Lessons Learned from Developing a Patient Engagement Panel: An OCHIN Report.

There is renewed interest in patient engagement in clinical and research settings, creating a need for documenting and publishing lessons learned from efforts to meaningfully engage patients. This article describes early lessons learned from the development of OCHIN's Patient Engagement Panel (PEP). OCHIN supports a national network of more than 300 community health centers (CHCs) and other primary care settings that serve over 1.5 million patients annually across nearly 20 states. The PEP was conceived in 2009 to harness the CHC tradition of patient engagement in this new era of patient-centered outcomes research and to ensure that patients were engaged throughout the life cycle of our research projects, from conception to dissemination. Developed by clinicians and researchers within our practice-based research network, recruitment of patients to serve as PEP members began in early 2012. The PEP currently has a membership of 18 patients from 3 states. Over the past 24 months, the PEP has been involved with 12 projects. We describe developing the PEP and challenges and lessons learned (eg, recruitment, funding model, creating value for patient partners, compensation). These lessons learned are relevant not only for research but also for patient engagement in quality improvement efforts and other clinical initiatives.

Use of qualitative methods and user-centered design to develop customized health information technology tools within federally qualified health centers to keep children insured.

Lack of health insurance negatively impacts children's health. Despite federal initiatives to expand children's coverage and accelerate state outreach efforts, millions of US children remain uninsured or experience frequent gaps in coverage. Most current efforts to enroll and retain eligible children in public insurance programs take place outside of the health care system. This study is a partnership between patients' families, medical informaticists, federally qualified health center (FQHC) staff, and researchers to build and test information technology tools to help FQHCs reach uninsured children and those at risk for losing coverage.