Abstract
Patient and stakeholder engagement in health improvement research is integral to identifying effective solutions that address meaningful outcomes for patients and families and that, with engagement of providers and health systems, can be rapidly translated into clinical practice. Disparities in health and well-being pose unique challenges for inclusion of marginalized populations and best practice guidelines for patient and stakeholder engagement in research partnerships require significant investment of time and knowledge-sharing to build trust and capacity for collaboration. In 2017 we received a Pipeline to Proposal (P2P) award from the Patient-centered Outcomes Research Institute (PCORI), a leading funder of patient-centered outcomes research. The purpose of this 1-year award was to engage patients, families, and key stakeholders with researchers at Rutgers University and forging a research partnership aimed at improving the systems of care for prenatal and postpartum depression in New Jersey (NJ), the first state in the nation to mandate universal screening for postpartum mood disorders in 2005. Despite universal screening and referral, mood disorders during pregnancy and the postpartum period remain underreported and undertreated in NJ, especially among minority populations. Our goal was to engage patients and other key stakeholders as integral partners in a planning process that could uncover persistent gaps in perinatal mental health care and identify relevant and realist solutions to closing these gaps. By incorporating the voices of patients with lived experiences, health care providers, and other stakeholders, we would assure that their knowledge and expertise would inform and shape our research questions and that patient-defined outcomes would drive research plans.
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