Giving Participants a Voice

When researchers with the University of Minnesota Bakken Center for Spirituality & Healing’s Integrative Health & Wellbeing Research Program set out last year to help people manage their back and neck pain, they knew they needed to gather ample feedback from participants in their pilot study. The project, Partners4Pain, was designed to better serve people from racial, ethnic, or income groups that are often left out of clinical studies — and the team needed to understand what barriers stood in the way, including the types of experiences they have had in the healthcare system.

“Sometimes [healthcare providers] will give a printout,” one respondent told them. “But it’s never anything that people can really use, that’s going to carry them beyond the icing and heating and pills. You need a little bit more.”

Now, with a wealth of insight from participants of a recent pilot study, the team is preparing to launch a larger study involving 400 people. Supported by a $4.5 million grant from the National Center for Complementary and Integrative Health and the National Institute of Neurological Disorders and Stroke, the team will test and refine two programs that help participants benefit from practices such as mindfulness, pain coping strategies, meditation, progressive muscle relaxation, exercise, and more. The goal is to provide an alternative or complement to drug-based treatments, which can lead to unwanted side-effects, poor outcomes, addiction, and overdoses, which disproportionately affect minoritized communities.

Dr. Roni Evans, director of the IHWRP, and her colleague Dr. Brent Leininger, associate professor, know from experience that community engagement takes real work. As the leaders of the Partners4Pain project, they have been dedicating time and energy to developing relationships out in the community, listening to people’s stories and involving them in the research process — steps that the IHWRP team wants to make a standard part of their research process going forward.

They have had help along the way. Members of the Community Advisory Team have played a crucial role in connecting the researchers to community leaders, media outlets, and community events to better reach people with lived experiences out in the community. 

“They have been invaluable to us as researchers,” Evans said. “They have served as coaches and mentors for our team. They’ve educated us, provided guidance, and really supported us in a myriad of ways.”

Giving a Voice to All

From the start of the project, the research team was determined to ensure all participants would have their voice heard and ideas considered. In practice, that meant going beyond a simple survey at the end of the study; they needed to seek input at multiple stages in the process. Before the study even started, the team interviewed people to learn about their experiences getting care for their back and neck pain. They used that information, in conjunction with the best existing research, to design the two programs.

“Am I getting the kind of medical care here without people’s biases and without what they’ve presupposed about me?” said one respondent. “That’s what happens when you are a person of color in America and you want equal access to quality care.”

That comment resonated with Evans and Leininger, leading them to reflect on their own biases and actions as healthcare professionals and researchers. It was clear that it needed to be a priority to really listen to — and hear — what participants said.

“We made it a big priority to train our whole research team on how to work in partnership with patients and to examine all areas of our research where this can apply,” Evans said. “I don’t like to use the word ‘transformative’ too much, but this project has really been that for me, personally as a researcher, and for our team.”

During the pilot study, the team asked for more input, listening to participants’ first-hand experiences to fine-tune each of the programs. They also collected surveys that asked participants what they thought about different aspects of the program and how they felt they were treated.

Then, after the pilot study, Evans and Leininger welcomed participants back for a get-together and discussion, to thank them in person and share the results of the study as well as hear any questions or additional feedback they had.

“This is the first time I have done this as a researcher,” Evans said. “It was so illuminating and, frankly, humbling. They offered ideas and perspectives that I really hadn’t considered before and had so much good input that we decided we are going to invite past study participants to serve on a Participant Engagement Group starting next year as part of the bigger study.”

Expanding the Scope

As a result of the pilot study, more than 80% of participants reported that their pain improved and over 95% felt that study staff worked in partnership with them. 

With the project off to a promising start, the research team is now screening participants for the larger study, which will begin this winter. Over the next two or three years, they plan to bring additional participants in on a rolling basis. While the study already has established a presence in North Minneapolis, Evans hopes to expand it to include participation in St. Paul and other areas.

Wherever the study goes, the community engagement will follow. Reaching a diverse group of participants will ensure the research takes into account the needs and experiences of people with different backgrounds, and that, in turn, can shape the two pain management programs to be more beneficial to a greater number of people. Evans said the team is excited to build additional partnerships with the Latino, Hmong, and Somali communities in the Twin Cities, as well as to reach more men.

Ultimately, her vision is for future versions of the pain management programs to be picked up by a variety of community-based organizations. If widely adopted, the programs could give a much larger number of people the agency to take action around their chronic pain and regain a higher quality of life.

“I liked knowing that there is hope… [in] making a difference with my pain,” one participant said during the pilot study. “Pain can stop you from living.”

Another participant echoed this sentiment.

“It showed me that I was not as broken, body-wise or mentally, as I thought I was.”