Received GDUSA Health+Wellness Design Award in 2023
Health Literacy At The Movies
Diversity in Clinical Trials
For Clinical Research Professionals
This video provides an overview of the importance of diversity in clinical trials. For clinical research professionals only.
Made possible by a sponsorship from WCG.
To read about the development process for this video, click here.
Working Towards a More Inclusive Environment: Transgender & Non-Binary Participants in Clinical Research
Trans and non-binary people face significant barriers to participation in clinical trials. To transform lives and collect the best evidence, we need to fully understand and work together to solve these challenges, by creating more diverse and inclusive clinical trials. This talk features two speakers from these communities who will provide insights, both for attendees that are new to this topic and for those who already have started learning. This webinar was organized and hosted by CISCRP for Clario.
Featured Speakers
Jae Bailey
(They/Them/Their(s))
Liam Paschall
(He/Him/His)
Medical Hero Spotlight: Scott Germain, PTSD Patient Advocate
Retiring from Military Service
Today, Scott Germain works at the United States Army Natick Soldier Systems Center as a government employee, a change of pace from his previous career in the Army as a sergeant major. Scott served for 25 years in the U.S. Military, including time spent as a member of a Special Missions Unit and as a Green Beret. Throughout the 1990s and early 2000s, Scott was deployed to many areas of conflict, including Bosnia, Haiti, Rwanda, Afghanistan, and Iraq.
In 2012, Scott officially retired from the Army and was evaluated by a Special Missions Unit psychologist before leaving. “I think the Army’s standards of disability are different,” Scott says.
Scott during his military service
“I was evaluated as only having anxiety from leaving. The psychologist saw my team very frequently while I was deployed, so underlying issues weren’t as apparent to her in the environment we were all living in.”
Scott’s wife Jeannine has worked for many years in her own career to support veterans and military families. She is currently a project manager at Project New Hope, an organization dedicated to providing services and programs to support veterans and their families. After Scott left the Army, Jeannine saw many common signs of Post Traumatic Stress Disorder (PTSD) in her husband, despite a lack of diagnosis from his doctors.
Scott was eventually tested, and his disability rating given by the military skyrocketed to 100%. “Scott was shocked when doctors concluded his PTSD was moderate to severe,” Jeannine recalls. “Since he retired from the Army, I sensed he was struggling, but he didn’t recognize the signs in himself. The testing was very helpful for us.”
Beyond PTSD, Scott suffered multiple physical injuries in his career for which he was prescribed pain medications. After leaving the military, Scott joined a three-week program at the Mayo Clinic to be weaned off these pain prescriptions alongside other people who struggled with chronic pain and addiction. “My experience with pain medication was different from many others in that group,” Scott says. For many people living with chronic pain from diseases or injuries, simple tasks like getting out of bed can be a challenge. Scott had been deployed and working while coping with the pain from his injuries, so his biggest challenge was now learning to not depend on the drugs in his daily life and be comfortable with a certain threshold of pain.
Finding Treatment
After the Mayo Clinic, Scott and Jeannine began looking for resources to help treat his PTSD. They began at Home Base in Boston, a nonprofit that provides mental health counseling, physical therapy, and other resources for veterans. Scott met with a team of doctors there who discovered that during his career, Scott had experienced a Traumatic Brain Injury (TBI) with lingering symptoms that continued to impact his health. “There are many ways a TBI can manifest, but for me, I struggle with memory loss, balance issues, severe migraines, mood swings, and sleeplessness. My body had adjusted to some of these problems over time, so I wasn’t even aware I was compensating,” Scott says.
For the remainder of his time at Home Base, Scott attended the program with a large group of veterans in the area. The treatment involved a lot of group therapy with veterans who had wide ranging experiences. Scott found himself struggling to connect with others in the program who served for several years, not several decades like he had.
“To help reassure many of us living with PTSD, our doctors would try to reinforce the message that the world is a safe place, and we didn’t need to be hypervigilant, but that just didn’t resonate with me,” Scott reflects. “Even back home in the US, there are daily mass shootings in public spaces we go to everyday. It felt hypocritical to say everything is okay to a group of people who know from lived experience that it is not.”
A couple of years after finishing the Home Base program, Jeannine stumbled across a recommendation for The Marcus Institute for Brain Health, a program through the University of Colorado that specializes in treatment for traumatic brain injuries. Scott applied and was accepted for the three-week inpatient program. The process involved a lot of physical therapy to help treat injuries as well as build up Scott’s balance and motor skills, which were impaired from his TBI. The group also did activities like yoga, art therapy, and memory exercises. The treatment was very successful for Scott, who enjoyed the program and the specialized care he received. “I appreciated that the doctors didn’t treat us all the same. I was in a very small class of 3 people, but our cases and experiences were all handled differently, and plans were made specific to each patient,” Scott says.
Advocacy Work & Advice
Throughout Scott’s treatment for his PTSD and TBI, there have been many roadblocks and barriers that have made receiving treatment harder. Scott has had negative experiences with doctors who have spoken down to him and minimized his experiences. There have also been many instances where getting appointments has been a struggle. “The VA and many other treatment centers are only open during office hours. If you need help from them or want to go to a group session, it has to be during the workday. For me that’s unrealistic since I still work a full-time job,” Scott says. Another current issue facing the military community is the overall shortage of available doctors and therapists. “Many military spouses and family members need healthcare services and there are no available appointments,” Jeannine says.
Scott’s years of experience navigating the healthcare system have made him a strong advocate among the veteran community for those living with PTSD. “When I was serving, I didn’t know anything about PTSD or TBIs,” Scott recalls. “Having that knowledge ahead of time is incredibly helpful and could save someone a lot of time and struggle.”
Scott and Jeannine’s greatest piece of advice for someone living with PTSD is to become educated and to encourage their family and friends to learn more about the disease as well. Jeannine recalls spending a lot of time early on when Scott first joined the Army educating herself about PTSD so she could provide support and so their family could adapt their lives as needed. Having the understanding and support from spouses of military members and other loved ones is critical.
Scott would also advise anyone struggling with PTSD or with a mental health condition to consult with their doctors to find small changes that can benefit them. For Scott, drinking in moderation and driving during off-hours of traffic are small alterations that made a big difference in keeping him safe.
“Ultimately, when it comes to medication and treatment options, everyone should be their own advocate,” Scott says. “Make sure you ask any questions you have to your doctors before starting a new treatment and that you feel comfortable with the care you are receiving.”
Additional Resources:
https://www.projectnewhopema.org/
https://medschool.cuanschutz.edu/mibh
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Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
