Overview of the Health Systems Node

Leads:
Drs. Lindsay Shea & Paul Shattuck


Mission: There is little evidence that we have moved the needle on life course outcomes for Autistic youth and adults. Our goal is to develop clear metrics and foster connections among
researchers and policymakers to improve care coordination and service delivery that truly moves the needle on population-level life course outcomes.

Research Agenda: Autistic individuals and their families characterize their experiences as a “lifetime of difficult transitions” due to a limited number of service providers and resources.
Population outcomes among young adults on the autism spectrum are poor across indicators of physical health, mental health, employment, postsecondary education, community participation, independence, financial security and access to needed community services. Systems-level strategies for improving policy and program performance are needed among care coordination and service models. Specific research priorities include supporting healthcare navigation and models of transition practices, training primary care providers in the adult health system, and educating individuals and families about transition care.

Responsibilities of Health Systems ANSWER Reps

Identified Health Systems ANSWER reps will:

  • Receive an assignment to at least one active project within the Health Systems and Services node portfolio based on interest and expertise
  • Join existing project meetings and conversations related to their assigned project
  • Join monthly node meetings
  • Support decisions about data and analysis to ensure the right questions are being asked and that the results are being interpreted correctly
  • Support decisions about sharing data and results with people and organizations
  • Review research proposals and provide feedback on assigned projects and other active projects across node

We are looking for individuals with the following experience:

  • Autistic/Neurodivergent lived experience AND prior graduate-level training.

Preferred Qualifications for Health Systems ANSWER Reps:

  • People with Autistic lived experience/self-advocates
  • Holds a doctorate (e.g., PhD), master’s (e.g., MPH), or equivalent degree OR is actively enrolled in a degree-granting graduate program (Masters or Phd)
  • Experience with broad-based secondary data management, analysis, interpretation, and dissemination
  • Interest in health care system navigation, care coordination, and service delivery, including models of care transition practices, training providers, and educating individuals and families about care transitions
  • Interest in understanding indicators (e.g., physical health, mental health, employment, postsecondary education, community participation, independence, financial security and access to needed community services) of outcomes for Autistic youth and adults and their families
  • Expertise in health services or policy research and developing systems-level strategies to improve population-level outcomes across the life course
  • Interest in reproductive health service use and care delivery
  • Interest in autism and aging, including associated co-occurring neurologic conditions