Background: Presently, we do not have an established mechanism for engaging the ASD population in patient-centered outcomes research (PCOR) to identify what is most meaningful for families, providers, researchers, and insurers with respect to telehealth-based interventions for children with ASD. Further, families, providers, and insurers do not have an established platform to engage directly with funders and researchers to share information on what is most important to their health outcomes. Aside from giving voice to affected children and families, researchers and providers would also benefit from stakeholder engagement having an avenue for sharing barriers to implementing telehealth-based ABA treatment, as well as ideas for improving patient outcomes for children with ASD. Understanding the family experience with interventions for ASD, across settings, and understanding what is considered most important will require earnest engagement with families and other key stakeholders in PCOR.
Our Solution: We plan to build upon existing local and national relationships with families, providers, researchers and insurers to create a learning collaborative that brings these key stakeholders together in a virtual format to build local and large-scale capacity for PCOR/CER for ASD treatment planning with consideration for preferences in modality of care for children affected by ASD.
Our Long Term Goals
Our long-term goal is to design and implement studies and trials that answer questions derived from patients with ASD, their caregivers, providers, and insurers about telehealth-based treatments to evaluate whether telehealth care may be able to achieve better patient outcomes. This project aims to continue to build and strengthen the existing network of regional and national ASD stakeholder communities by gaining insight in how to best engage the ASD patient population and families in PCOR through an increased understanding of patient and family engagement priorities and identifying key barriers to PCOR participation. This network will be well-positioned to undertake future PCOR projects by engaging stakeholder-identified research priorities to achieve better patient outcomes.
ASD Stakeholder Advisory Board
How We Plan To Achieve Our Goals
We aim to strengthen the existing ASD stakeholder relationships by completing the following:
Aim 1: Create a stakeholder collaborative network of patients, providers, and payers to serve as an advisory board to advance the stakeholder-identified priority items through PCOR/CER research.
Aim 2: Identify key priorities and barriers for the ASD community related to patient outcomes, family health and well-being, and clinical effectiveness standards as they relate to treatment within different service delivery models.
Aim 3: Develop PCOR/CER research questions and a five-year research agenda to address stakeholder-identified research priorities in relation to telehealth-based care.
How Are We Funded?
The engagement project described here was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN 00174).
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.
Learn more about our project and PCORI here.