Engaging diverse patients, families, and communities as partners in community mental health disparities research: Lessons learned from inclusion of Mexican immigrants in the Central New Jersey Partnership to Improve Perinatal Depression Care

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 In this chapter we describe this first phase of establishing a patient and stakeholder-engaged research partnership to address gaps and improve systems of care for perinatal mood disorders (PMD) in NJ. We describe what we did, how we did it, what we learned, and next steps beyond the planning year. Over the course of 1 year, we identified and convened stakeholders, patients, and families multiple times and steadily expanded the size and composition of the group as we learned more about the scope of the problem, who is impacted by it, and who can impact change. We conducted interviews, listening sessions, and community conversations to include patients from different ethnic and racial groups, and carried out document reviews to uncover gaps in detection and treatment. We learned that, in spite of the universal screening mandates and funding for referrals in NJ, significant gaps persist for all moms, and through our frequent meetings and conversations, came to understand that barriers to identifying and treating PMD operated were especially acute among Mexican immigrant moms and they operated at multiple levels to limit access to care–individual, provider, and systems levels. As we sought to include the voices of a high risk and underserved population of Mexican immigrant families and secure their trust, we encountered unique challenges that led us to employ innovative strategies that emerged out of local conditions unique to this community. We uncovered and relied on grass-roots networks–both formal and informal–to access Mexican immigrant families, and we used community conversations and story-telling as primary methods to engage and give voice to their unique perspectives. We also heard from local leaders of a grass-roots, self-help organization and learned about locally trained community health workers (promotoras) who address the needs of Mexican immigrant families from a strengths-based perspective and with limited access resources. Through local promotoras who participated in a training on PMD that we provided, community conversations led by promotoras attracted Mexican immigrant moms and their families to participate in these meetings and share their perspectives on maternal mental health and well-being. Through these grass-roots networks, we overcame barriers to trust and inclusion and we secured the participation of the grass-roots immigrant-serving organization as a member of the stakeholder group as well as a parent who was a survivor of perinatal depression. As a result of these efforts, we overcame barriers to trust and inclusion with this highly vulnerable population and by the end of the year, we included a patient survivor from the Mexican immigrant community and the director of the community-based grass-roots organization as members of the stakeholder group. At the final convening of the partnership group, we identified and endorsed patient-defined outcomes and possible interventions that formed the basis for a proposal currently under consideration by PCORI for a comparative effectiveness study of alternative interventions to increase treatment engagement for PMD and an assessment of the relative effectiveness of different interventions for different racial and ethnic groups. We conclude that finding local, trusted self-help networks is an important strategy to address mental health disparities, and employing community conversations and listening sessions are effective means to engage vulnerable populations in partnered participatory research.