MGH partners with community for research on aging

Goal to help older Black adults manage chronic pain and cognitive decline

A new Boston-based research project is looking at the intersection of chronic pain and early cognitive decline in older Black adults in the Boston metro area.

The effort represents a push by a study team at Massachusetts General Hospital to partner with communities in the research and to focus on education and strategies to help older adults manage chronic pain and memory-related problems — two issues that Fatima Fontes, a clinical research coordinator at MGH working on the study, said many don’t realize can be intertwined.

“While they’re sitting and dwelling on this pain that they don’t know why it’s happening or why it’s continuing, they’re … hindering their cognition by sitting and dwelling and not being active, not doing mind games — things we know are evidence-based to help cognition in older life,” Fontes said.

Over the course of the study — called the “Healthy Aging as Black Adults: In it Together” or the “HABIT” Study — the research team plans to work with about 400 Black adults over 50, working with them for a 12-week session of one of two programs that show potential for helping reduce chronic pain and cognitive decline.

The first, called “Active Living Every Day,” is an existing program designed to help identify barriers to activity in everyday life and develop habits around staying active.

The other, called “Mindfulness-based Cognitive Therapy plus walking” builds off existing programming that uses methods like meditation in addition to cognitive behavioral therapy, but in the design of Ana-Maria Vranceanu, one of the study’s principal investigators, also incorporates walking as a way to maintain and improve mobility.

The team is currently in the process of tailoring the materials for the mindfulness-based program to best serve the Black communities they are looking to reach.

A team approach

The research is a close collaboration between Mass General Hospital and community groups. Both Roxbury-based The Wellness Collaborative and Cambridge-based Community Conversations: Sister to Sister have been involved in shaping the study, its outreach and materials.

Leaders from both groups are co-principal investigators on the project.

That kind of teamwork is signature for The Wellness Collaborative, which works through the lens of an interdisciplinary framework, said Karen Craddock, one of TWC’s executive directors. She serves as a co-principal investigator in the HABIT study.

“How can we be a partner and a player in a particular way where research has influence and impact on our communities?” she said.

The partnerships have helped shape the design of the study and will, the team hopes, help bridge trust in recruiting participants for the study, said Marie Nzeyimana, another clinical research coordinator on the study.

Already, the partnerships have guided the process of updating and tailoring the materials for the program, including the “Mindfulness-based Cognitive Therapy plus walking” handbook.

“Because they work directly with the Black communities here in Boston and the Greater Boston area, their input allows us to make sure that the material we’re putting out is going to best serve the community itself,” Nzeyimana said.

With researchers of color working as leadership and staff on the study, the team hopes to build trust between communities and researchers from an institution that has a legacy of being largely white.

According to numbers released by Mass General Brigham, across the hospital system, employees in 2020 were about 65% white. A 2021 article in the Journal of the American Medical Association estimated that, nationwide, the health care industry was about 60% white. (Mass General Brigham is a little more diverse than the general population of the state of Massachusetts, though, which is just shy of 69% white).

“We acknowledge that we’re coming from MGH and it’s still a white institution, even now, despite many great efforts towards diversity,” Nzeyimana said. “Making sure that we are providing competent care to our communities, our community partners are really, really integral to that step for our study.”

Craddock of TWC said that including community voices in the work from the very beginning, alongside an approach of community-based research, is an important component for trust-building.

“We know, historically, in the industry of health care, and in the arena of clinical research, there’s an understandable and longstanding issue of hurt and harm that has happened, particularly for Black and brown communities,” Craddock said.

The study also aims to physically get out of Mass General’s campus, bringing the sessions for the two interventions into community spaces like public libraries or community centers in Black communities in and around Boston. Fontes also pointed to other work by Community Conversations, one of the partner organizations, which included talking with community members in spaces like hair salons.

“We’re making sure these are areas people are familiar with. We’re trying to keep them in their comfort zone, not making them feel like they have to travel 45 minutes to downtown Boston to an MGH building to do these group sessions,” Fontes said. “Rather, they’re right there in the community where they’re familiar with, where they host their own community events at.”

Study goals

Over the 12 weeks of each intervention, the study aims to identify which program is more effective at handling physical function, pain management and memory challenges, and then revisit after six months to see how the improvements have been maintained.

But it is also focused on longevity and stability. A third goal is to train community-based peer coaches and create a system through which the more effective program can continue to be taught to older Black adults in the Boston area, Fontes said.

“The big point is to really to create a strategy and a stability plan to be able to really implement the more effective program in the community way after the research study is done,” Fontes said.

The community partner organizations have been instrumental in laying the groundwork for that, she said.

“They’re the ones coming up with the stability plan and the implementation to make this program more effective in the community after we’re done,” Fontes said.

Craddock said she views the work as going beyond a “one-and-done,” looking to use the work to embed what is learned in the community and its resources.

“This pathway to research is always considering the ‘who,’ alongside the ‘how,’ and always for the ‘how long,’ right?” Craddock said. “This is about sustainability.”