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The Patient Engaged Research Center's Sustainable Funding Framework: A Path Towards Sustainable Patient Engagement in
Paige Coyne1,2,3, Leah Copeland1, Dana Murphy1
1Department of Public Health Sciences Henry Ford Health Detroit Michigan USA.
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.
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