Building Infrastructure to Engage Patients, Families and Members in Research Within a Learning Health Organization
patient engagement, best practices
Background/Aims: HealthPartners is the largest consumer-governed nonprofit health care organization in the country, with a mission “to improve health and well-being in partnership with our members, patients and community.” We strive to have members, patients and families (PFM) experience us as a trusted partner, and have engaged over 30 advisory groups across the enterprise. The HealthPartners Institute for Education and Research is an integral arm of the HealthPartners learning health organization. One of the institute’s key goals is to develop strategy, processes and tools to engage PFM in all aspects of patient-centered outcomes research (PCOR).
Methods: Institute leadership prioritized the development of an infrastructure to support PFM engagement in research. A stakeholder group of three senior investigators and the Strategic Programs Manager led the effort to align with the larger HealthPartners strategy. Other resources included HMORN’s patient engagement scientific interest group, the Institute for Patient- and Family-Centered Care, the Patient-Centered Outcomes Research Institute, and the Park Nicollet Medical Group, which had recently merged with HealthPartners. The HealthPartners compliance, legal and finance teams advised on appropriate security and privacy training and financial issues. The IRB provided guidance on appropriate review and approval. Investigator team leaders were interviewed to identify priorities and gaps. Finally, a discussion was held with a patient advisory group currently serving on a PCORI-funded grant led by Dr. Leif Solberg.
Results: By joining the HealthPartners core PFM strategy team, the institute has access to a full inventory of PFM partnerships across the enterprise. A defined process and toolkit were created to recruit, interview and onboard PFM partners. Formal job descriptions and contract templates are available. A compliance guide that defines privacy and security training has been created and approved. Training for investigators and project managers will be held to share tools and best practices. The process will be piloted in an upcoming PCORI submission.
Discussion: Engaging PFM at all levels of the HealthPartners organization, including Research, is one of our core values. By designing tools and practices that have been vetted and easily adapted, we hope to streamline the process of involving these valuable partners in research.
Duncan JE. Building Infrastructure to Engage Patients, Families and Members in Research Within a Learning Health Organization. J Patient Cent Res Rev 2015;2:133-134. http://dx.doi.org/10.17294/2330-0698.1179