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ATRP Table Talks: How can we use big data to achieve health equity for transition aged autistic youth?

October 3, 2023 @ 12:00 pm - 1:00 pm

Join researchers from the Autism Transitions Research Project (ATRP) for a round table, and critical conversation, discussing ATRP and how we are using big data to figure out how young adults navigate the path to adulthood. We will be discussing our work with big data and inviting critical dialogue to help guide this important work into a place of true health equity.

ATRP researchers are working towards centering the needs, experiences, and perspectives of diverse groups, so we can find the information that can make healthcare and the process of growing up better for all.

Topics

  • Understanding big data
  • What is data democracy?
  • What is data and health equity?
  • Using research to change the transition service landscape

Register Here 

Submit your questions for the panelists 

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Discussion Facilitators

Ed-Dee-Williams

Ed-Dee Williams PhD

Boston College

I joined the faculty at Boston College School of Social Work in 2023.My current line of research specifically examines the mental health help-seeking behaviors of Black autistic transition aged youth experiencing depression, and developing technology-based interventions to support their mental health needs. My expertise includes the use of community-engaged research methods, and mixed-method methodologies in intervention development that specifically look to address the mental health needs of Black youth. I have used these various methodologies to develop a thorough understanding of Black youth’s help-seeking behaviors and mental health needs. My expertise has allowed me to support and counsel researchers in ways of improving their programs of research to better target and support the needs of Black youth.

Kristy-Anderson

Kristy Anderson, PhD

Florida State University

I am a Research Scientist at Florida State University, having received my PhD in Social Welfare at the University of Wisconsin, Madison. I am committed to research that has the potential to inform policies and practices that promote equity and justice among socially vulnerable and historically marginalized communities. My interdisciplinary program of research examines the causes, consequences, and response to health inequities among adolescents and emerging adults with disabilities. My research encompasses two primary areas: 1) exploring the prevalence, distribution, and determinants of economic hardship among autistic children and adults with single and multiple disadvantaged social identities and 2) identifying factors that influence disparate health outcomes and social determinants across the life course, with particular attention to the role of Medicaid and antipoverty programs. My work is grounded in life course frameworks, systems theory, and critical social science. I use a variety of statistical methods to analyze administrative and survey data and complement these analyses with qualitative inquiry.

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Teal W. Benevides, PhD, MS, OTR/L

Augusta University

My background as an occupational therapist and researcher has centered on the systems and contexts which promote or inhibit access to healthcare for individuals on the autism spectrum and related developmental disabilities, particularly among marginalized groups, including racial/ethnic minorities and those with cooccurring mental health conditions. I have been grant funded from 2013-present to evaluate health outcomes and disparities. The proposed ATRP is benefited by my expertise in health services research evaluating service delivery systems and policies and my ability to promote stakeholder-centric projects that ensure autistic people are central to the research team, as well as my expertise leveraging large data sets including Medicare data. The ATRP would be enhanced through my currently funded work on two different PCORI-funded teams, allowing synergy and involvement of those project stakeholders (PCORI EASC-00241 and PCORI SP-2020C3- 20951), as well as collaborations with organizations through which ATRP products could be disseminated.

Jessica-Rast

Jessica Rast, PhD

A.J. Drexel Autism Institute

I am an epidemiologist in training (PhD(c)) and a health services researcher focusing on the needs, services, and outcomes of autistic individuals. I lead efforts at the A.J. Drexel Autism Institute to collect, catalogue, and analyze national sources of data that include information about the experiences of individuals on the autism spectrum, and more broadly about individuals with disabilities. Dissemination is an important part of my work, where we focus on adding both to the scientific discourse and to the non-scientific audience that uses data for decision making. Our ongoing report series, the National Autism Indicators Reports, is written for non-scientific audience on a variety of topics to help inform policy and programmatic improvements. I have also worked to expand my knowledge in analytic methods. I have a strong record in analysis of secondary data and further my skills through professional development and formal courses through the Ph.D. program. I have published papers using propensity score matching and latent class analysis, prepared manuscripts and grants with multi-level modeling and machine learning techniques, including boosted regression and decision trees. These experiences and skills position me well to support the work proposed in this ATRP grant.

Anne-Roux

Anne Roux, MPH

A.J. Drexel Autism Institute

I am a Research Scientist and Director of Policy Impact at the A.J. Drexel Autism Institute’s Life Course Outcomes Research Program at Drexel University. My research focuses on the investigation of life course outcomes of autistic transition-age youth and young adults – highlighting systems-level issues, equity within diagnostic and transition processes, and postsecondary employment and education. Additionally, I apply my training in health communication to the translation of research into products that inform decisions about federal and state programs and policies. In 2015, I produced the inaugural edition of the award-winning National Autism Indicators Report series, Transition into Young Adulthood, which was named by the NIH Interagency Autism Coordinating Committee (IACC) as one of the top 20 autism science achievements of 2015, followed by a nomination of our report on Vocational Rehabilitation. My lead-authored scientific publications, including a seminal paper on employment outcomes for young adults with autism, have appeared in high-impact journals such as the Journal of the American Academy of Child and Adolescent Psychiatry, American Journal of Preventive Medicine, Journal of Autism and Developmental Disorders, Autism Research, and the Journal of Vocational Rehabilitation. I will contribute to this ATRP grant via my knowledge of services, systems and policies that facilitate the transition to adulthood; insights gained from leading the Transition Odyssey pilot study for our ATRP grant (publications in submission); and extensive skills in dissemination strategies.

Lindsay-Shea

Lindsay Shea, DrPH, MS

A.J. Drexel Autism Institute

I am a health services researcher who focuses on research that directly informs policy and services aimed at improving quality of life for autistic individuals. My research utilizes large administrative data sets as well as original surveys and other primary data collection to examine prevalence, outcomes, policy, service delivery factors, and patient-centered needs assessments with an emphasis on the transition into adulthood. I have led several large-scale projects (described in Section E below). I led a statewide collaborative focused on academic-provider partnerships for over 10 years.

Wei-Song

Wei Song

A.J. Drexel Autism Institute

I will be a research scientist at the A.J. Drexel Autism Institute starting July 2022. My research applies the social model of disability and focuses on how intrinsic and environmental factors are related to community participation and inclusion of autistic individuals across the lifespan. I have extensive knowledge in survey research with complex samples, measurement development and validation, and advanced data analysis in disability research. I will contribute to this ATRP grant via my knowledge of data-driven approaches in better understanding community participation and identifying key facilitators and barriers among autistic transition-age youth; insights gained from leading multiple studies in community participation; and solid skills in disseminating findings, including peer-reviewed publications and reports for policymakers.

Details

Date:
October 3, 2023
Time:
12:00 pm - 1:00 pm