I recently attended a conference called “Patients As Partners” which focused on the benefits of Pharma companies using patients early during the development of clinical trials. One company (I don’t remember which one) said that they had begun referring to patients in this role as “patient scientists”. I hadn’t heard this term before but it struck me as profound to the point where I even tweeted about it…and I don’t tweet on a regular basis.
Why did I find this term so encompassing? First a bit of background. I was diagnosed with a blood cancer called Multiple Myeloma and given 2-3 years to live. That was 23 years ago but with lots of treatment…chemotherapy, 3 transplants (including one allogeneic transplant using donor stem cells), several rounds of radiation and 2 clinical trials. During the last 15 years I’ve become quite active in myeloma: facilitating our local San Francisco Bay Area myeloma support group, volunteering with several myeloma advocacy organizations, and attending medical conferences like the annual American Society of Hematology and International Myeloma Working Group conferences. And most recently, I’m helping provide a patient perspective during the design and approval of myeloma clinical trials for SWOG (a National Clinical Trial Network group) and the National Cancer Institute.
At these conferences and clinical trial meetings, almost all the attendees are MD’s and PhD’s and it can honestly be quite intimidating to ask questions and make suggestions. But then I heard the phrase “patient scientist”. In fact, none of those doctors in the room have the expertise that I do being a myeloma patient. None of them have been treated with chemotherapy, had a transplant, or been the “recipient” of a dozen bone marrow biopsy/aspirates. I really am an expert, or “scientist”, in being a patient, having experienced the physical and mental demands that go along with trying to survive with good quality of life. And by sharing experiences with other patients, I’m able to offer a valuable perspective when designing future trials. As a “patient scientist”, I take very seriously my role and the responsibilities that go along with it. And I’m always appreciative that those MD’s and PhD’s consider my input as they do each others.
Patient Empowerment Network Board Emeritus
Jack Aiello is a former Silicon Valley high technology executive living in San Jose, CA. Jack was diagnosed with multiple myeloma in 1995 and has had three transplants for his condition. While the treatments have given him extended survival, he has had disabling side effects. After retiring, Jack has become a leading myeloma support group leader and traveled the US and overseas to attend medical conference, patient forums and inspire advocacy among patients.