Patient Education Keeps Up With an Evolving Field

Lexi Starosta - February 21, 2023

The Patient Education program relaunched three original Gene Therapy 101 units. Learn more about the process of updating the materials and why it is important to keep resources current.

It’s been five years since ASGCT launched its Patient Education program with the goal to provide accurate, reliable, and scientific information on gene and cell therapy to the public. The first-ever release of ASGCT’s Gene Therapy 101 resources included Gene Therapy Basics, Gene Therapy Approaches, and the Clinical Trials Process.

These videos have garnered more than 370,000 views since their original launch in 2018 and set the tone for what is now an entire award-winning website of resources. The program was honored in 2021 with the “Power of A” award from the American Society of Association Executives for celebrating and promoting the invaluable contributions that associations make to America and the world. 

To stay consistent with a changing landscape of research, approvals, and patient-centered discussions, we went back to update all three original units, including video scripts, animations, supporting web content, and infographics.   

The ASGCT Patient Outreach Committee led the way with fresh concepts, content, and language for the revamps. We gathered feedback and ideas on each of the previous support materials from our expert member-volunteer committee members and patient advocacy organization representatives. We considered what type of questions they had after watching, what could be explained better, and what they wanted to learn more about after each unit.  

This review from advocate and expert perspectives ensures our educational units present the most current information about how gene therapy works, its potential to treat disease, and its potential challenges  for patients. We also focused on making the communication organized, clear, and concise, while providing enough terminology to empower caregivers, patients, and advocates with tools to discuss gene and cell therapy with individuals involved in their personal or care network.

Here’s just a glimpse into how this feedback allowed us to pinpoint key themes that needed updating:  

  • There was a need expressed for the audience to understand some of the basics of genetics prior to jumping into gene therapy, so the Patient Education team added further descriptions of chromosomes, genes, and DNA.  

  • We altered a handful of commonly used terms to reflect current best practices mentioned by reviewers. For example, they requested the words “participant” and “patient” to be better differentiated. Participant- and person-first language provides more inclusive and accurate language when referencing human participants in clinical trials.  

  • We learned that gene variation is quickly becoming the preferred language over gene mutation when describing changes in our genetic makeup that can cause disease. We shifted this language to be consistent with patient-facing providers and to be more inclusive. 

  • Due to the huge change in the scope of the field, the “Gene Therapy Approaches” unit required the greatest overhaul. We carefully considered how to better differentiate between the various strategies being researched or already approved. This meant expanding the explanations and support material to better encompass many of the ways gene and cell, or DNA and RNA, therapies are now compared to just a few years ago.  

The field is growing; approvals for new technologies are happening each day; and science is evolving. It’s not an easy task to keep resources up-to-date, but it’s a challenge the Patient Outreach team and committee are ready and happy to accept and have already been working to address topic by topic.  

The Patient Outreach Committee will continue to work with various stakeholders of industry, academia, clinics, and patient advocacy organizations to ensure a well-rounded approach to explaining unfamiliar terms and concepts for communities at any stage in their gene and cell therapy journey.  

If you have questions about any of ASGCT’s Patient Education program goals or would like to find out about ways to be involved, contact ASGCT's patient outreach manager, Lexi Starosta, at education@asgct.org

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