Moving from Principle to Practice: A Researcher’s Guide to Co-Leading with Community Partners and Patients with Lived Experience to Reduce Maternal Mortality and Morbidity for Maternal Sepsis

Abstract

Objectives

Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the planning phase of a phased federally funded grant using community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research.

Methods

This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice.

Results

Based on the authors’ experience, recommendations are provided for funders, researchers, and institutions to improve the operationalization of these partnerships. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for forming partnerships.

Conclusions

In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey.

Purpose

Maternal mortality and morbidity disproportionately affect birthing people from systematically marginalized minority groups. These poor outcomes are often compounded by researchers through a lack of authentic community engagement (characterized by working with and not for communities), potentially adding to community mistrust of medical and research institutions. As a result, maternal health studies often lack patient voice and community guidance. Involving patients and communities in research is an effective and equitable approach to achieving a greater understanding of the root causes of inequities and disparities in healthcare.(Carman et al., 2013; Hemphill et al., 2020; Perfetto, Harris, Mullins, & dosReis, 2018) However, research involving the people most affected by the issue often excludes their perspectives.(Palmer-Wackerly, Krok, Dailey, Kight, & Krieger, 2014) Maternal health research will significantly benefit from patient and community engagement.

Community-engaged research (CEnR) is a research approach driven by collaboration between researchers and communities.(Anderson et al., 2015; Wallerstein et al., 2020) This approach elevates the inclusion and involvement of community members not simply as research subjects but as critical, autonomous partners who aid in making the research more culturally relevant, patient-centered, and equitable; it is shown to improve intervention and implementation outcomes.(Lucero et al., 2020) Community involvement in research has been promoted by the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA) to improve health, equity, and research approaches.(Clinical and Translational Science Awards Consortium. Community Engagement Key Function Committee. Task Force on the Principles of Community Engagement., 2011) Although the level of involvement with community partners varies, more interest has been shown to include community members in advisory boards and as collaborators.

This article details the planning phase of a phased federally funded grant using community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research.

Background

The United States has the highest rate of maternal mortality of all developed nations.(“Commonwealth fund,”) Maternal sepsis is a leading cause of maternal mortality in the United States and globally.(Trost SL, 2022; “World Health Organization,”) Disparities strongly contribute to maternal mortality, with pregnancy-related mortality ratios for Black and American Indian/Alaska Native patients at three and twice as high as White patients.(Petersen et al., 2019) Maternal sepsis rates are higher in birthing people who are Black, Hispanic, Asian/Pacific Islander, and Native American. (Kendle, Salemi, Tanner, & Louis, 2019) To improve the care for patients with sepsis, we wanted to engage those most affected by maternal sepsis and disparities as co-leaders to reduce disparities and maternal mortality and morbidity from sepsis.

The Grant Funding

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) issued a request for applications (RFA) entitled “Community Engaged Research on Pregnancy-Related and Associated Infections and Sepsis Morbidity and Mortality” sought to “support interdisciplinary community-engaged research designed to reduce infections and sepsis as causes of Pregnancy-Related or Associated Morbidity and Mortality (PRAMM) in the United States.”(“NICHD,”) The grant was designed as a two-phased award. Phase one consisted of a planning grant phase with the transition to the multi-state implementation of a maternal sepsis bundle of care practices to improve care. Phase two was designed for the actual implementation of the full-scale clinical study. The following sections describe both phases after the grant was funded.

Phase One: Planning Phase

The planning grant phase was structured to create the Maternal Sepsis Community Leadership Board (MSCLB) and obtain feedback for each stage of the research throughout implementation. Principal Investigator Melissa Bauer D.O., and community engagement liaison Kendra L. Smith, Ph.D, MPH developed the initial approach to this phase. The community engagement liaison is also a co-investigator for the project, further affirming our commitment to community involvement. The funding mechanism that afforded the planning phase was critical to the success of this project, providing an opportunity to start our work with our community partners in earnest and nurture the relationships.

The community-engaged approach allowed us to create a reflexive process that acknowledged and reduced power differentials between all partners and was equity-centered. Reflexivity involves continuous, critical reflection on participants’ positionality and power differentials in a CEnR environment and how that influences the experience and outcomes.(Goemans, Levkoe, Andrée, Changfoot, & Christopherson-Cote, 2019) Moreover, we aimed to adhere to the principles of CEnR of transparency, building trust, sustained engagement, and shared leadership. Successful community engagement includes 1) meaningful input from community partners, 2) willingness by researchers to co-create, and 3) flexibility with preconceived notions for the project to allow modification through feedback. Leveraging Dr. Smith’s expertise in community engagement, she created a framework founded on these principles to be built upon with the incoming community partners.

