What do you think about the collection and use of information about

people with autism?

Please click on the link below to share your opinion in a brief (5-10 minute),
anonymous survey.
https://www.surveymonkey.com/s/AUTISM_INFO_MATTERS
In 2013, the Massachusetts Governors Special Commission on Autism issued a
report that included a recommendation for the state of Massachusetts to establish
and manage an integrated confidential data system among state agencies and
stakeholders to track [autism] diagnosis, treatment, services, and outcomes in
order to improve coordination of care and disseminate information.
This survey will gather public opinion in Massachusetts about the use of information
about people with autism as part of a project at the University of Massachusetts
Medical Schools Eunice Kennedy Shriver Center and in partnership with the Autistic
Self Advocacy Network. The results of this survey will be used to help develop
recommendations to the Massachusetts Executive Office of Health and Human
Services as it moves forward in developing and refining its data systems.
BE PART OF A CITIZENs JURY
In addition to a statewide survey, this project will also hold face-to-face meetings of
a group of people interested in this topic (a 'Citizens Jury') on the weekends of
September 19 and October 3rd, 2015. Hotel accommodations will be provided. This
is your chance to discuss develop recommendations on the many complex issues
related to data use, research, and people with autism. Make sure your voice is
heard! At least half of the Citizen Jury participants will be people who are on the
autism spectrum.
The last page of the survey provides additional detail and sign-up information, or
you can go directly to this link. https://www.surveymonkey.com/s/Citizen_Jury_signup
If you have questions about this survey, or would like the survey in another format
(print or over the phone) please contact the project's Principal Investigator, Alixe
Bonardi at Alexandra.Bonardi@umassmed.edu 774-455-6522.
This project is funded by Agency for Healthcare Research and Quality (AHRQ) Grant
number 1R21HS023577