Introduction: The TransforMN Study's goal is to understand the process by which primary care practices are transformed into patient-centered medical homes (PCMH). Because patients and providers are key stakeholders in the PCMH, it has been important to solicit input from them systematically during every stage of project implementation.
Methods: We purposefully developed a plan and structure for including patients and clinicians in the study. To find the patients, we relied on study collaborators at MDH to recommend individuals from the MDH Health Care Home Consumer & Family Advisory Council. We selected 10 diverse study clinics representing different sizes, locations and affiliations and interviewed 2-5 leaders at each clinic about their transformation experience. We recruited both groups using direct, personal contact (e-mail, phone and in-person) to participate as advisors to the study.
Results: Our study coordinating team includes two paid patient representatives with experience as patient and family advocates in the health care system. We regularly engage them on specific study questions, including how better to include patients in research. Our study Advisory Board consists of 8 clinicians and 5 managers who are both study participants and who provide input on interim findings, study processes and materials, and reports to clinics.
Discussion/Conclusions: Successfully including input from patients and clinicians in research studies requires a plan for finding the people; a structure for inviting organized participation; a budget that will support their contributions; and an understanding that relationships with these important contributors matter if research studies are to be meaningful to them.