Recruitment and Creation of the Maternal Sepsis Community Leadership Board

The purpose of the MSCLB was to serve as an equal partner with investigators for all stages of this project, guiding the development of the study from the planning phase to the implementation phase. It was important to invite people with experience in multiple areas who had experience in equitable community engagement and a vast network to plug in to support our future dissemination efforts. The leadership board was envisioned to comprise 12–14 people with lived experience of maternal sepsis, patient advocates, public health experts, birth equity advocates, and those engaged in their communities to reduce disparities and improve maternal health. We looked for patients with lived experience who could share their expertise from two perspectives: a) how they experienced the symptoms of the disease as a patient and b) their observations of the medical care team recognizing and responding to sepsis. To find these crucial members, we invited non-profit organizations (End Sepsis Foundation and Sepsis Alliance) to suggest representatives with lived experience, an interest in health equity, and a desire to share their stories. These lived experience consultants were crucial to the Board.

In addition, we asked Sepsis Alliance to provide a sepsis advocate to serve in an advocacy role for patients with sepsis. This allowed us to draw on the overall knowledge and experience of the organization and its advocacy strategies. To provide partnership to reduce disparities in race/ethnicity and geographical quality of care, it was important to include a diverse membership of those who identified as Black, Hispanic, Indigenous, and other racialized and marginalized groups. Representatives from urban and rural geographical areas were also sought. Overall, the MSCLB comprised members with diverse lived experiences, varied professional experience in public and community health and healthcare, and different types of education; however, each member had at least a bachelor’s degree. Table 1 reflects the expertise, experience, and diversity of the MSCLB. It took two months to recruit and establish the MSCLB. All members were provided a ‘Welcome Letter’ that described their role, expected monthly commitment, and compensation.

Table 1:

Maternal Sepsis Community Leadership Board Characteristics

Role and Unique perspective as self-described by Maternal Sepsis Community Leadership Board Member	Education	Race/Ethnicity	Location
Maternal Sepsis Lived Experience Consultant: educates health care providers about her story to teach the importance of listening to patients and educates patients about warning signs of sepsis. Maternal Sepsis Spokeswoman and Board Member for End Sepsis Foundation: The Legacy of Rory Staunton	MA	Hispanic	Texas
Maternal Sepsis Lived Experience Consultant: advocates for Equitable Care and Respectful Care. Focused on increasing patients’ access to quality care and support. Dedicated to educating about the importance of listening to patients.	MBA	Black/African American	Texas
Maternal Sepsis Survivor, Patient Perspective, works to educate health care providers about her story and that sepsis presents differently in pregnant and postpartum patients, empowers patients to advocate for themselves, Works with Sepsis Alliance to create provider and patient education videos	BA	Native Hawaiian/Asian/Hispanic	California
Maternal Child Health Expert with particular focus on health equity. More than 30 years of experience in direct clinical service and state public health administration. Public health expert with a health equity lens and lived experience as a patient within the health system	RD, MBA	Black/African American	Michigan
Public Health Expert and System Change Leader with a focus on equity	BSN, MPH	Black/African American	Michigan
Social work and health disparities researcher with lived experience as a survivor of postpartum cardiomyopathy, and within the local community as a board member for a birth equity non-profit organization.	MSW, PhD	Black/African American	North Carolina
Former labor and delivery nurse, former public health instructor at Wayne State University, a medical anthropologist, and researcher for over 30 years in perinatal health and birth outcome disparities. Special emphasis is on Bias, Structural Racism and Discrimination, and the impact it has on health outcomes with a focus on prevention, barriers, and facilitators for change.	BSN, MPH, PhD	Black/African American	Michigan
Community member who has navigated rural maternal healthcare as a patient, provides perspective of barriers that rural patients may encounter.	BS, CLC	White	Michigan
Nursing and Public Health experience (22 years). Her focus is to decrease disparities and improve health and well-being for low-income clients, mostly from historically marginalized communities. Also dedicated to recruiting, hiring, retaining a workforce that is reflective of the patients served.	RN, MS, PHN	White	California
Public Health Nurse with 11 years of experience focused on improving the health and well-being of women, infants, children, adolescents, and families. Convenor of community stakeholders and partners to address health inequities and support system change. Dedicated to reducing maternal and infant morbidity and mortality.	RN, BSN, PHN	Hispanic	California
National patient advocacy organization representative (Sepsis Alliance)	MA, MPP	White	California-based national organization
Practicing nurse midwife, qualitative researcher, community-based participatory research content expertise, and policy advocate, national leader on American Indian/Alaska Native maternal, child, infant, family and community health, lived experience as a Salish & Kootenai Indigenous woman	CNM, PhD	Native American/American Indian	California
Enrolled member of Sault Sainte Marie Tribe of Chippewa Indians and provides perspective of barriers to equitable care experienced within that community and rural communities	RN, MSN	Native American/American Indian	Michigan

