Overview of the Big Data Working Group

Drs. Lindsay Shea & Emily Hotez

The AIR-P Big Data Working group focuses on utilizing survey, secondary, and administrative data to investigate and promote the physical health of Autistic individuals across the life course and the lifespan. The purpose of this working group is threefold: 1) To foster research collaborations across the AIR-P Steering Committee, ANSWER, Scholars, and the CREs; 2) To leverage the potential of new and innovative datasets and linkages in informing the field of autism and physical health; and 3) To facilitate collaborative, analytic, and methodological
advances and training opportunities for investigators.

Concerning workflow, an AIR-P researcher can submit an idea for a Big Data autism/physical health project to the working group, the working group will review and identify needed
resources, and the researcher & working group will collaborate on the analysis and resulting manuscript (with co-authorship established upfront).

Beyond this workstream, the Working Group will regularly discuss Big Data issues and emerging research, develop and lead webinars or training sessions, and/or operate in a consultancy capacity to support the AIR-P in leveraging the potential of Big Data.

Examples of Big Data sources include but are not limited to Medicare/Medicaid; National Autism Data; All Payer Claims Databases, Medical Expenditures Panel and other national Surveys; TriNetx; Kaiser, etc.

Responsibilities of Big Data ANSWER Reps

The Big Data Working Group is seeking 2 ANSWER reps to participate in the following activities:

  1. Provide consultation and feedback on Big Data research questions and projects within the Network
  2. Contribute to and/or lead training in Big Data methods/approaches, including webinars and/or outreach activities across the Network
  3. Lead article/research discussions related to Big Data during regular Big Data Working Group meetings.

As members of the AIR-P, all ANSWER reps are eligible to propose and lead Big Data projects and will receive support within the Big Data Working Group.

In terms of time commitment, ANSWER reps are invited to participate in the following:

  • The Big Data Working Group meetings (1x/month)
  • Quarterly AIR-P consultancy meetings (1x/quarter)
  • Potential ad-hoc project-based meetings (~1-2x month)
  • Big Data Working Group presentations or trainings (~1-2x/year)
  • Asynchronous feedback on Big Data projects and initiatives as they develop and advance

We are looking for individuals with the following experience:

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

Preferred Qualifications

  • Interest and/or experience in secondary data analysis, Big Data approaches, and related topics.
  • Interest in collaborating on Big Data projects by offering continuous feedback on projects (synchronously and asynchronously) and contributing to manuscripts as a co-author
  • Interest in leading a Big Data project and collaborating with Big Data Working Group members in the process
  • Interest in supporting investigators in making sure their projects align with the needs, experiences, and priorities of Autistic communities.