Assumptions, poor record keeping, or a lack of viable information can stand in the way of trial progress and push patients away from potentially lifesaving clinical trials.
Speaking to a packed room at the 11th annual Clinical Trials in Oncology conference in Munich, vice president of patient engagement for Medidata Dassault Systems, Alicia Staley detailed her personal cancer treatment journey which includes 15 weeks in radiation therapy, a bone marrow biopsy and weeks in hospitals and chemotherapy sessions, but how some trials failed to capture her patient information correctly.
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Staley is a survivor of both Hodgkin Lymphoma and breast cancer and now heads up patient engagement for Medidata. She urged attendees to ensure that patient records are always stored and accessible appropriately, telling delegates about one medical device trial that saw a small amount of radioactive material, through a method known as seed radiation, causing her severe pain and at risk of quitting the trial altogether.
Staley said: “The first time I was presented with a clinical trial I was 19. We came back from the hospital with a full binder of documents all about the trial, but in the end, my parents decided that they did not feel comfortable letting me take part in the trial purely from a lack of information.
“The one trial I did participate in was a medical device trial. The device was for a new method of radiation delivery and the trial appealed to me as an engineer – I could easily understand the inclusion/exclusion criteria.
“Ultimately, we learned after the trial started that incomplete information in my medical record put me at a higher risk for trial failure due to previous radiation amounts. This led to a tough trial experience.”
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By GlobalDataStaley said it was only after encouragment from her mother that she was willing to continue the trial. Now, she is urging healthcare firms to ensure that their clinical trials not only keep rigorous, searchable, and accessible records for all patients to avoid the assumptions that would cause pain or vulnerable patients to reject the trial together based off a lack of readable or concise information.
Responding to an audience question on what a small, cash-strapped healthcare firm can do so as to ensure it is communicating with the right patients, Staley urged the use of social media and connecting patients together to broaden the base of patient knowledge. She also emphasised the importance of reaching out to patients who have access to communities or groups home to other cancer survivors and clinical trials alumni.