The final component of the MSCLB was to leverage representatives in California and Michigan, already engaged in their communities, to reduce disparities and improve maternal health. These individuals have been involved at the local and state level in providing education and advocating for policy changes to improve care. The Michigan Department of Health and Human Services (MDHHS) supports the Southeast Michigan Perinatal Quality Improvement Coalition (SEMPQIC). SEMPQIC is a Regional Perinatal Quality Collaborative created to improve equity in perinatal care and reduce disparities in maternal and infant mortality. We invited two leaders from this coalition to join the MSCLB. We also invited the Inter-Tribal Council of Michigan to provide a representative with experience in maternal health. To obtain a rural health representative, contacts involved in community health in rural areas of Michigan were approached to provide representation. In California, we contacted public health departments in multiple geographic areas to suggest a member with experience in equity work and community engagement. Additionally, the California Maternal Quality Care Collaborative (CMQCC) is engaged with multiple organizations due to prior health equity work and disseminated a description of the MSCLB to help find suitable candidates. Finally, we sought a health equity scholar at Duke University, the Principal Investigator’s home institution, to participate and help build collaboration.

After seating all our MSCLB members, our next goal was to onboard them. Onboarding included orientation, community building, addressing equity within our group, and co-developing a group charter. Our community liaison, Dr. Smith, co-led this endeavor with the Principal Investigator. Orientation to the project included introductions from the project team and MSCLB, a detailed overview of what was in the original grant by the Principal Investigator, discussions about the project, and the co-development of MSCLB goals to fold into the overall project. Community building happened throughout the first several meetings, including using a portion of the meetings to connect on non-project-related items such as successes, plans for a holiday, or exciting news to share. Moreover, ample time was provided for MSCLB members to share their experiences and ask questions about sepsis care.

We addressed equity within our group by acknowledging and reducing power differentials within and across the study. In the initial meeting, community members and patients with lived experience were affirmed as equal research team members. They could contribute their expertise by identifying barriers to care, unique barriers in geographic areas such as urban and rural spaces, recruitment activities, and dissemination of information within their communities (Figure 1). The power differentials we addressed were potential concerns the MSCLB might have about voicing their opinion or providing feedback, expectations of how their feedback would be integrated, and preferred methods to engage with other study collaborators, like physician-scientists. To ensure that MSCLB feedback was properly integrated, Dr. Smith, the community engagement liaison, helped create a feedback loop to set expectations for how to coordinate suggestions and associated responses to support transparency and accountability. (Figure 2) Notably, the agreement focused on how the principal and co-investigators will consider MSCLB feedback and suggestions.

Figure 1.

Venn Diagram of contributions of Community Partners, Clinician Scientists, and Patients with Lived Experience

Figure 2.

Maternal Sepsis Community Leadership Board Feedback Integration Model

Finally, the MSCLB created a charter to outline the immediate goals, long-term goals, and expectations of all MSCLB members. The Principal Investigator and Community Engagement Liaison developed the first section of the charter, which included information from the grant, such as the project overview, goals, important dates, plan for filling vacancies, and MSCLB structure. The MSCLB co-developed the second section of the charter, which included details about MSCLB goals, member expectations of the project team, conflict management, compensation, and meeting cadence. We settled that the MSCLB would meet once a month via Zoom on a set schedule.

The budgeted amount for compensation for each MSCLB member was $1500: $75 per hour for an estimated 20-hour commitment. This 20 hour covers twelve one-hour virtual meetings and eight hours to prepare for the meetings (reading articles, providing input to manuscripts, and creating questions for qualitative interview guides). Once the MSCLB was formed, the budgeted compensation was discussed, agreed upon, and established for the MSCLB members, who were paid twice a year. Pay structures for community participation are critically important but are traditionally challenged at academic institutions for various [documented] reasons: issues with funding mechanisms or institutional standards/structure; devaluing community expertise and lacking community input; and poor administrative mechanisms to support paying community members or partners.(Black et al., 2013; Israel et al., 2005; Viswanathan et al., 2004) Study incentives for participants vary widely in projects, ranging from $10 to $200 an hour for community expertise.(Black et al., 2013; Israel et al., 2005; Viswanathan et al., 2004)

Integrated Community and Patient Co-leadership with Researchers

The planning grant phase included qualitative interviews and focus groups for the following purposes: 1) To identify patient-based barriers to care through interviews/focus groups with maternal sepsis survivors, family members of those who lost someone to maternal sepsis, sepsis advocacy representatives, and equitable care advocates; and 2) To identify barriers to implementation of the maternal sepsis safety bundle through interviews/focus groups with physicians, nurses, midwives, and administrators. After identifying the barriers, the MSCLB and research team worked together to modify care practices and interventions for sepsis and create implementation strategies based on the themes obtained from the focus groups/interviews.

