Last year, School of Public Health faculty and students teamed with a group of athletes at Special Olympics Massachusetts (SOMA) to explore a fresh approach to disability health research—one that prioritizes the perspectives and experiences of people living with intellectual and developmental disabilities (IDD), and builds the direct involvement of the IDD community into the work.

This type of research is called “co-research” because it incorporates members of the community into the research team, as opposed to community members acting only as study subjects. This approach gives people with IDD the educational tools to study the health issues they experience first-hand. In March 2021, the SPH team designed and launched a year-long co-research public health training program with the SOMA athletes, and on Tuesday, November 8, the students and athletes will present the benefits of this training during the American Public Health Association Annual Meeting & Expo, held this year at the Boston Convention & Exposition Center.

Co-research on disability health is an empowering opportunity for people with IDD to drive and inform the studies on the health issues that matter most to them, says Eric Rubenstein, assistant professor of epidemiology, adding that co-research can also benefit other communities. Rubenstein initiated the collaboration with funding from a Practice Innovation Award that he received from SPH’s idea hub, but he credits the success of the training program to the students who designed and implemented it, and to the SOMA athletes who informed the direction of the project, conducting a sample research study throughout the six-session program.

“Our goal with this project was to create a sustainable program that can empower individuals with intellectual and developmental disabilities to co-lead research projects driven by the needs they see in their community,” says Rubenstein, who has worked closely with people with IDD since elementary school and has served as a SOMA coach for 22 years. The statewide nonprofit organization provides sports training and competition for both children and adults with IDD, as well as extensive healthcare programming, advocacy, and leadership to the IDD community. The co-research course presented additional educational training to SOMA athletes to enable them to lead or become more actively involved in disability health studies, Rubenstein says. “This is a huge opportunity for the athletes themselves to participate and have a say in the research. They are the real experts on intellectual disability—it is their lived experience, and that is really valuable for a research team.”

The group members presenting at APHA include Anna-Mariya Kirova (SSW’22), a dual-degree MPH and Master of Social Work student; Graham Bartsch (SPH’22), recent SPH alum who graduated in May; MPH student Taylor Jakab; and SOMA athletes Stephanie Corazzini, Erin Delahunty, Rachel Seymour, and Alexis Sokoloff. Victoria Dinatale, manager of community engagement and fitness at SOMA, also contributed to the training program.

This work is especially impactful because people with IDD are largely underrepresented in mainstream health research, despite experiencing disproportionate health challenges, risks, and barriers to care. For the featured research topic during the training program, the athletes chose to examine their coaches’ awareness of adequate hydration levels—for the athletes and for themselves.

Several of the program participants have been SOMA athletes for decades, and they said they valued the hands-on technical skills they gained during the course. For the project, the athletes surveyed their coaches to gauge their knowledge on how many glasses of water the athletes should drink each day—and how much water the coaches themselves drink each day—and were surprised to find that the coaches’ self-reported water consumption was much lower than the recommended daily amount.

“The experience was really helpful and a fun thing to do,” said Corazzini, who has been a member of SOMA for 40 years, and has participated in sailing, cycling, bowling, basketball, boxing, and more.

Delahunty and Seymour also said they valued the hands-on exposure and technical skills they gained during the course.

“I enjoyed learning about the steps of research, picking the topic on drinking enough water and sending the survey out to the coaches,” said Seymour, who has been involved with SOMA since 2007 and plays basketball, unified track and field, and soccer. “Some of the research skills I learned were collecting data, hypotheses, asking questions, conclusions, surveys and bar graphs and line graphs.”

“It’s so important for coaches and athletes to drink a lot of water,” said Delahunty, a SOMA athlete since 2006 on the ski, track, softball, and soccer teams. “I enjoyed learning about this and would like to continue doing this type of research.”

Kirova, who is pursuing the CAPDIE certificate at SPH and helped design and conduct the course as part of her practicum, said she was drawn to the project because it raises the voices of marginalized groups and advances disability health research in a way that is meaningful to the IDD population.

“A lot of research that is about people with intellectual disabilities is not run or designed by people with intellectual disabilities, and that is a huge gap, so this project was really important from a public health perspective,” she says. “The Special Olympics athletes love their coaches—they were really excited to pick the topic of hydration, and they were really invested in the work.”

Hear more about this project from the SPH students and alums, and SOMA athletes, during APHA’s Health Access and Education Provider Poster Session 2 from 1-2 p.m. on Tuesday, Nov. 8.