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How Patient Research Changed the Way We Present Clinical Trial Conferences


  • November 12, 2015

  • GregSimon-1

    Greg Simon, CEO, Poliwogg challenging the first Dpharm audience.

    Valerie Bowling, Executive Director of The Conference Forum discusses how her research with patients changed the way she looks at and presents all clinical trials conferences.
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    Five years ago, Greg Simon, who was the Head of Policy at Pfizer at the time and is now CEO of Poliwogg, asked our DPharm audience when was the last time you thanked your patients for being in a clinical trial. No one raised their hand. My immediate thought was that there was an urgent need for a conference on customer service for patients in clinical trials.

    JeriC

    Graphic illustration of Jeri Burtchell, Founder of PatientsinResearch.org and our first patient speaker!

    I began to research the topic within the pharmaceutical industry and received enlightening feedback: we can’t look at patients as customers, we can’t directly communicate with patients, there are privacy laws, we don’t directly work with patients, and more. I learned that often people who have direct contact with patients are not necessarily trained to work with patients to empathize with their condition and life style.

     

    What To Do?
    I knew that something drastically had to change and a paradigm shift in how the industry views and works with patients was paramount. I also realized that as a researcher, I needed to start with myself. I needed to make that paradigm shift in who and how I do research. With that, five years ago, for the first time I began to research directly with patients. Getting their feedback changed the way I produce conferences and, more importantly, how I can potentially affect positive change for patients through my conferences.

     

    What Patient Research Taught Me
    Patients taught me empathy with their disease, but also with their lifestyle and their struggles in finding and experiencing a clinical trial. In particular, I learned the vital need to cover sessions that:

    1. Understand and incorporate the patient’s voice in designing clinical trials and developing a clinical endpoint

    2. Vastly improve the patient’s entire experience in a clinical trial

    Patient Advocate Speakers

     

    Dpharm US, Dpharm Europe, Patients as Partners, and Immuno-Oncology 360 would not be possible without the many supportive patients and industry executives who helped my team and I gain a better understanding of the science of patient-centricity in clinical research. Thank you!