The MSCLB worked with a qualitative scientist to create interview and focus group guides to identify barriers to care for all pregnant people and address racial disparities that occur in care. The focus groups and interview guides were co-developed on a shared Google doc and revised in monthly meetings. Each MSLCB member provided perspectives and enhanced the guides, capturing more important details about existing barriers. The lived experience experts identified joint missed opportunities to explore, such as navigating triage, patient-provider hierarchy contributing to patients needing to advocate for themselves, and poor communication.

The lived experience experts also strongly recommended inviting a support person who was with the patient during hospitalization to provide clarity during periods when the patient may have been confused or sedated due to critical illness. Support person insight provided rich details, thereby shaping identified barriers that would have otherwise been undiscovered. The equitable care advocates provided critical questions for identifying biases in care on the basis of issues like racial bias, socioeconomic status, marital status, and location and eliciting survivors’ stories on whether they received equitable and respectful care. Members of the communities provided insight into the questions concerning rural and urban geographical barriers. All members participated in recruitment efforts and provided critical access through posting the flyer in community areas to which researchers would not usually have access (e.g., private Facebook pages for survivors, rural communities, Tribal communities, inner-city support organizations, birth equity organizations, sepsis organizations, and community-based organizations). These connections would also become critical for disseminating information and patient education during implementation.

Lessons to Be Shared

We offer the following lessons learned to help researchers practicing CEnR with direction and useful tips for enhancing their work. These lessons were gleaned from multiple sessions of reflection with the project team and MSCLB. All researchers should remember that a key feature of CEnR is the uniqueness of each community and project. Each lesson learned shared in this article should have general applicability, but some tweaking and tailoring to each setting will be necessary to fit each individual context and situation.

Prioritize Equitable Engagement

Community engagement can be essential to addressing systemic inequities found in health systems. However, the act of engaging communities in research is not a guarantee for advancing equity and reducing disparities. The opportunity that CEnR presents is through equitable engagement that empowers individuals and communities to play a critical role in being meaningfully engaged in the identification of issues and inequities and having a role in addressing them through research. In your approach to engaging with communities, we recommend prioritizing power-sharing, dedicating resources, building sustainable relationships, and practicing transparency and mutual accountability.

Improving Grant Application Planning and Writing

Funding bodies investing in community engagement projects usually expect grant applicants to have previously identified a community organization partner and collaboration on the grant application to have occurred before submission. While a partnership may exist, the expedited nature of completing grant applications within large organizations such as research universities can potentially harm this relationship. Because funds for grant writing might not be available, researchers often ask community partners to volunteer their time (e.g., meetings and writing) rather than compensating them for their work. Moreover, the grant writing process can be rushed, resulting in many challenges, including poor idea co-development, insufficient power sharing or trust built between partners in the development process, and a final grant product that does not reflect the desires of both parties.

There are two lessons learned with long and short-term implications. First, researchers practicing CEnR should become involved in long-term work of building their network to prepare them to engage with partners when the right grant competition comes along. This will foster more significant opportunities for connection, trust building, and a robust co-development process. Second, in the short-term process of developing a grant application, researchers should make a concerted effort to build a partnership and then an application representative of all parties’ ideas. This means carving out time to meet with partners multiple times and write and re-write the project idea. We also recommend approaching conversations about money and compensation early on. This includes leveraging discretionary funds to compensate for community partners’ time for grant development and financial arrangements once the grant is funded.

Strategies for Recruiting an Advisory Board

Recruiting for advisory boards can be challenging. Many questions arise about who would be best for the advisory board. Lived experience and other factors such as agreement with the project goals, a commitment to remaining engaged, and a willingness to work with others are essential. The project team should identify the desired makeup of the advisory board and should be able to explain how that makeup will potentially contribute to the goals of the project. Additionally, the project team should decide the best methods for advisory board member recruitment, selection, and orientation. Members can be recruited from the project team’s personal and professional networks, open application calls, or direct recruitment amongst individuals known to the project team.

