Clinical Trials Awareness Week 2021 Educates PIs, Research Participants, and Paints the System Red

UH Research & Education Update | June 2021

By Gelise Thomas, Research Community Outreach Coordinator

Awareness is the state of being conscious of something. Over the past year, it was difficult not to hear about clinical trials and even rarer to not become curious about how clinical trials would potentially be the gateway to embracing a newer normal.

University Hospitals Clinical Research Center (CRC) celebrated its second annual Clinical Trials Awareness Week May 17-21, 2021. The goal of celebrating Clinical Trials Awareness Week was to highlight a specific type of clinical research studies, clinical trials. Clinical trials help to determine whether new drugs, devices, or treatments are safe and effective. The CRC Office of Research Compliance, Education & Outreach distributed 2,000 red buttons that read, “Ask Me About Clinical Research,” and badge cards with facts and CRC contact information. The swag was given to physicians, providers, and caregivers throughout the health system to build up anticipation for the celebration and promote a year-long culture of research.

Falling the same week as International Trials Day, the CRC kicked off the week with a course entitled How to Develop a Community Outreach Strategy through Research Results Dissemination. In addition, two panels were part of an Ask Me about Clinical Research series. One panel focused on research participants and caregivers, while the other panel featured UH principal investigators (PIs). The week ended with a discussion on transparency in medicine and research by the Office of Development & Learning’s Beyond the Book program highlighting the book, The Immortal Life of Henrietta Lacks.

How to Develop a Community Outreach Strategy through Research Results Dissemination

Community outreach is an opportunity area for most clinical research programs. Defining who the community is, learning what they need, and delivering on that need is a recipe only perfected by genuine curiosity, adaptive strategy, and action. Gelise Thomas, CRC Research Community Outreach Coordinator, shared the nine elements of building a community outreach strategy through research results dissemination in this interactive workshop.

Ask Me about Clinical Research: Participant and Caregiver Edition

On Tuesday, May 18, four clinical trial participant panelists carried a candid conversation about what it is like to participate in a research study or clinical trial and how they balance being a caregiver to someone going through a health challenge which is also a clinical research participant. Panelist’s testimonials included.

“The clinical trial process really opened my eyes to caring and taking better care of myself outside of what my personal doctors could do for me.” - Dyuanna Calhoun - former CRC intern, caregiver, and clinical trial participant.

“It was a really awesome experience...oh yeah, and I’m sitting here, by the way, and that was the outcome.” - Pete McVoy - a member of the inaugural Clinical Research Community Advisory Board (CAB) and father to UH PI, Molly McVoy, MD.

“I’m able to take Tylenol, Nyquil, and Advil and any other over-the-counter [medicine], like SALONPAS, because somebody else did a clinical trial. There might not be a cure in my time, but it will be on time for somebody else.” - Rochelle Long, clinical trial participant, and caregiver for a UH research participant, her mother.

Ask Me about Clinical Research: Principal Investigator Edition

Grace McComsey, MD, FIDSA, Vice President of Research and Associate Chief Scientific Officer, UHHS, and infectious disease specialist moderated a panel of UH PIs whose practices, passion, and purpose align to answer the call to address challenges related to social determinants of health and diversity, equity, and inclusion in clinical research.Carla Harwell, MD, Medical Director at Otis Moss Jr. Health Center, is stationed in the Fairfax community, a predominantly Black community, understands how important it is for her patients not to be left behind in research studies and clinical trials. Dr. Harwell jokingly said, “Clinical research found me; I didn’t find clinical research,” emphasizing her gratitude for people like Dr. McComsey extending regular invitations to refer patients for studies and serve as Co-PI.

Some PIs always knew they wanted a career that balanced clinical practice and research. Dr. Princess Ogbogu trained in allergy immunology at the National Institutes of Health (NIH). She was in a lab studying rare disorders and exclaimed that the process was really bedside to bench. Dr. Ogbogu explained that she would see a patient, take a blood sample, take it to the lab, and find that the results could change how they treat the patient in real-time. Dr. Deborah Bruno shared a similar experience. Her experience with hematology and medical oncology showed the level of extensive care research participants received in a clinical trial, and she thought, “… this is pretty cool and important.”

A physician-scientist clinical practice and research career balancing act is never easy. Dr. Mahboob Rahman studies hypertensive disorders and said, “One of the things that drives most of us is to do something beyond the individual patient.” This was seen in real-time with the advancements that PIs led through COVID-19 studies. Dr. McComsey shared that the silver lining of the pandemic is that we learned to be more efficient. She added, “A lot of people were exposed to research for the first time because of COVID because they had no other options.”

As we look for ways to continue capitalizing on this momentum, Dr. McComsey asked the panelists what we could do to improve diversity, equity, and inclusion in research. The panelists collectively agreed physicians can:

1. Ask their patients if they are interested in participating in clinical research;
2. Ensure study teams reflect the diversity of the community being served;
3. Share study results with the community; and
4. Support or get involved in research at any stage in their clinical career.

At the end of the discussion, because we can dream, an attendee asked, “If you had unlimited resources, how would you improve recruitment in clinical research or clinical trials?” Dr. McComsey laughed because that is usually not the reality, and Dr. Rahman responded, “(…) a CRC at all sites.” Every great achievement started with someone brave enough to envision it, voice it, and take action. Our community is worth the effort.

Transparency in Medicine and Research: The Immortal Life of Henrietta Lacks

The UH Office of Development & Learning started a Beyond the Book program and featured a #1 New York Times bestseller, The Immortal Life of Henrietta Lacks. Lacks was an African-American woman whose cells were involuntarily taken in 1951 and are still used today for advancements in medical science. Known as HeLa cells and, for decades, not associated with the correct name, Lacks’ cells helped standardize cell culture medium, develop the Polio and HPV vaccines, and, more recently, were used to create COVID-19 vaccines. Read more about research advances enabled by HeLa Cells at the National Institutes of Health Office of Science Policy.

As we champion a socially just and equitable climate with an emphasis on inclusion in recruitment and retention of diverse research participants, maintaining empathy in alignment with The Belmont Report’s principles of autonomy, beneficence, and justice will help guide our research community toward continued progress.

For more information about how to get involved in research or are interested in engaging the CRC for support in building a community outreach strategy, visit UH CRC or email the Research Compliance Office.