Research Manager Holland Bloorview Kids Rehabilitation Hospital
Background: Learning health networks (LHNs) offer a promising solution to improve the quality and efficiency of healthcare by integrating clinical and research data. The Autism Care Network (ACNet) is an LHN composed of 20 clinics across the United States and Canada dedicated to developing the most effective approach to care for autistic children. Many autistic patients receive their ongoing care in the community; therefore, it is essential that the ACNet extend to include community physicians. Objective: The primary objectives were to (1) understand the current data collection practices, learning needs, clinic capacity, areas of improvement, and overall interest of community providers in participating in an LHN; and (2) identify community providers’ perspectives on the benefits and disadvantages of participating in a LHN and ways to support their engagement. Design/Methods: In-depth semi-structured interviews were conducted with participants who were purposively sampled from community providers who had participated in autism-focused educational programming. The interview guide was developed by the three ACNet sites based on experience with LHNs and working with community physicians. The data were analyzed by two independent coders using an interpretative phenomenological analysis approach with a social constructivist paradigm. Results: Analysis of 29 interviews identified 5 primary themes: (1) “Navigating Administrative Challenges,” the lack of time, resources, and administrative capacity in the community that impact physicians’ ability to provide care and potentially participate in a LHN; (2) “Improving Data Collection Practices”, wherein most community physicians do not have a consistent way of collecting information and are seeking a comprehensive standardized tool; (3) “Increasing Provider Confidence and Competence,” the challenges of navigating the ever-changing landscape of autism care as a community physician; (4) “Breaking Down Silos”, which focused on fragmented care and the lack of communication between allied health resources, diagnostic hubs, and community physicians; and (5) “Systemic and Societal Barriers to Achieving Best Practices”, which explored the systemic barriers that exist for both physicians and families and ultimately impact autism care in the community.
Conclusion(s): Our findings suggest that LHNs have the potential to address several of the issues in providing community-based autism care. Additionally, LHNs can play an important role in improving community care in fields beyond autism.
