ABSTRACT
Background
Despite growing acknowledgement that patient engagement (PE) in research, quality improvement, and clinical care is important, models showcasing how learning health systems (LHSs) can sustain long-term PE across endeavors remain scant. Henry Ford Health’s (HFH) Patient Engaged Research Center (PERC) provides a replicable example by which other LHSs can feasibly sustain/grow PE across research, quality improvement, and clinical care in a more efficient and cohesive manner.
Methods
To support its current infrastructure, PERC obtains financial support from an array of sources, including internal health system funding, external grant funding, and philanthropic support. In addition, PERC has created a Sustainable Funding Framework (SFF) and offers à la carte patient-centered services to further diversify its funding and ensure the sustainability of PE throughout the system. PERC utilizes a four-step SFF to offer expertise in conducting patient-centered research, as well as operational and programming support for PE-related initiatives at HFH and within the broader community. The steps are as follows: awareness/need recognition, intake process (intake form, intake meeting, and invoice), project status (approval or not), and project details/start date. Example services include, but are not limited to, instrument development (surveys, moderator guides for interviews/focus groups), facilitation/transcription (surveys/interviews/focus groups), data analysis and reporting (mixed methods and qualitative), Patient Advisor recruitment and training, development/maintenance of Patient and Family Advisory Councils, placement of patient advisors on committees/councils/projects, and grant writing.
Discussion
PE in research, quality improvement, and clinical care within most health systems is often siloed and disjointed, lacking a sustainable financial or work process model. PERC’s SFF provides a promising and replicable example by which LHSs can feasibly sustain and grow PE across research, quality improvement, and clinical care delivery, as well as incorporate this data in a feedback loop to improve all three.