Research Isn’t Just Science

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Editor's Note: This post is guest authored by Jennifer Byrne, founder of the nonprofit organization Greater Gift and former CEO of PMG Research, Inc. Jennifer is highly committed to building better bridges between patients and their health care providers to the life science community. Her guiding mission is to mainstream the transformation of clinical research as a care option for all patients; improving the delivery model of research and creating space to match the right trial to the right patient at the right time. 

Have you heard of the Enhanced Clinical Trials Design Act?  If you haven’t, you may soon. The act took effect in August of 2017 and was sponsored by four bipartisan members of the Senate Health Committee. This act encourages conversations between the US Food and Drug Administration (FDA), National Institutes of Health (NIH), key industry stakeholders and Americans who participate in clinical trials. It aims to modernize the clinical trial process to provide more treatments and therapies to improve lives.

But what good is a law aimed at making clinical trials easier if people don’t know about them?  Or have negative attitudes about them?  What can we do to improve this space?

Actually, there is a lot that we can do. We can thank individuals who participate in clinical research and make new medicines possible. We can tell their stories to help spread the message of what it means to participate and what clinical trials entail. We can encourage our social circles to consider participating and we can speak to our health care providers about potential opportunities. 

My nonprofit company, Greater Gift, is dedicated to thanking and celebrating people who contribute to the advancement of medical research. On November 16th, Greater Gift, along with other local organizations including the Winston-Salem Office of the Mayor, Wake Forest Baptist Medical Center, the Innovation Quarter and leaders within the Arts community, joined Lilly for the final Hero’s Journey™ Art unveiling. This event shone a light on clinical research participants in ways that surprised, inspired and caused people to change their perceptions of clinical research.

You may be wondering: How could an art exhibit cause people to change their perceptions of clinical research?  Rallying a community around a celebration of clinical trial art and stories is powerful. Dr. Julie Freischlag, CEO of Wake Forest Baptist Medical Center and Interim Dean of the Wake Forest Medical School said it best, “Research results in better care for patients, more choices, more providers and more education.”  The words of our speakers, attendees and clinical trial participants at the event were moving and inspirational. But did they change people’s perceptions of attitudes about clinical research?

The answer is a resounding YES!  We conducted surveys about perceptions before and after the event, asking participants about their knowledge of clinical trials and willingness to participate. We honestly didn’t know what to expect, but were thrilled with the results. (See the full survey results.) Before the event, 31% of attendees reported they knew nothing, very little or something about clinical trials. After the event, this number was reduced by almost half to 17%. 

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More importantly, when asked about their willingness to participate in clinical research, 25% of attendees said they were definitely or probably not willing. Following the event, this figure was cut by more than half to 12%. One event, did indeed, make a difference.

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So what now?  What’s next?  The city of Winston-Salem and our newfound Ambassadors of Clinical Research will continue to spread the message of the Hero’s Journey™ Art Project and will plan additional activities around the sculpture. If you are in town, please visit the artwork, located at the Benton Convention Center. As Winston-Salem continues to promote clinical research in our community, I urge you all to do the same. Improvements in raising clinical trial awareness are needed on all levels and we all have a part we can play. Opportunities are available, including PopUp Star, a newly launched clinical trial awareness contest. Please visit www.popupstarcommunity.com for more information, join a team, or attend a local event.

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