A Deliberative Approach to Develop Autism Data Collection in Massachusetts

A database that tracks the diagnosis, treatment, services, and outcomes of individuals with autism could improve the coordination of care and easily convey important health information about patients. It could also help provide states with a more complete picture of the need for services, and where funding should be allocated. But, many people have also raised concerns about the need to weigh the public benefit versus the privacy of people who would be included in the database, who could face stigma.

The Massachusetts Executive Office of Health and Human Services was interested in designing an integrated data system like this, and sought the public’s input early in the process. They needed an approach that would include multiple perspectives and engage multiple stakeholders on this complex issue, so researchers from the University of Massachusetts Medical School’s Eunice Kennedy Shriver Center chose to conduct a Citizens Jury.

Partners & Funders

Researchers from the University of Massachusetts Medical School (UMMS) Eunice Kennedy Shriver Center carried out the Citizens Jury. The researchers were supported by the Autistic Self-Advocacy Network, with funding provided by the Agency for Healthcare Research and Quality and the Massachusetts Executive Office of Health and Human Services.

Design

Our Executive Director, Kyle Bozentko, assisted in the development and facilitated the 19 member Citizens Jury, which included people on the autism spectrum, parents of individuals with autism, and researchers. They met for two days, then participated in a two-week long online discussion, followed by another one-day meeting. Their comments, questions, and recommendations were compiled into a report for state officials.

Outcomes

The results of the deliberation were presented to Executive Office of Health and Human Services, and to the governor’s Autism Commission along with other state policymakers.