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A Letter to Clinical Trial Participants: Part 1

Many conferences, whether they are focused on clinical research or the broader healthcare industry, have one common thread throughout, and that is the patient. Whether that be through direct stories or resources, companies are sharing their feedback and the patient is at the center of it all. Earlier this month, I attended the T3: Trials, Tech, and Transformation Conference in Philadelphia, PA and here are some of my highlights:

  1. A patient story. Like many conferences, events, roundtables, or forums, getting connected with patients to hear first-hand about their experiences is incorporated to spark change in our industry. Whether the patient talks about the good or bad parts of their experiences, their feedback helps us to rethink or emphasize the things we do as professionals in clinical research. At the T3 conference, we were honored to hear the journey of Stefani Joho, cancer survivor, clinical trial participant, advocate and now a partner of science. She spoke about her initial diagnosis, nearly dying, and miraculously finding a clinical trial that shrank her tumor by 65%. It wasn’t the fact the clinical trial provided her with life and hope that really stood out to me; it was the many hurdles she had to overcome to get in the trial in the first place. Stefani’s doctor told her she would not survive much longer and with the increase of pain and complete loss of appetite, I am sure it was not easy to fight. If it had not been for her sister navigating ClinicalTrials.gov, she may not have had the opportunity to share her story. I wonder how many people who are left with no option have caregivers and supporters like Stefani’s who will go to lengths to make sure they find hope. I recommend hearing Stefani’s story firsthand. Her story impressed upon me the need to make the process faster and easier for those who have life-threatening illnesses; we must be more attentive to their needs spring into action, and we must continue inviting stories such as this into our conversations to help us better shape the future of clinical research.
  2. De-centralized clinical trials will shape the future of care in clinical research. De-centralized clinical trials are when some, if not all, study procedures and data collection take place at locations remote from the investigator. If available, through a patient’s health care system, they can partake in telecommunication and mobile reporting. If you are ever on the fence about the benefits of de-centralized clinical trials, I would think about it from the patient’s perspective. A person who may not have access to reliable transportation or perhaps does not live near a clinical trial site or their physician’s office can constantly be deterred from volunteering because of the barriers they face. What de-centralized clinical trials could lead to are faster, less expensive trials, and greater access to more patients in a real-world environment.
  3. 23&Me is changing the industry. Have you ever taken a DNA test at home to learn about your ancestry or health history? I have not but have friends and family members who have and are shocked by where their bloodline has been traced back to. Not only does 23&Me help track down what your genetic make-up is and your health history, as the only FDA-authorized DTC genetic service, they are also making clinical research available, for all who choose to have their health history used as indicators for potential clinical trials. Within their platform, they are able to engage patients before, during and after a clinical trial based upon data-driven site optimization and patient identification. This makes for more efficient direct patient recruitment where they can return results and increase engagement in clinical trials. Innovative opportunities such as this put the patient at the center by providing them with the resources to get better connected to clinical research, their data, and health information. It allows for connectivity throughout the healthcare ecosystem that provides patients with the best options available to meet their needs.

 

While this blog is titled “A Letter to Clinical Trial Participants”, you will have to wait for part 2, coming next week to hear what else I have to say.

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