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Patient Advocates Play Pivotal Role at ASCO 2020

Patient Advocates Play Pivotal Role at ASCO 2020
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Published on May 27, 2020

With the American Society of Clinical Oncology (ASCO) Annual Meeting right around the virtual corner, you may be wondering what this medical society has to do with patients. The answer? A lot.

Founded in 1964, a time before the word “cancer” was uttered in polite society outside of medical offices and hospitals, ASCO’s mission was to lessen the stigma while improving patient care. It still is.

A Moment in History

ASCO had seven original members, all physicians. Now, more than 45,000 people around the world are members. And, membership is not limited to oncology specialists and other medical experts. Patient advocates now play a large role in helping to break down the technical and scientifically dense information in clinical trials, medical jargon and journal articles. 

With ASCO20 being online only this year, and the virtual meeting being free for patient advocates, now is a great opportunity to more fully understand how the latest research findings can be translated into promising therapies. 

Patient and Advocate

Christine Hodgdon was diagnosed with stage IV de novo breast cancer at age 34, which means the cancer was metastatic. Fortunately, she currently shows “no evidence of disease” and gets scans every six months and monthly infusions to ensure she remains stable. 

The shock of the diagnosis and the grueling treatment lit a fire under Christine, and she switched gears and entered the world of advocacy. Her professional background in biology helps her understand the dense science and break it down into digestible chunks of information for patients and their loved ones. 

“I saw a need for people to help explain the research behind the cancer. Knowledge is power. The more I know, the safer I am,” Christine said. 

She formed the Storm Riders Network1 as a resource for metastatic breast cancer patients and others who are “riding out the storm,” a nod to her late father’s favorite band, The Doors.2 She figured, if she needed a resource, others probably did too. The website is where she breaks down details about precision medicine, new therapies, and the complex world of clinical trials to help others.

Christine’s efforts with the Storm Riders Network blossomed into her work on Capitol Hill, lobbying to get more funding for research and also attending cancer conferences to get one-on-one time with researchers.

Christine also co-founded Guiding Researchers & Advocates to Scientific Partnerships (GRASP) alongside her fellow metastatic breast cancer advocate, Julia Maues. They piloted the program at a recent breast cancer conference and worked to bring patient advocates and scientists together for a walkthrough of scientific posters. 

Their successful first effort led these women to grow GRASP for upcoming events, including the virtual ASCO 2020 meeting. Though in-person meetings bring a certain energy to GRASP, the upside of conducting GRASP sessions virtually is that people who normally cannot attend ASCO in person will have access to this information online.

Christine says that the efforts of patient advocates “break down the invisible barriers” between medical teams and the patients. The democratization of social media also plays a role in enabling patients to be part of the larger conversation. 

ASCO20 Virtual Scientific Program, May 29 – May 31, 2020

This year’s conference will have more than 250 oral abstract presentations and 2,500 poster presentations in 24 disease-based and specialty tracks. View more details about the scientific program and follow the #ASCO20 hashtag on social media for timely updates and announcements.

~Lauren Evoy Davis


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References

  1. The Storm Riders
  2. The Doors. Riders on the Storm.
  3. Guiding Researchers & Advocates to Scientific Partnerships (GRASP)

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