On a Wednesday evening in downtown Salt Lake City, Julie Fritz, PhD, a professor of physical therapy and athletic training at University of Utah Health, gathered with about a dozen people that she had never met but with whom she had something in common. She researches recovery from injury and wanted to understand how patients manage pain, specifically back pain, and they had stories to tell.
Some participants experienced pain associated with congenital defects, while others suffered work- or sports-related injuries. Various levels of surgical intervention had been tried. Some participants had health insurance and some did not.
Fritz believes that there is a threshold where patients transition from self-care to seeking help from a doctor. Honing in on this threshold requires a better understanding of what patients deal with a on a day-to-day basis.
“Back pain is a very common condition, but only a small percentage of sufferers seek help,” said Fritz. “Patients are the key to making this research better.”
While Fritz is an expert at back pain treatments, she is not an expert at engaging with different communities to bring together a diverse cohort of patients to speak of their experiences.
To help with this process, she contacted the Collaboration and Engagement team within the Center for Clinical and Translational Science (CCTS). The team bridges the divide between researchers and the community. They have spent years building trust and establishing deep ties with a number of diverse communities that span ethnic and socio-economic groups.
The participants who take part in the patient engagement studios provide a voice for often overlooked and unheard groups.
Researchers benefit by deepening the pool of participants in clinical trials and related studies thereby ensuring their work translates to people from different walks of life.
Once Fritz realized the value that community feedback could provide, she coordinated with the team to set goals and develop a blueprint to follow during engagement events.
A Gathering of Pain Experts
At the back pain engagement studio, the conversations were lively.
Almost all of the participants tried alternative therapies, such as meditation, yoga, and Pilates, to avoid the unpleasant side effects of pain medications.
While some participants focused on strengthening their core to manage pain, others used a more holistic approach, striving for physical, spiritual, and emotional balance.
Participants lacking insurance turned to social media, including YouTube and Facebook, to find alternative therapies to help relieve their pain.
One participant’s comment encapsulated the mood of the discussion, “I am not looking for a miracle. I just want to age gracefully so I can pick up my grandchildren in my old age.”
Fritz walked away from the table with a wealth of information. “I think this studio will help us identify therapies that are relevant to patients at different stages in their treatment.”
She credits the team for a successful studio event. “The skillset of the moderator and the Community Engagement team was essential to develop an engaging and caring conversation.”
“In order to address health issues, we believe the voices of the community have to be brought into research,” said Tatiana Allen-Webb, a community liaison for the Collaboration and Engagement Team. “Their own perspectives, barriers and concerns bring to us a profound understanding on how to best approach health interventions. We strive to bring a true representation of diversity to the table every single time.”
How the CCTS Collaboration and Engagement Team Can Help
The team stress the need to contact their group at the earliest stages of a study. The team offers the following services:
- a free one hour consultation to help researchers understand different ways to increase diversity and strengthen partnership during proposal development;
- facilitation of researcher¾community collaborations to develop community-engaged research methods, instruments, and educational materials;
- mentorship to researchers, project staff, and community leaders at all phases of the study; and
- facilitation during Patient Engagement Studios for researchers to engage and learn from community experts.
To schedule an appointment with the team, email Tatiana Allen-Webb at tatiana.allen@hsc.utah.edu.
The Community Engagement and Health Care team promotes, implements, and supports community-engaged research as part of the Center for Clinical and Translational Science, which translates promising bench science into practices that improve human health.
Contact: Rebekah Hendon
Email: Rebekah.Hendon@utah.edu