UMass Medical School researchers are preparing recommendations for a statewide autism database to help lawmakers, communities and service providers understand how many residents have autism to improve planning of supports and identify geographic clusters, according to an article in the Telegram & Gazette April 4.
“Maybe if we did connect the dots we could have a better picture of people with autism as a whole,” Alexandra Bonardi, MHA, OTR/L, project lead and clinical assistant professor in UMass Medical School’s Family Medicine and Community Health, told the Telegram & Gazette.
A survey and citizens jury, which included people on the autism spectrum, parents and family members, found that an autism database should contain opt-out provisions, privacy protections and researcher access only when data use is described, according to the article. A report and the recommendations will be presented to the state Autism Commission and legislators later in the spring.
The citizens jury was convened to enable those affected by autism to help set the direction for a statewide integrated database. The discussion included concerns about balancing individual and community health rights, Bonardi told the Telegram & Gazette.
“It was a process where at times it got pretty tense,” Bonardi said, “but developed a better product in the end because people listened.”
Amy K. Weinstock, director of UMass Medical School’s Autism Insurance Resource Center, said she would like a database with “much more specificity than CDC prevalence” estimates. She told the Telegram & Gazette data collection must include civil rights protections.
“My personal hope is that this will inform a thoughtful process going forward,” Weinstock told the Telegram & Gazette.