Written by Amanda Terry, PhD, MPH, MA, Unite Us, Emily Frost, MPH, CD(DONA), March of Dimes, Kathryn Mitchell, MPH, March of Dimes, and Halima Ahmadi-Montecalvo, PhD, MPH, Unite Us
Describing her prenatal care experience, Tonjanic, a Houston mom with twins stated, “They didn’t ask me how was I doing? How did I feel? Did I have any concerns? And that was a concern for me.” After experiencing a previous pregnancy loss, Tonjanic was placed on bed rest at 13 weeks and had to quit her job. She reported feeling “trapped” by her circumstances and anxious about her babies’ health. And like so many pregnant people in the United States (US) she felt her voice, her needs, and her priorities were not heard by the providers caring for her during her pregnancy.
In both clinical care and public health policy in the U.S. there remains a lack of recognition of lived experience as expertise. In other words, policies and medical decision making are often made for and about individuals and communities without their input. At the same time, inequities in maternal and infant mortality and birth outcomes have persisted for decades indicating that, simply put, we’re missing the mark. To address maternal and child health inequities, a focus on the importance of social and systemic drivers of maternal and child health inequities, grounded within an ecological framework that prioritizes lived expertise and community voice, is needed.
As more of the healthcare industry shifts focus toward community solutions to improve health outcomes (e.g. cross-sector collaboration and coordinated care) it has become clear that much of this work follows a top-down approach, perpetuating power dynamics that place “experts” above “community.” This dynamic makes it difficult to achieve broad and inclusive partnerships, as power imbalances often preclude trust. In this commentary, we will share strategies and early lessons learned from a unique non-profit-private partnership between March of Dimes’ Collective Impact initiatives and Unite Us’ cross-sector collaboration software, to help answer some of these questions.
March of Dimes Collective Impact Initiatives and Unite Us Partnership
March of Dimes is a national nonprofit leader in maternal and infant health. Their Local Collective Impact Initiatives mobilize cross-sector organizations and community members locally to address the underlying challenges impacting families while deploying strategies to improve rates of preterm birth and maternal mortality. Currently deployed across six communities in the US, this work is ongoing and follows the Tamarack Institute’s Collective Impact (CI) phases.
The March of Dimes partnered with Unite Us, a leading technology company that enables community-based organizations the ability to communicate with each other and local service providers to improve whole-person health and well-being, to provide the technical infrastructure to support care coordination for its Collective Impact Initiatives. In doing so, both organizations discovered they have similar approaches to engaging in community-based work.
Ecological Framework to Drive Systems Change
One of those approaches is employing an ecological framework that recognizes that individuals navigate between multiple, interconnected social, cultural, and economic contexts. These contexts are considered when developing multilevel community based interventions, and the literature consistently favors this approach. Integrating an ecological perspective of the community context, and a commitment to work in partnership with community members, groups, and settings in the local community, helps researchers and public health practitioners implement successful health promotion interventions. As the health care industry looks toward multilevel community-based interventions to drive better health outcomes, we are sharing those strategies that have proven successful for our respective organizations, both within and beyond the current Collective Impact partnership.
Strategies for Successful Community-Based Interventions
First, Listen. Spend time understanding history and context. March of Dimes’ Collective Impact Directors and Unite Us Community Engagement teams are afforded dedicated time to explore historical context and perspectives from community members, leaders, and organizations. Since much of our health is informed by structural and institutional policies, community beliefs, and cultural values, community interventions require local policy research, review of past and current “community health needs assessments,” and most importantly, conversations with community members (those closest to the issue). You cannot build community trust and ownership without clear insight into both the strengths and assets of a community and the historical barriers they face
Make a long term commitment and remain patient. This work takes years, not months. By its very nature, maternal health work is intergenerational and requires an intergenerational commitment to see real and lasting change. Simply “dropping” a program or tool into a community, then walking away, cannot be successful on its own. Communities must be co-owners to carry the work forward.
Center Equity. Begin with a shared vision that represents all engaged partners. It is also critical when engaging in community work to intentionally shift the balance of power, placing community members in leadership positions, co-designing interventions and strategies at every step, and recognizing the need to offer stipends, honorariums, or other support (e.g. child care and transportation) that will enable authentic and accessible community participation.
Create a Culture of Learning. We don’t know what we don’t know. This work is about being open, actively seeking new information, and iteratively adapting. A core value for both March of Dimes and Unite Us is to lean into hard conversations. To do this effectively, March of Dimes Collective Impact Directors receive Results Based Facilitation (RBF) training to help them learn skills around effective meeting facilitation, developing meeting agendas to move teams to action, and navigating through conflict.
Improve equitable access to data and information. Understanding how many people are engaged, enter services or receive a social or health care referral is important information. However, if we are striving to see population level change we need to gain a better understanding of the quality of care and services provided, the outcomes of those services, and visibility into the entire care journey for each individual.
The Merits of Embedding Program Evaluation: Implications for Program Evaluation
Evaluation as a component to any public health intervention is perhaps as important to its success as program planning and design. Traditionally, program evaluation has been seen as an outside and objective activity, with evaluators positioned as experts and final decision-makers. Both March of Dimes and Unite Us use a developmental evaluation approach wherein the evaluator is seen as a part of the project team, incorporated into program design and implementation, and data are collectively gathered and interpreted as the program is iteratively modified. Program teams and community members, in addition to the evaluator, play a role in evaluation goal-setting and recommendations, with an emphasis on learning, innovation, change, and power-sharing. This is in line with the community-engaged approach outlined above, and is part of a paradigm shift in the broader evaluation community; moving from seeing evaluation as an outside, objective, bias-free activity, to understanding that “evaluations cannot be culture free” and traditional definitions of validity and rigor center dominant cultures.
While we see strong value in community-centered models to address health inequities, we also recognize that implementing community-led systems change is not without its challenges. The strategies outlined in this commentary are meant to remind organizations, health systems, and providers that in order to spur and sustain improved intergenerational health, the work must begin locally. In the context of maternal and child health, this is perhaps even more critical as parenting and the role of “mother” places unique demands on individuals and their health. Their experiences, perspectives, and priorities must be front and center at all stages of program planning, implementation, and evaluation, to ensure those expected to benefit from the program, are co-designers.
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About Unite Us
Unite Us is the nation’s leading software company bringing sectors together to improve the health and well-being of communities. We drive the collaboration to identify, deliver, and pay for services that impact whole-person health. Through Unite Us’ national network and software, community-based organizations, government agencies, and healthcare organizations are all connected to better collaborate to meet the needs of the individuals in their communities.