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 datasets 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.

Public Health Relevance

This project will develop guidance for the Massachusetts Executive Office of Health and Human Services on priorities for autism data collection, management and use from the perspective of the autism community. Researchers at the University of Massachusetts Medical School's E.K. Shriver Center will convene a Citizen's Jury that includes people with autism and other stakeholder to deliberate on the complex issues related to use of data for the purpose of coordinating support, improving research, and the issues of privacy and confidentiality of personal data. The outcome of this work will be a set of priorities for use when developing an integrated autism data system in Massachusetts. This process will also demonstrate the use of a Citizen's Jury to engage a stakeholder's early on in the policy development.

Agency
National Institute of Health (NIH)
Type
Exploratory/Developmental Grants (R21)
Project #
1R21HS023577-01
Application #
8803611
Study Section
Special Emphasis Panel (ZHS1)
Program Officer
Siegel, Joanna
Project Start
Project End
Budget Start
Budget End
Support Year
1
Fiscal Year
2014
Total Cost
Indirect Cost
Name
University of Massachusetts Medical School Worcester
Department
Pediatrics
Type
Schools of Medicine
DUNS #
City
Worcester
State
MA
Country
United States
Zip Code
01655