A Deliberative Approach to Develop Autism Data Collection in Massachusetts

Researchers from the University of Massachusetts Medical School (UMMS) Eunice Kennedy Shriver Center will lead a Citizen’s Jury deliberative approach to develop priorities for an integrated autism data system in Massachusetts. The Massachusetts Executive Office of Health and Human Services is the project sponsor.

The state agency is seeking the public’s input into the design of an integrated data system to track diagnosis, treatment, services, and outcomes of individuals with autism in order to improve coordination of care and disseminate information. The research team will convene a 24 member Citizen’s Jury, including individuals on the autism spectrum. Using a mix of face to face and on-line interaction, they will learn about and deliberate about the multiple perspectives related to privacy, control of individual data, and the use of integrated data sets to improve health outcomes research and policy development.

This is an innovative demonstration of the use of a Citizen’s Jury approach in a mixed population with disability. Clinical and communication supports will be provided to ensure successful participation by all members. Evaluators will examine process and outcome measures, including the revised Discourse Quality Index. The results of the deliberation will be presented to Executive Office of Health and Human Services in a written and video summary.

The researchers are being supported by the Autistic Self-Advocacy Network, with funding from the Agency for Healthcare Research and Quality.

Our Executive Director, Kyle Bozentko, will serve in an advisory capacity on this project, assisting in the development of the Citizen’s Jury.