Survivors Union of the Bluegrass marks year of impact on UK research

A community advisory board is marking more than a year of impacting research at the University of Kentucky.

The Survivors Union of the Bluegrass (SUB) is comprised of those who identify as people who use drugs and/or people in non-abstinence-based recovery. They represent various regions across the Commonwealth.

SUB was formed by a group of researchers in the Substance Use Priority Research Area (SUPRA), but the group can consult with any researcher at UK. It is supported by SUPRA along with the Center for Clinical and Translational Science (CCTS) and Voices of Hope, a local non-profit recovery agency based in Lexington.

“It’s been a great year. We’ve built a tight-knit core group of people who understand where each person is coming from even though our recoveries all look a little bit different,” said Jeremy Byard, SUB chair. “And with this opportunity, we’ve created a safe space for members to influence research in a meaningful way. It’s been a wonderful year to all learn from each other.”

Nineteen research teams have visited the SUB, shared their work and gathered feedback from the group. More than 70% of the teams specifically asked for the group’s input on project design and research questions.

“I think that trend so far shows that researchers see the value of having people with lived experience provide meaningful input in the initial phases of research when there is an opportunity to really shape the trajectory of some research projects,” said Amanda Fallin-Bennett, Ph.D., associate professor in the UK College of Nursing and co-founder of Voices of Hope. “There’s also been widespread buy-in from UK’s substance use researcher community. We have had several researchers who’ve repeatedly visited the group.”

SUB members have shared how honored they are to be part of the process, contributing to the work and having engaging conversations with the scientists involved.

“I believe that for most of the researchers, meeting with us has helped refine their work. That gives me a sense of being valued. ‘Maybe if we ask these questions differently, then more people will respond.’ All those things are so valuable for me to watch happen,” said a SUB member whose identity is kept private.

Members have given feedback on recruitment, intervention design, results interpretation and other study elements on a variety of topics from the use of fentanyl test strips, barriers to medications for opioid use disorder and reproductive health services. Researchers said the additional perspective was invaluable.

“Consulting with the SUB was a really wonderful experience. They were welcoming and informative, and provided our team with important, targeted feedback on our proposed study outcomes,” said Carrie Oser, Ph.D., associate director of SUPRA and Endowed DiSilvestro Professor of Sociology in the College of Arts and Sciences.

“The most powerful aspect of the consult was engaging with the wide breadth of lived experience represented on the board, and truthfully, from the members’ unique perspectives they nominated some important candidate outcomes for the study that our team had not fully considered previously, which was an essential contribution to this very important large center proposal,” said Hilary Surratt, Ph.D., an associate professor in the Department of Behavioral Science in the College of Medicine.

The group has also consistently worked with trainees on grants focused on teaching scientists dedicated to studying substance use and substance use disorders.

“The SUB has been consulted by researchers across the spectrum, from seasoned scientists to those new in their careers. This opportunity to meaningfully engage can help break down stigmas about people who use drugs and offer a different view on the importance of incorporating people with lived experience in science,” said Fallin-Bennett.

Substance use research is one of UK’s priority areas because of the significant need in the Commonwealth. Kentucky has the second-highest drug overdose death rate in the U.S., only behind West Virginia, according to the latest data from the Centers for Disease Control and Prevention.

SUPRA’s mission is to prevent and reduce the burdens of substance use disorders through conducting and translating transdisciplinary and innovative research to inform clinical services, training and public health practice, and transform policy.

“When you can have a better understanding of the nuances around drug use — either the problem severity or the people and their challenges versus just their drug use behaviors — I think it’s a big win for the research community and the members of SUB,” said Byard.

SUB members initially planned to meet virtually every other month but had enough requests from researchers to meet once a month. The group’s work will continue and people who use drugs who want to join the effort can sign up online.

“Our goal is to continue to empower the voices of the people who use drugs or the people who are on non-traditional recovery pathways and to continue to educate the community,” said Byard. “We hope to grow our sphere of influence in ways that will ultimately better the Commonwealth.”

Researchers can sign up to consult with the board here. Questions can be emailed to Amanda Fallin-Bennett (amanda.fallin@uky.edu).

The UK Research Priorities Initiative, funded by the Office of the Vice President for Research, encompasses eight priority areas: cancer, cardiovascular diseases, diabetes & obesity, equity, energy, materials science, neuroscience, and substance use disorder. These areas were chosen based on local relevance, existing funding strength, sustainability and disciplinary scholarly diversity. Learn more at www.research.uky.edu/research-priorities-initiative.