The Value of Health Data – Clinical Trials

Last year, when we first began helping cancer patients collect their medical records, I had a conversation with the wife of a cancer patient to gage her interest in having her husband’s cancer records. He was just getting ready to begin chemotherapy for liver cancer, and she was coordinating his care. I asked if she was interested in having us help gather his medical records.

Her initial reaction was lukewarm. He was getting care “at the good local hospital” where he had been diagnosed, and where they had both received care in the past, she said. This hospital’s electronic medical records system had a portal where she could view relevant parts of her husband’s medical records, she told me; and why would they need to have all of his information anyway?

But, when the chemotherapy regimen was not as effective as they had hoped, she realized how valuable it would be to have her husband’s records at her fingertips, where she could quickly and easily share it to explore more options – to potentially find a treatment that was more effective or at least less toxic, or to determine eligibility for a clinical trial testing a novel treatment.  

Our next several blog posts are going to explore the value to patients (and their caregivers) of having your health information available when you need it. And one potential value to a cancer patient of having your medical information is to help identify clinical trials for which you may be eligible.

Recently in Medium, my friend Martin Naley published a great three-part post on cancer clinical trials. Martin is working with the Biden Cancer Initiative, leading their effort to double clinical trial enrollment nationally. As he poignantly explains in the first post, cancer clinical trials are “in crisis”:

  • While 25% of patients could qualify for clinical trials, less than 5% of adult cancer patients actually participate.  There is room to enroll over 250,000 additional patients into trials…. 80% of cancer clinical trials do not meet their enrollment timelines, and this slows the broad introduction of new treatments to all cancer patients.  

Martin lays out, in detail, some of the reasons why the rate of enrollment in cancer clinical trials is so abysmal. Among the problems are that publicly available information about clinical trials is hard to find and sift through, and even once you find a clinical trial that appears to be a match, the criteria for inclusion or exclusion are inaccurate or incomplete. Further, trials testing the most innovative treatments often are not available outside of elite academic medical centers. To change this dynamic, the Biden Cancer Initiative is seeking collaborators (clinicaltrials@bidencancer.org) to “create, validate, and deploy new strategies for patient enrollment in cancer clinical trials.”

Count us in.

Assuring that cancer patients have their complete, organized cancer medical histories at their fingertips will not fix all of the problems with cancer clinical trials. But having your data at the ready is an essential first step to finding a trial that could extend or even save your life.

-Deven McGraw