Background: While several studies have validated the efficacy of improved training and coordination in the delivery of prenatal and neonatal services, there has been little input from patients and stakeholder groups to inform research to improve prenatal and neonatal care.
Proposed Solution: This project will leverage PCORI best practices and methodologies for engaging patients, family members, informal caregivers, community-based stakeholders, and the broader healthcare and academic communities to develop the capacity to develop, implement, and share knowledge developed through PCOR/CER to improve the health of pregnant women and their unborn babies as well as to improve the efficacy and efficiency of the delivery process.
Objectives: The main objectives are to: build capacity to conduct patient-centered CER related to maternal health and delivery in rural populations; develop a process for patients and stakeholders conducting CER within the targeted population; and develop and implement methods to sustain the relationships during and beyond the project.
Activities: A project leadership group comprised of the Project Lead, patients, clinicians, and stakeholder will: adopt and apply the PCORI Methodology Standards to maximize patient-centeredness and engagement; leverage PCORI’s Engagement Rubric to facilitate effective town hall listening tours for pregnant women, family members, stakeholders, clinicians, and researchers across west central Indiana; host a half-day focus group with participants to develop a five-year plan for conducting CER within the target population and region; invite participants to be part of a stakeholder advisory group to carry out the five-year plan and participate in the design, implementation, and dissemination of PCOR and CER studies.
Outcomes and Outputs: First, the project team will establish a functioning network of patients and stakeholders to prepare them for the development of a collaborative effort to conduct PCOR/CER to address the unmet healthcare needs of pregnant women and their newborns. Second, the team will develop research questions and a five-year research plan for PCOR/CER work around this topic that is informed by and perceived as having value by the entire community. Third, the researchers will establish protocols to sustain the advisory group and collaboration during and after this engagement effort to support future PCOR/CER with the community and broader audiences.
Patient and Stakeholder Engagement Plan: The project team will engage patients and stakeholders by: mentoring at least two patients as members of the project leadership team; training patients on the PCOR/CER research process and giving them experience working with clinicians and researchers; engaging new patients, family members, and community-based stakeholders during the semi-annual town hall listening tours; and building and sustaining the advisory group that will include at least 51 percent patients.
Project Collaborators: Collaborators include the Rural Health Innovation Collaborative, patient partners and stakeholders, clinical providers at Union Health Union Medical Group (physicians), Hamilton Center (mental health), Valley Professionals Community Health Center (FQHC) as well as other provider groups, the City of Terre Haute including its economic development and rural health departments, the Area Health Education Center, and academic partners from Indiana State University, Indiana University School of Medicine, and Ivy Tech Community College.