are in underrepresented groups in biomedical research, and 45% of those are self-identified racial and ethnic minorities.”
To access this data, Watson explained that 3 levels are available. The first tier is the public tier, available to anyone with digital access, which Watson recognizes as a potential limitation on universality.
“So we use that term for everyone, but that’s contextualized,” Watson said. “It is available to anyone with internet access. And it’s available to those who are able to view and understand the electronic health record (EHR) and see aggregated data about what medical conditions we have.”
Watson also noted that people can view the research project directory at the public level. He explained that this is especially important for those in the community who donate their data, as they can then see how that information is being used for research purposes. In addition, the public can see specifically what types of questions researchers are asking regarding the use of their data.
“We’re really excited about that,” said Watson.
Additional layers available to access the All of Us research program data set include the register layer data and the control layer data, which can provide information specific to the needs of each layer.
“For example, in the register level data, we have information from our surveys. We recently launched a survey on social health conditions and a survey on COVID-19, in which we asked questions about discrimination, questions about food insecurity and questions about social isolation as a result of the pandemic – and imagine that data with EHR data of over 270,000 are coupled to participants and physical measures and even data like wearables,” said Watson.
Due to the restricted access of wearables as a measurement method, Watson explained that the All of Us Research Program donated wearables to populations not normally participating in studies of this type to augment the medical data collected.
At the next level of access, at the control level, Watson found that the program not only captured what was available at the registry level, but further expanded it to include spend demographics, unsent event data, and genomic data from whole genome sequencing. In addition, Watson explained that the program will soon be able to provide three-digit zip code data, as well as at the control level access level, with more than 24,300 health conditions and over 15,300 unique laboratory values.
“Today we have approximately 42,000 of our participants who have indicated in their electronic medical record that they have been diagnosed with cancer. That’s 18% of our participants living with or diagnosed with cancer,” said Watson. “Think of some of the major types of cancer such as skin cancer, breast cancer, prostate cancer, colon cancer and lung cancer – from these projects we have over 2000 projects in our research register. This is just a snapshot of 162 exploring the intersectionality of cancer, asking questions such as the impact of diet and physical fitness on prostate cancer, social determinants of colorectal cancer, genomic variants of breast cancer, and then personal cancer histories in the family.”
Watson KS. The All of Us Research Hub: A dataset for all of us. Philadelphia, PA: 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minority and Medically Underserved; 09/17/2022.