Background: Substance use disorders (SUD) during pregnancy are associated with an increased risk of pregnancy complications and adverse outcomes among offspring. Therefore, utilization of prenatal care (PNC) is important for women with an SUD, and there is an urgent need for studies to identify barriers to PNC within this population. The perspectives of women with SUD on PNC utilization and other areas are frequently missing from research.
Proposed Solution to the Problem: To increase engagement of stakeholders with lived experience of substance use during pregnancy in PCOR/CER, this project will convene a collaborative of diverse patient, clinical, community, state, and academic stakeholders.
Objectives: Create a sustainable collaborative led by stakeholders with mutual trust, collaborations, and research capacity to design and implement PCOR/CER focused on substance use and PNC. Identify the capacity needs of patient, clinician, community, and academic stakeholder groups to participate in PCOR/CER. Identify and summarize best practices for recruiting, engaging, and collaborating with stakeholders. Identify and prioritize patient-centered research questions.
Activities: A stakeholder engagement capacity survey will be used to elicit stakeholder feedback regarding perceived barriers to online participation in the proposed project. Online peer learning labs will introduce stakeholders to fundamentals of PCOR/CER. A collective patient journey map will be created to guide, facilitate, and center the patient experience in the development of the deliverables of the proposed project. All-in meeting sessions will be hosted through Zoom to develop the proposed project’s deliverables.
Projected Outcomes and Outputs: The project team will identify stakeholders’ perceived barriers to project engagement using survey methods. Stakeholders will learn fundamentals of PCOR/CER and how to participate and host online meetings.
The synergy and collaboration born from the proposed project will be leveraged to maintain a long-standing stakeholder-led advisory board that will act as a platform for future PCOR/CER initiatives related to SUD during pregnancy.
Outputs include: stakeholder capacity needs report, stakeholder engagement roadmap, and patient-centered research priority report.
Patient and Stakeholder Engagement Plan: The patient and stakeholder engagement plan for the proposed project is based upon PCORI’s four engagement principles: reciprocal relationships; co-learning; partnership; and transparency, honesty, and trust.
Stakeholders will be actively engaged in project activities multiple times per month through online peer learning labs, virtual community building events, and all-in meeting sessions.
Project Collaborators: Cincinnati Children’s Hospital Medical Center, University of Cincinnati, Brandeis University, patient, community, academic, and clinical stakeholders