Patients as Partners Hits on What Matters Most: Patient Centricity
In my role at Antidote, I talk to advocacy groups and patient organizations every day, so I have a good sense of patient involvement in the drug development process. But, while I speak to organizations about how they’d like to help accelerate research and provide patients with access to clinical trials, I don’t often hear from patients themselves about how they view their role in the larger research ecosystem, how they’d like to be involved with industry, and what they can bring to the table in terms of improving trial design and execution.
That’s why I was excited to head to Philadelphia for The Conference Forum’s annual Patients as Partners conference last week. My goal in attending this conference was to gain more concrete clinical research insights from a patient’s perspective, and I was blown away by the collaborative spirit of the patients, advocates, pharma companies, and other organizations I met during the two-day session. The amount of knowledge and experience in the room made for interesting discussions, as the conversation included both those with real-life experience as patients and those whose experience came from the pharmaceutical industry.
The conference kicked off with a moving patient fireside chat with cancer survivor Stefanie Joho, which set the tone for the rest of the conference. Stefanie, who was diagnosed with colon cancer at the age of 24, had two surgeries and two aggressive rounds of chemotherapy before being introduced to an immunotherapy clinical trial that eventually saved her life. Listening to Stefanie’s story in person was a powerful experience for me. It underscored the reason why we here at Antidote wake up each morning — to connect patients to research and accelerate the breakthroughs of potentially life-saving treatments.
Following Stefanie, the rest of the conference was filled with an inspiring lineup of panelists, presentations and case studies that showcased the patient voice and the steps that are being taken to ensure patient centricity in medical research.
On day one, one of the panels that I attended was “Engaging Patients by Giving Them Their Data!” The discussion kicked off with a provocative question: “Do patients want their data?” The immediate response from a patient advocate was, “Is that even a question? Why should patients give their data if they’re not getting it back?” The panelists debated whether or not a trial should be considered “complete” before a patient has their data — a concept that truly would ensure patients access to their data, which by all accounts is certainly an aspect of patient centricity.
On day two, David LeDuc from the Bonnie J. Addario Lung Cancer Association delivered a clear and profound message on putting patients first. His presentation shared his organization’s best practices for engaging and educating the lung cancer community regarding the clinical care steps that every patient should have access to, including clinical trials. David ended his speech with a memorable quote: “Everything we are doing, we need to put the patient at the center. If not, we are doing it wrong.”
As I headed back to New York City, I couldn’t help but feel a sense a pride in what we are doing at Antidote. With patients at the forefront of everything we do, we’re committed to helping patients match to a clinical trial that is right for them.
