If you were to look at the spectrum of roles Peter and Vicky DiBiaso have played in the drug development enterprise, you could be forgiven for thinking their professional lives have been naturally leading up to their current levels of personal involvement in clinical research as trial volunteers and advocates. It certainly feels that way to them, they told attendees of ACRP 2018 during their Signature Series Session today (April 29) on “A Career’s Journey in Clinical Research Comes Full Circle.”
It is now almost three years to the week since Peter DiBiaso, MHA, global vice president and managing director at IQVIA, was diagnosed with a condition that is “suggestive of” Parkinson’s disease. In the time since then, he and his wife, Vicky DiBiaso, MPH, BScN, global head of clinical operations strategy and collaboration for Sanofi, have experienced first-hand many of the challenges and satisfactions of searching for and participating in clinical trials (he as someone with a condition being studied and she most often as a healthy control subject) they hope will lead to progress in treating the condition.
After years in which she has helped plan trials as a research nurse, study coordinator, monitor, and more, “now we have to live” on the other side of the researcher-patient/caregiver equation, Vicky said. “It drives a passion to make sure we do everything possible” to push researchers and the patient community to work more closely in bringing new treatments to the public at large through trials, she noted.
One challenge: “There’s a plethora of information that’s bombarding the patient community, but most of them don’t know what to do with it,” Vicky added. Even living in Boston—in the back yard of world-class research institutions—as they do, the couple found that identifying pertinent studies in which to possibly participate and getting information from the sites conducting them could be a very frustrating chore.
Having “preached clinical trials” all his life, Peter said he was excited to get involved, and finally did find a few studies to be in involved in and valued the experience. However, simply learning in the first place about a trial’s availability can be a barrier to would-be participants. Study coordinators, site managers, and clinical research associates “are really on the front lines of this,” he noted. Further, he said, the most academically flawless protocol can still lead to a study that falls apart because the demands it places on real-world patients are all but impossible.
In the meantime, Peter is managing his symptoms with medication and by continuing his lifelong habit of being very physically active. As a couple, the DiBiasos have run the New York City Marathon several times in support of Parkinson’s disease research, and they will soon climb Mount Kilimanjaro together.
“Between the two of us, it’s both a blessing and a curse knowing that more than 90% of [treatments being studied] out there will be failures,” Peter said. “I know a cure may not be found in my lifetime…but I choose not to be defined by that.”
Author: Gary Cramer