Innovation drives the biotechnology industry, but despite the dazzling power of science and technology, sometimes you can achieve more with a little old- school listening.
Face-to-face engagement with patients and careful listening may seem archaic but it can be a fast and powerful way to understand the unmet needs of patients.
It doesn’t require a slide deck, no agenda-in-advance, or IRB approval. It is the meat and potatoes of progress. It involves looking people in the eye, rolling up your sleeves, and being present.
Family life in a rare disease can be gritty. It’s a day-to-day routine and the players are constantly improvising just to make it out the door in the morning. With every fleeting thought about the future comes either crushing reality or a hopeful reminder to manage expectations.
Living day-to-day with rare disease is real and raw. Sleep vanishes, diapers last through adolescence, and arguments end with words that can never be taken back. There isn’t time for industry to develop an app to ask questions that every family is anxious to talk about, especially if it means that doing so will help speed the development of medicines for people without therapeutic options.
The world of biotech needs to create a collaborative and compliant standard of face-to-face interaction with patients. The answer isn’t to be patient-centric, but rather human-centric.
If we are to develop clinical trials with endpoints that truly measure success, we need to get gritty. We need to understand what truly matters in each patient’s life and the most efficient strategy to accomplish that is to be present and just ask the family. Doing this right requires being present in the community from the beginning, through the middle, and past the end.
Valuable patient engagement is not just a matter of buying a table at a foundation’s annual conference. Real partnership involves including patients in the creation of protocols rather than asking for their feedback after it’s complete. Patient interaction does not rely on animated slides because presentation is the opposite of listening. Want to know how far a family is willing to travel to participate in a clinical trial? Be present and ask.
Caretakers and advocates are eager to partner in development. They want to do what they can to drive discovery. Rare disease families are willing to answer the same questions over coffee that companies spend months developing algorithms and heat maps to answer. Showing up and asking questions is efficient and human-centric. Industry leaders who sit down, roll up their sleeves, and care enough to ask can change the rare disease landscape.
Awareness starts with the patient story and it takes a lot for a person to tell that story. It is exhausting to tell that story. But that story is what inspires dedicated scientists to go to work early in the morning and leave their office late at night.
Recognizing patients as key opinion leaders and engaging each appropriately is a critical step for any biotech seeking to be innovative.
Imagine what happens when empathy and integrity drive an innovative company. That’s the best way to develop treatments that transform the lives of families living with rare diseases.
Luke Rosen is Founder of KIF1A.org and Associate Director of Patient Engagement at Ovid Therapeutics
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