Data Integration in Learning Health Care Systems for Traumatic Brain Injury: Proceedings of a Workshop (2024)

Corinne Peek-Asa, University of California, San Diego; Workshop Chair; Cochair, Forum on Traumatic Brain Injury

• Underscore the challenges that arise from fragmented and uncoordinated care, and the significance of health information exchange for improving the patient experience and supporting better outcomes.
• Discussion Questions:
  • How does the fragmentation of health care records affect a patient’s care, recovery, emotional well-being, and confidence in the health care system?
  • How can the voice and experiences of TBI survivors be more integrated into the development of health information exchange systems?
  • Based on the voices and experiences of TBI survivors, what recommendations should health care providers and policy makers consider to ensure that TBI patients receive cohesive and coordinated care?

Corinne Peek-Asa, University of California, San Diego; Workshop Chair; Cochair, Forum on Traumatic Brain Injury

• Articulate the priority research questions and care needs that learning health care systems help to address.
• Explore how different partners and stakeholders support and engage with learning health care systems.
• Discussion Questions:
  • How can organizations think of an LHS more strategically and in ways that move innovation forward?
  • What infrastructure is needed to make LHS solutions more accessible?
  • What partnerships are needed to help learning health care systems implement evidence-based care delivery innovations?
  • What strategies are needed to ensure that data drives policy, and that policy drives continuous improvement in care and research systems?

• Highlight illustrative examples of how learning health systems for TBI support care delivery, improve health outcomes, and expand research opportunities.
• Discussion Questions
  • In these examples, what key achievements for research and care have been observed because of the integrated linkages between care, research, and continuous learning?
  • Across these examples of learning health care systems, what common challenges arise? What strategies are being deployed to address them?
  • What are the key lessons learned?

• Understand how the CDC performs data capture and surveillance to inform public health strategies and support community-based care.
• Explore how state brain health programs partner with learning health care systems to identify TBI survivors and create linkages to community services.
• Hear a high-level overview of the VA’s approach to harnessing learning health care systems to enhance community care for veterans with TBI.

• Discussion Questions:
  • What LHS-based programs exemplify a successful execution of data capture and surveillance leading to material improvements in how survivors are supported via community-based care?
  • What are some key lessons learned?
  • From the perspective of public health and community-based care, what do we need from learning health care systems that currently is not in place, and why is this a priority?
  • How can data insights from such diverse entities as CDC, state departments, and VA be integrated to form a more cohesive and holistic LHS for TBI community care?

• Examine strategies to build and enhance the capacity of community systems to respond to and manage brain injuries, especially in geographic regions or among demographic groups that are underserved.

• Discussion Questions:
  • What are the current gaps in TBI awareness and education for patients and providers?
  • Why is building community capacity for TBI community care essential, and what is needed from learning health care systems to facilitate this?
  • How might LHS-based solutions improve health outcomes for vulnerable populations of TBI-injured people—including those who are rurally located, are survivors of intimate-partner violence, or are incarcerated?
  • For vulnerable patient populations with limited access to specialized care centers, what are the greatest barriers in the way of accessing LHS-based solutions locally?