The Independent Living Research Utilization (ILRU) is a nationally recognized program of TIRR Memorial Hermann, a medical rehabilitation facility for people with disabilities in Houston, Texas. ILRU has been supporting AAHD’s national outreach to the disability community on the All of Us Research Program since 2018.
Research by Us, For Us
Every summer, ILRU hosts their annual internship program that aims to train students and young people with disabilities in research and community outreach, while educating them on disability policy and history. As part of this program, interns completed a project using health data from the National Institutes of Health’s All of Us Research Program as a way to learn about precision medicine while developing their research and presentation skills.
Over the course of ten weeks, these interns met weekly for lectures, guest speakers, group discussions, and 1-on-1 check-ins. As part of their experience, interns were tasked with creating and conducting their own research study. They also examined the histories of the Americans with Disabilities Act (ADA) and the independent living movement, while regularly connecting with the broader disability community through conferences and events. In September, the ILRU internship cohort presented their final research papers.
AAHD’s Senior Research Associate, Jacob Ditsch, met with the cohort in July to introduce the All of Us Data Browser, which provides a summary of the health data available in the Researcher Workbench. The interns were given an overview of the data types included and began to create their research questions from there.
When first designing their research, the interns were given a few sample research questions to guide their inquiry:
- ‘Do certain genders tend to have certain diseases?’
- ‘What demographics are subject to certain healthcare behaviors?’
- ‘Which ethnic groups engage in the most healthcare utilization?’
The interns constructed their research questions informed by their own interests and health experiences. Many shaped their questions to explore the influences of ethnicity and family history on health. After deciding on a research question, each of the interns refined their hypothesis, identified their source data from the Data Browser, and proceeded to analyze the available data. They each gave a full poster presentation of their findings.
Some of the interns were surprised by their own findings. One study found that gender and age had no effect on the percentage of patients with cancer-related fatigue. Another team sought to research opioid usage but was disappointed to see very little information on drug behaviors. The interns noted the breadth of information available but wished to design their studies with more specificity around disability and ethnic groups. As many of these interns are looking toward future careers in medicine, they appreciated the opportunity to learn more about health disparities and the promise of precision medicine.