Background: It is historically difficult to manage, engage, and increase self-support for complex care patients challenged by comorbidities, rural environments, low incomes, and psychosocial complexity. To address the needs of high-need, high-cost patients, health systems have implemented patient-centered medical homes and community health worker-led efforts to better stabilize patients and reduce fragmentation of care. While these models have seen some success, they are rarely informed by patients and caregivers who encounter actual lived barriers to care. Research on care model effectiveness in rural and frontier populations is especially thin with little available evidence that incorporates the priorities and perceptions of patients and caregivers. Further advancement of care models will require engaging this population in patient-centered outcomes research (PCOR) and increasing patient, provider, policy maker and payer knowledge.
Proposed Solution: Kalispell Regional Medical Center in Kalispell, Montana will build on previous experience through CMS and RWJF to engage complex care patients to develop patient-centered research questions and a PCOR comparative effectiveness research agenda. The project team will utilize qualitative methods (three focus groups) to elicit stakeholder input on appropriate PCOR questions, interventions to be tested, and appropriate mechanisms of PCOR engagement.
Objectives: To build and strengthen capacity to be involved in and conduct PCOR related to high-need, high-cost patients by understanding their engagement priorities, learning how to best engage the population in PCOR, assessing feasibility and acceptability of mechanisms of interventions that can be tested in CER by identifying key barriers to PCOR participation including those in the psychosocial domain.
Activities: Utilization of qualitative methods supported by a core stakeholder advisory group (including patient/caregivers) by recruiting and conducting focus groups made up of people who have experience with rural barriers to better outcomes: providers/clinicians, patients/caregivers (three or more chronic diseases, low income, rural environment, 18 years and older), and community health workers.
Outcomes and Outputs
- Increased knowledge about stakeholder roles in PCOR and CER and barriers to participation and preferred engagement methods among complex patients.
- A roadmap that will lay out a five-year plan.
- Development of two or more products.
- A network of stakeholders who are prepared to collaboratively conduct PCOR that will address healthcare needs of medically complex individuals.
- Successful concurrence on communication methods, goals, and standing agenda items.
- A sustainable research agenda and network of medically complex patients, community-based organizations, and health system and community policy makers committed to and capable of conducting and disseminating CER to improve patient outcomes and health care.
Patient and Stakeholder Engagement Plan: The project team envisions a highly participatory, multisector stakeholder group that includes patients/caregivers and community health workers serving as equitable members. The stakeholder group will recruit and incentivize three focus groups, providing meeting stipends and transportation and communication methods, if needed. Stakeholders and focus group participants will also share equal credit and ownership of all project output and deliverables.
Project Collaborators: The team’s key partners are Community Action Partnership, Sunburst Mental Health Services, Flathead City-County Health Department, North Valley Hospital, ASSIST, Glacier View Research Institute, Mountain Pacific Quality Health, The Summit Medical Fitness Center, Patient and Family Advisory Council, Northwest Montana Care Transitions Coalition, patient partners, and caregivers.