Patient action groups center lived experience of those with hypertension

Through CEAL’s Maternal Health Community Implementation Program (MH-CIP), researchers from the University of North Carolina at Chapel Hill (UNC) are infusing community engagement in a project to improve care for hypertension in pregnancy. In a recent case study, researchers laid out how they increased the involvement of people with lived experience in their work, sharing their approach, its impact, and lessons learned.

As they started Phase II of their work, the team planned to increase the focus on respectful care, patient engagement, and education. Recognizing the importance of lived experience in the research process, the UNC team developed two patient action groups, or PAGs, comprising people with lived experience of hypertensive disorders of pregnancy and representing the demographic groups most impacted by these high blood pressure conditions. Unlike more common models of patient advisory boards, which often play a more consultive role, the PAGs served as active co-creators of processes and products. The case study outlines the principles, practices, and impact of intentional co-creation with people with lived experience.

The researchers’ findings

Through the process of standing up and embedding the PAGs, the team identified some key takeaways and lessons learned:

• PAGs can play a role in power-shifting, ensuring that people most impacted by a disease or condition are centered as respected members of research teams.
• In working with communities, research must “move at the speed of trust,” adapting traditional research processes to prioritize reciprocal engagement and buy-in.
• Members of the PAGs brought such value to the work that their roles sometimes extended beyond those initially planned, which in turn strengthened their guidance and engagement.

The evidence-based opportunities

• Studies without enough funding to support PAGs can find other meaningful ways to practice reciprocal engagement. These can include publicly recognizing partners’ expertise and skills and providing a chance for them to advance professionally or personally.
• Individual team members dedicated to community engagement (e.g., a community engagement manager) can help foster the safe space needed to bridge community and research.

The authors concluded that integrating the perspectives of people with lived experience strengthened research processes, informed clinician-focused trainings, and underscored the importance of community engagement in implementation science.