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A CITIZEN’S JURY TO DEVELOP POLICY PRIORITIES IN AUTISM DATA COLLECTION
ALIXE BONARDI UNIVERSITY OF MASSACHUSETTS MEDICAL SCHOOL FINN GARDINER – AUTISTIC SELF ADVOCACY NETWORK
IN THE NEXT 20 MINUTES...
Key issues related to collecting and using information about people on the autism spectrum for research and policy
Citizen’s Jury deliberative methodology and its use in Massachusetts
Summary of our initial survey in Massachusetts.
WHY COLLECT INFORMATION ABOUT PEOPLE ON THE AUTISM SPECTRUM?
To answer questions about:
• Incidence, prevalence, health disparities (surveillance)
• Genetic, metabolic, other influences on autism (biological factors related to autism)
• Impact of supports and services provided (outcomes)
AUTISM REGISTRIES IN MULTIPLE STATES • Arkansas, New Hampshire,
New Jersey, North Carolina, Minnesota, Ohio, Rhode Island, Utah, Virginia, West Virginia
• Some only monitor incidence (new cases reported)
• Voluntary vs. involuntary
• Opt-in vs. opt-out
MAP OF US REGISTRIES
IRISH AUTISM / RELATED NEURODEVELOPMENTAL DISORDERS REGISTRY AND BIO-BANK
• Broad community engagement phase to explain and recruit for the registry.
• Pilot survey – 84% agreed with developing a National Autism Data Repository.
• Important focus for registry: inform health, education, and social care aspects of service development.
• Concerns: Data privacy and protections (64%)
CONCERNS REGARDING AUTISM REGISTRIES • Privacy concerns
• Concerns about stigma if details of a diagnosis are made public
• Opt-in or opt-out?
• Data may not be complete - many people may not have diagnoses and not all doctors comply with compulsory registration
• Example of controversial registry: voluntary police registry in Newfoundland & Labrador, Canada
• ASAN’s position: opt-in registry, avoiding inaccurate and offensive language, written and informed consent for inclusion in a database
MASSACHUSETTS – INTEGRATED DATA SYSTEM
Governor’s Special Commission Relative to Autism directed the MA EOHHS to:
‘establish and manage an integrated confidential data system among state agencies and stakeholders to track diagnosis, treatment, services, and outcomes … in order to improve coordination of care and disseminate information’
LEGISLATION PENDING IN MA
• H-3770 includes $12M 5 year budget allocation to fund planning and technology needed to build an integrated data system to enhance the information available about the prevalence, service use, and outcomes of people with autism in MA.
• Stakeholder input needed EARLY in the process
MULTIPLE PERSPECTIVES, MULTIPLE STAKEHOLDERS, COMPLEX ETHICAL ISSUES … WHAT TO DO?
ENGAGE STAKEHOLDERS…and
DELIBERATE
WHAT IS DELIBERATION?
• Focused discussion to consider multiple perspectives on a topic
• Allows for the review of the “principles and values involved as well as the circumstances and consequences” of the topic of debate (Gracia 2003)
Opinion poll Focus group
Deliberative Methods
M O R E : • I N F O R M E D
I N P U T • I N T E N S E
I N V O L V E M E N T
GOALS OF DELIBERATION (KARMAN ET AL, 2011)
• Provide decision makers with understanding of public values relevant to complex issues
• Influence change at policy or program level
• Expand participants’ knowledge and insight on an issue
• Increase participants’ civic engagement and willingness to participate
MASSACHUSETTS: AUTISM INFO MATTERS CITIZEN’S JURY DELIBERATIVE APPROACH • Citizen “Jurors” review material from a range of
perspectives from “Expert Witnesses”
• Blended in-person and on-line experience
• Intense focus (over 2 weeks) encourages deep focus and engagement.
• Advisory group includes the Jefferson Center
• Target: 24 members with minimum 54% people who self-identify on the autism spectrum.
THE CITIZEN’S JURY
QUESTIONS FOR THE EXPERT WITNESSES
• What do you see as the primary purpose of autism data collection and use in Massachusetts?
• What are your biggest concerns about autism data
collection in Massachusetts?
• What has been your experience with registries or use of data collected about people with autism or other developmental disabilities?
QUESTIONS FOR THE CITIZEN’S JURY • What are the key principles that should be
followed for a data system that includes information about the population with autism receiving supports in MA?
• Should individuals be able to opt-out (partially or completely)?
• Should researchers have access to the information held by the state for analysis?
• What are acceptable reasons that data should be shared with researchers?
• How do these protections balance with the ability/utility of the data to inform key questions?
MA KNOWLEDGE/ATTITUDE SURVEY
• Knowledge and opinions about the collection, use, and sharing of information about people on the autism spectrum among state agencies.
• Citizen’s Jury recruitment: Information about Citizen’s Jury included in the survey.
NEXT STEPS AND DISCUSSION
SURVEY: Open until June 30.
Analysis and summary themes for Citizen’s Jury
RECRUITMENT: September Citizen’s Jury meeting.
• Jurors and Expert Witnesses
ACKNOWLEDGEMENTS
REFERENCES
Gracia, D. (2003). Ethical case deliberation and decision making. Med Health Care Philos, 6(3), 227–233.
Karman, KL, Pathak-Sen, E., Waddell, J., Ginsburg, M. (2011) Using Deliberative Methods to Engage Patients, Consumers, and the Public. AHRQ Community Forum. Dec 6, 2011.
Gallagher, L, Leader, G, O’Reilly, J, Daniels, A., Shih, A. Report of the Consultation for a National Registry and Biobank for Autism and Neurodevelopmental Disorders. (2014) www.iarb.ie
Massachusetts Autism Commission Final Report (2013) Available at http://www.mass.gov/eohhs/gov/commissions-and-initiatives/autism/the-massachusetts-autism-commission-final-report.html
CONTACTS
Supported by National Institutes of Health AHRQ 1R21HS023577