Creating an Equitable Compensation Structure with Partners

Compensating partners for their time and expertise is essential for an equitable relationship. Challenges include a) accommodating the time frame for budget submission, b) the need to address and revise institutional standards when compensating community members, and c) discomfort with financial conversations. The first step in overcoming these challenges is to start this dialogue early with partners to determine hourly rates, payment schedules, and expectations. Next, co-creating a scope of work that details expectations is a helpful strategy. It is important to do this together to ensure that the academic perspective is not driving this process. What one thinks is equitable might not be seen as equitable for another. Before or during this process, identify institutional requirements for paying non-employees (e.g., social security number requirements, tax liabilities, payment frequency). Remain transparent in all discussions about compensation.

Navigating Institutional Barriers for Payments

Throughout the process, institutional barriers at both academic partner institutions were present. Most federal funding sources require the work to be completed before payment. When there is a continuous process of feedback and modification, it is unclear when the work has been completed to generate payment. It is unacceptable to expect community partners to work for extended periods without payment; however, most academic centers need the infrastructure to make timely, scheduled payments as they would to employees. Most require an invoice to be sent once work is completed and then time for processing. An inconsistent payment structure and delays lead to mistrust and can breed feelings of not being valued. We recommend restructuring payments for community partners different from traditional contractors to promote a sense of value and support relationship building.

Setting Clear Expectations Together

Both researchers and community members have expectations, and they should be delineated from the beginning of the project. We recommend developing a project charter that describes the project, including the project name, description, team members, team engagement expectations, deliverables, benefits, risks, budget, and milestones with dates. The charter should provide an overview of the project from inception to implementation and attach a general timeline. Additionally, there should be a plan for filling vacancies in the advisory board.

Establishing Group Authorship

Community board members may have a wide range of experience with writing manuscripts for publication, ranging from no experience to authorship on multiple publications. To allow all to participate at the level they feel comfortable, group authorship is a way to include the group meaningfully. Group authorship allows those who have contributed to the manuscript but fall short of meeting authorship requirements to be a “collaborator,” so their name will be searchable in PubMed, and recognition will be given to the board that collaborated on the manuscript. This allows those without experience who have contributed to gain experience with manuscript writing. If those with more experience have met the criteria for authorship, co-authorship should be given.

Advocating for Research Justice

Traditional grant funding structures often reinforce inequitable relationships between partners by requiring the academic partner to lead the grant application and maintain control of the funds, data, and analysis. Partnerships with community-based organizations should consider sub-award agreements and use the funding to support infrastructure to allow data collection, storage, and analysis in the hands of the community and improve research justice.(“Research Justice: a Strategic Framework to Achieve Self-determination for Marginalized Communities,”) Academic partners can be supportive by providing training for responsible conduct of research and ensuring that collection and storage meet requirements to maintain patient privacy. The phased funding structure that allowed two planning years of engagement in this project provided space and opportunities for co-creation, feedback, reflection, and improvement in our overall approach and has also yielded benefits for our partners. Funders may be willing to accept feedback surrounding strategies that allow for better engagement and higher quality of funded projects.

Limitations of Our Experience

A limitation of CEnR is the lack of uniformity across projects. Each project and community will be unique, so our lessons learned and suggestions are broad for more general applicability. This grant allowed for two years of joint planning before an implementation phase. This is an ideal format for CEnR as it allows for funding support of community members during the key start-up phases and establishes joint leadership and ownership of the project. Only some research programs will have grants structured this way, so institutions must identify funds to support community engagement during the planning stages.

Our MSCLB members all had at least some college education and substantial experience in our area of research. Our advisors’ experiences fit what was needed for this project. We identified leaders from key communities who were active in working with a wide range of public health, community-based organizations, and patient advocacy organizations. However, there are benefits to having groups with more educational, personal, lived experience, and professional diversity. Finally, having representatives from two states also broadened our community base and potential for impact.

Future Work

Our planned implementation phase will include patient and community engagement throughout. We have planned for dissemination events with co-presentation with lived experience experts, community members, and researchers from this project. In addition to researchers, lived experience experts and community members will serve on the mentorship teams for hospitals to review and improve their care for patients with sepsis. Education will be disseminated to healthcare providers, patients, and community members. To reduce maternal morbidity and mortality, it will occur through equal partnerships of patients, community, and health care providers.

Conclusion

In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey. By forging these partnerships, we can improve our communities’ health.

Significance Statement:

Community-engaged research can be an equitable approach to research that involves communities most affected by empowering them to guide the research as equal partners. This article serves as a guide for researchers to form these critical partnerships, sustain relationships, and recommend solutions to common challenges based on the reflections of the researchers and advisory board.