Elevating Patient Voices in Maternal Health Research

The Community Engagement Alliance (CEAL) Maternal Health Community Implementation Program (MH-CIP) program comprises four research teams aimed at improving outcomes before, during, and after pregnancy. One MH-CIP research team, based at the University of North Carolina at Chapel Hill Center for Women’s Health Research, is pioneering a community-engaged approach that places patient voices at the forefront through its ACHIEVE: Community Implementation of the Severe Hypertension During Pregnancy and Postpartum Safety Bundle project. ACHIEVE supports the adoption and high-quality implementation of care practices that improve how clinicians recognize, respond to, and treat patients with severe pregnancy-related hypertension. By forming Patient Action Groups (PAGs) composed of patients who have experienced high-risk pregnancies and high blood pressure, the project ensures that interventions are evidence-based and patient-centered.

The importance of forming PAGs emerged during the planning phase of ACHIEVE, when community partners highlighted the need to directly include patient voices in their work. “We really wanted patient voices and people with lived experience with pregnancy-related hypertension,” said Narges Farahi, M.D., ACHIEVE clinical integration lead.

ACHIEVE launched two PAGs to bring together and gather insights from local populations most impacted by hypertensive disorders of pregnancy. ACHIEVE assembled one PAG through strong existing relationships and another by connecting with an established group from the UNC Chapel Hill Women’s Health Education Center, comprising several patients who had already been working together. As such, team dynamics and relationships evolved differently. The group created by ACHIEVE had fewer members at first, but slowly grew through intentional team-building strategies, whereas the long-term engagement with the extant group already felt comfortable sharing their experiences. Over time, this group’s involvement deepened as they provided valuable feedback and showed an interest in contributing to the project’s activities. As the facilitator of this group described it, "At the beginning, the group members felt like they didn’t have much to say. But when they started participating and they realized that what we were looking for was their experiences, their self-esteem as individuals and as a group really grew.”

As ACHIEVE moved forward, the team recognized the importance of tailoring engagement approaches to reveal insights on patient-provider communication. 

Both PAGs meet regularly to discuss and provide feedback on various aspects of the project. For example, each group has directly created and, when needed, revised the language included in provider- and patient-oriented guides designed to improve communication between health care providers and patients. Their insight has highlighted the importance of listening to patients and their companions, addressing language barriers, and other aspects of respectful care. A notable contribution from the PAG was the suggestion to add more pauses for patient questions, along with a call for more resources that share health information in different languages. This insight has been instrumental in shaping provider guides that aim to model respectful and effective communication in health care settings. 

The PAGs have also co-created and reviewed materials, such as a hypertension community workshop, a tool to assess respectful care, and a manuscript, that contribute to community education and dissemination of the work. Researchers and community partners have ensured that the groups’ voices are heard and integrated into ACHIEVE, highlighting the collaborative nature of their work. A critical aspect of the ACHIEVE project is maintaining a feedback loop with PAG members. PAG facilitators emphasized the importance of informing PAG members how their input is used so they see the tangible impact of their contributions. 

The dedicated efforts of ACHIEVE’s researchers and community partners have been pivotal in building trust and empowering communities to contribute meaningfully to maternal health research. As the project continues to evolve, the insights and experiences of women with lived experience of high-risk pregnancies and pregnancy-related hypertension will remain at the heart of its success in driving improvements in maternal health outcomes. This approach also offers a model for advancing community-engaged research across other health areas, ensuring that patient and community voices inform interventions and lead to more effective outcomes.