The Similarities Between Spring Peepers & Patient Advocates
By Sheila Rocchio, Vice President of Marketing and Corporate Strategy, PHT Corporation
For anyone who lives in the Northeastern region of the US, the first sound of the spring peepers is a truly joyous moment that happens each spring. The loud chorus of these tiny frogs that emerge from a semi-frozen state on the first warm spring night brings with it the knowledge that spring is finally here, the snowpocalyptic winter is over at last and summer, green grass and warmth from the sun will happen again. When I hear the peepers, I remember why I chose to live in New England in the first place and that I really do enjoy having seasons and how the cold makes me enjoy and appreciate the warmth and vice versa.
For me, hearing the stories and experiences of patients who participate in clinical research is just like hearing the peepers – it’s a reminder of what is really important and why.
I recently attended the Mobile Clinical Trials Congress in Edinburgh and heard a great talk from ePatient advocate Jack Whelen (@JackWhelan). Jack has a rare form of blood cancer and gave a fantastic and dynamic talk about why he participates in research. He does not participate in research for altruism, he does it because participation is his best chance to stay alive and do what he likes to do. He has found clinical trials not to be an option of last resort but as the best option to treat his disease while a cure is in process.
Jack is an active speaker and patient advocate, and has done his own research and presented at scientific sessions around the world. He is not a doctor but he can connect the dots and is managing his disease and looking for data, tools and resources to help him put the puzzle pieces together. In Edinburgh, Jack talked very eloquently about the importance of making research fast and efficient and how patients with rare diseases share information with one another and can play an important role in partnering with public and commercial researchers to test and develop promising new therapies.
Listening to Jack, I felt the same promise and inspiration that comes with the sound of the peepers. Personalized medicine is coming. Researchers are finding ways to alter individual cancer cells so they cannot reproduce and can kill off other cancer cells. There are true opportunities for eradicating disease such that in 50 years cancer may not be the terrifying killer it is today, but something like HIV that is now manageable and treatable. Hearing Jack reminded me of why I love being involved with the research process and that making it easier and more enjoyable for someone like Jack to provide data for a trial on his smartphone is work worth doing.
In addition to sharing his experiences as a patient with a rare disease participating in research, Jack talked about a cool project he had done as part of a hackathon that connected engineers, patients and entrepreneurs to come up with new product ideas. His group came up with a dashboard of biomarkers based on a Jack’s lab data so he could see leading indicators of how things are going. He charts this out and provides it to his doctor, who finds it really helpful and says it would be great to see this for every patient. She does not have time to assemble the data like that, but it’s really helpful to see how things are going and make adjustments and stay ahead of the disease. And that is something that could be done, right now, for any patient participating in research. There is so much opportunity to make a difference in research – it’s easy to be overwhelmed, it’s easy to do what’s always been done. But Jack and patients like him are waiting and we don’t have time.
Spring is here, the peepers are calling, their window is short but they make it count – let’s get to work!
About the Author
Sheila Rocchio has changed the face of clinical trial management by introducing new patient-focused technologies that make adopting eCOA systems a sound scientific and business decision. She can be reached at srocchio@phtcorp.com