The Center for Information and Study on Clinical Research Participation (CISCRP) hosted its AWARE for All – Philadelphia virtual community event on October 1. 300 individuals attended to learn more about the clinical research process and the role it plays in developing new treatments and vaccines. This free event brought clinical research education directly to patients and the public and featured Philadelphia-based study participants, research professionals, advocates, and industry stakeholders.
The AWARE for All online event featured a keynote and overview presentation followed by a panel discussion; virtual health exercises—a Tai Chi guided demonstration and Mindful Meditation; and a virtual health fair with exhibits from local Philadelphia-area health and wellness organizations.
Keynote: Minority Participation
Keynote speaker, Dr. Edith Mitchell, Clinical Professor of Medicine and Medical Oncology; Director of the Center to Eliminate Cancer Disparities; and Associate Director of Diversity Affairs at Sidney Kimmel Cancer Center in Philadelphia described how as a young girl growing up in rural eastern Tennessee she saw her family develop a schedule to personally care for her ill great grandfather because they believed he was more likely to survive under their care than at the local hospital as a Black man. That experience triggered her desire to become a physician and battle medical inequalities.
“Thanks to clinical research volunteers, we are all living longer, healthier lives, but we still need to increase the diversity of those who participate in clinical research,” said Dr. Jonathan Jackson, Ph.D., Director of the Community Access, Recruitment, and Engagement (CARE) Research Center. “The success of clinical trials also depends on including a diverse and inclusive group of people representative of those who may receive the new therapy if it is approved for use.”
Jackson described the need for increased minority participation in COVID-19 clinical trials in part because the virus has disproportionally impacted minority communities. He also explained that some COVID-19 trials are moving faster than research on other diseases because research done on similar viruses is informing the COVID-19 research.
The COVID-19 pandemic has impacted clinical trials in a variety of ways, but they are generally continuing under new safety protocols to minimize contact and maintain patient and physician safety including in-home, virtual visits and telemedicine appointments.
The panel discussion was led by Ken Getz, founder and board chair of CISCRP. Study participants and researchers focused on clinical research experiences and misconceptions, health advocacy and equity, and how the pandemic has impacted clinical trials.
During the panel discussion, study volunteers Mary Reppart and Ashley Kulp shared challenges when participating in a clinical trial, but they stated that it has always been worthwhile for them participate. They encouraged prospective study volunteers to be aware of potentially long sessions or treatments and they suggested ways to manage stress and transportation to the clinical trial site. Kulp said receiving her medication mail order and going to a local lab for blood tests has been a huge relief during the pandemic.
Jamie Houde, Senior Manager of Clinical Strategy and Innovation at EMD Serono, a panel member, described how her organization has redesigned its studies to better reflect patient diversity. She said research is a partnership between researchers and patients, and patients should always share ideas or ask questions to better understand the study in which they are participating.
Panel member Andy Lee, SVP Head of Global Clinical Trial Operations at Merck, said he appreciates AWARE for All’s focus on patient education, evaluating the decision to participate, and fully understanding what it means to participate because that underscores the philosophy of clinical research: patient safety is the first tenet of medical research.
“Our medical advances can only happen through the efforts of many people, especially the patients who volunteer for clinical trials. They are our partners in research,” said Lee.
Clinical Trial Education Movements
CISCRP is a non-profit organization dedicated to educating the general population and patient communities about clinical participation. They work with local advocates around the country to plan and host educational events about the clinical research process. Anyone interested in learning more about participating in clinical trials can obtain information from CISCRP at 1-877-MED-HERO or http://www.ciscrp.org.
CISCRP offers a free service designed to help patients and caregivers find clinical trials within their medical condition and location at http://www.searchclinicaltrials.org. CISCRP also recommends that individuals consult with a trusted health professional for more information and review key websites devoted to clinical trials:
- ClinicalTrials.gov is a site maintained by the National Institutes of Health (NIH) that includes trial and enrollment information.
- ClinicalTrials.gov/COVID-19 is also a site maintained by the NIH listing COVID-19 clinical trials.
- Cancer.gov is a site managed by the National Cancer Institute.
- SearchClinicalTrials.org and ResearchMatch.org to learn about clinical trials and connect with study teams.
CISCRP recently launched informational videos about the different phases of clinical research participation and highlights why it takes so long to develop new therapies. The first video of the series can be viewed here: https://www.youtube.com/watch?v=iid3BMqopMM.
Supporters of the AWARE for All – Philadelphia event include Albert Einstein Healthcare Network, Drexel University College of Medicine, Greenphire, Lazarex Cancer Foundation, National Alliance on Mental Health – Montgomery County chapter, Allergy & Asthma Network, Fox Chase Cancer Center, TREND Community and the AWARE Industry Consortium.
The Center for Information and Study on Clinical Research Participation (CISCRP) is a 501(c)(3) non-profit organization dedicated to engaging the public and patients as partners in the clinical research process. Visit http://www.CISCRP.org for more information or to participate in CISCRP’s educational initiatives. For additional questions about AWARE for All, contact [email protected] or call 877-633-4376.