Earlier this month, our team was thrilled to attend the sixth annual Patients as Partners Conference in Philadelphia. Over the two jam-packed days of patient panels, interactive sessions, break-out discussions, and pharma case studies, we had the opportunity to hear a wide variety of perspectives on how the clinical research industry is striving to better engage the patient voice. From developing better protocols to bringing procedures directly to patients, and even sharing trial results post-completion, we learned that the patient voice needs to be incorporated in every phase of clinical research.
It was impossible to pick just one favorite session after two full days of speakers, so we’ve recapped our top two highlights from the conference below:
Judy Perkins’s Immunotherapy Trial: A Cancer Veteran’s Remarkable Story
Judy Perkins, a metastatic breast cancer veteran, kicked off day one of Patients as Partners by sharing her story of diagnosis and her experiences in two separate clinical trials. After the first trial failed, Perkins went on to participate in a second trial at the National Institutes of Health. She became the first breast cancer patient to be treated with immunotherapy. She began the trial in May 2016, and by December, Judy was declared clear of all cancer. This session reinforced for all in the room that every trial participant is an individual with a voice, and hearing from Judy Perkins was an opportunity to see just how powerful a patient advocate can be for clinical research.
Appraising Initiatives to Raise Public and Patient Awareness and Education
Ken Getz, founder and board chair of the Center for Information and Study on Clinical Research Participation (CISCRP), shared some of the global initiatives that have been implemented over the last several years to raise public awareness and public literacy about clinical research. One particularly moving CISCRP campaign, the MT Pharmacy, brought an empty pop-up pharmacy to Newark, New Jersey, to show what stores might look like without the medicines developed through clinical trials. Those who wandered in were able to fill the shelves with the drugs they wished were available for themselves or their loved ones. This campaign effectively educated the community on the importance of clinical research when it comes to filling pharmacy shelves with FDA-approved drugs. Read more about the MT Pharmacy and watch the video documenting the pop-up experience.
If you’d like to hear more about our time at Patients as Partners 2019, or if you’re interested in learning how we’re helping our clients create more patient-centric clinical trials, contact us!