Pathways to Partnership: Helping Patients and Researchers Communicate

Sometimes, despite our best intentions, researchers aren’t aware of the needs and wants of the patients who volunteer to let us study their lives. And many of those people might feel too intimidated by the alphabet soup of degrees that follow their doctors’ names to speak up when they have a concern.

In New Mexico, this problem is more complicated. New Mexico is a large state when measured in miles but a very small one when it comes to the research community. Often, clinicians and researchers at the University of New Mexico are the only ones in the state with deep expertise in certain health issues. Patients and their families can be hesitant to question suggestions for care because they’re scared of alienating their physician.

We want to change this dynamic and improve patients’ health and experience. Our goal is to improve brain and behavioral health for all New Mexicans through research better informed by, and more responsive to, their needs.

Through a Eugene Washington PCORI Engagement Award, we implemented a program to improve communication and collaboration skills between two groups: University of New Mexico researchers and clinicians, and community stakeholder groups of patients, family members, advocates, and others. We did so in partnership with the Alan Alda Center for Communicating Science, which uses improvisational theater activities to help scientists learn to talk to the public. (See box below, Supporting Better Communication)

We realized these methods would be good not only for the scientists talking to community members about their research, but for breaking down power differentials and improving community members’ communication of their needs to researchers.

Building Trust and Breaking Assumptions

To try out our idea, we hosted three intensive workshops, each focused on a different brain condition: Alzheimer’s disease, autism spectrum disorder, and a very rare, sometimes catastrophic condition called cerebral cavernous malformation, which is unusually prevalent in New Mexico. For two days, Alda Center representatives led each group in improvisational activities designed to help community members and researchers build trust and develop two-way communication. During these sessions, there were opportunities to explore barriers patients and their families face when searching for treatment, as well as the timelines and constraints of research. On the third day, we held a structured and active brainstorming session on patient-centered research ideas for the future.

We hoped that at the end of each workshop, all participants would feel more comfortable talking with those outside their community. We were thrilled with the participants’ success, and there were also beautiful ripple effects we didn’t anticipate.

When you equalize communication between participants you can transform organizations, you can transform attitudes, and you can transform health.

For some researchers, our training was the first time they’d met a patient who lived with the condition they studied. Likewise, many patients and families told us they had never met scientists working on their conditions. In our work group on autism spectrum disorder, people who disagreed with or disliked each other because of past experiences or differences of opinion on treatment sat together to learn. They may not have become best friends, but they listened to one another.

Each group came away with a clear understanding that they were on the same team. The Alda Center training combined with our patient-centered outcomes focus energized our participants to the extent that all three groups are still meeting, even though the formal PCORI-funded project has ended. They are working towards creating research questions that they may submit for PCORI funding.

Creating Sustainable Change

Beyond these groups, we believe that our project has changed the culture of research at the University of New Mexico Health Sciences Center. Our success led the university to become an Alda Center affiliate to run trainings for scientists and clinicians across the Health Sciences Center. Our goal is to help more than 800 faculty members learn how to better communicate with each other as well as with patients and other stakeholders. We’re seeing this approach spread—at Boston University’s Medical School, for example, researchers are piloting our modified version of the Alda Center’s training with community members and medical students, potentially bringing up a cohort of physicians who have excellent communication skills.

We’re working to create a sustainable and permanent change in the culture at our university to carry out research that values the contributions patients and community members can make and is relevant to their needs.

Moving everyday communication into a research setting is extraordinarily challenging. There is a tremendous variety of expertise that patients, families, advocates, and others bring, as well as a tremendous variety of expertise that can address meaningful problems in research. Often, though, people don’t have the skills to meet each other where they can truly hear each other. These issues deserve attention. When you equalize communication between participants you can transform organizations, you can transform attitudes, and you can transform health.

The views expressed here are those of the authors and not necessarily those of PCORI.