Engaging the ASD Community in PCOR/CER

Background: Deficits in adaptive skills and disruptive problem behaviors in children with autism spectrum disorders (ASD) are routinely treated with intensive behavioral interventions, the gold standard being Applied Behavior Analysis (ABA). Treatment for children with ASD is typically delivered in-person in the child’s home, in a clinic, or in the child’s school. Families have expressed dissatisfaction with care options for ASD, including the burden of traveling to a clinic, difficulty obtaining in-home care due to travel distances for providers as well as local provider shortages that result in long waitlists. Presently, there is no established mechanism for engaging the ASD community in patient-centered outcomes research (PCOR) to identify what is most meaningful with respect to service delivery models for ABA treatment, including telehealth. Further, patients and families do not have an established platform to engage directly with providers, funders, and researchers to share information on what is most important to their health outcomes.

Solution: The project team plans to build upon existing local and national relationships with families, providers, researchers, and insurers to create a stakeholder collaborative to build local and large-scale capacity for PCOR/CER for ASD treatment.

Aims: The following aims will strengthen the existing ASD stakeholder relationships:

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.

Activities: The team will achieve its project aims by holding monthly stakeholder meetings via videoconference to inform 1:1 stakeholder telephone interviews, survey creation, dissemination, timing, format (e.g., electronic, paper), and data collection from stakeholders. These data will be used to inform patient priorities and develop a research agenda and a five-year plan.

Outcomes and Impact: The team will have a network of ASD patients, community-based provider organizations, and healthcare payers committed to and capable of conducting and disseminating CER to improve patient outcomes and health care. Outcomes include:
• An established network of key stakeholders (i.e., patients and caregivers of individuals with ASD, providers, researchers, and healthcare payers) who are prepared to collaboratively conduct PCOR that will address the healthcare needs of individuals with ASD
• Findings from this engagement project will be synthesized to report the barriers, facilitators, and patient-driven research priorities.
• Develop a PCOR and CER research agenda and a five-year research plan

Engagement Plan: Patients and their families with ASD will be involved at each step of the project, including planning and refining the communication plan; recruitment of participants from the broader stakeholder communities for 1:1 interviews, development of and implementation of questionnaires, and identifying PCOR priorities. Engagement will occur monthly.