New SACHRP board member explains goals, HRP advocacy
Efficiency is chief goal
IRB Advisor asked Diana T. Chingos, MS, MFA, executive director of the Noreen Fraser Foundation in Los Angeles, to tell readers a little more about herself and her hopes and goals for the Secretary’s Advisory Committee on Human Research Protections (SACHRP), to which she was appointed in October 2014. SACHRP was created in 2001 by the secretary of the U.S. Department of Health & Human Services (HHS). Chingos began her term on Oct. 29, 2014 and will serve through Oct. 29, 2018.
IRB Advisor: Would you please tell us a little about your work in human subjects research — both your current position and your past work in the field?
Chingos: I come to my work in human subjects research first as a patient: I’m a three-time survivor of early-onset breast cancer. Admittedly, I’m not a typical patient; most people don’t get diagnosed with cancer while in their 30s and then have two more diagnoses before the decade is over. I have educated myself beyond the efforts of most patients. I’ve spent a lot of time around both patients and academic researchers, observing what slows the research process. I don’t purport to speak for all patients in this richly textured country called the U.S. I do my best to consider all perspectives while keeping patients’ interests front and center.
Since 1999, I’ve served as a patient advocate in research, engaged with breast cancer researchers, mostly at the University of Southern California, the City of Hope, and the University of California, on research projects that require patient advocate participation and in Team Science for the SU2C [Stand Up to Cancer] Epigenetics Dream Team, among others.
I’ve advised various federal, state, and local research funding entities, including the State of California Breast Cancer Research Program, the National Cancer Institute’s Investigational Drugs Steering Committee, and the NCI/NIEHS Breast Cancer Environmental Research Program’s External Advisory Board/Working Group. Also, I’ve reviewed grants as a consumer reviewer/patient stakeholder reviewer for the Department of Defense Breast Cancer Research Program’s Integration Panel and, most recently, for the Patient-Centered Outcomes Research Institute.
Since 2006, I’ve served on the IRB at the University of Southern California. I have also performed data and safety monitoring for an NCI-sponsored early phase clinical trials group called the California Cancer Consortium.
Overall, I’m familiar with the Sisyphean task that is designing, opening, conducting, and completing a clinical trial in its various phases, and I am particularly interested in how to accelerate research to benefit patients and to make jobs easier for researchers without compromising patients’ protections.
We are living in a really compelling time for research. We have technologies and capabilities that far exceed anything we’ve had in the past. We can put the pedal to the metal, as they say on the race track, and that’s a blessing and a curse. We need the big payoff and we need to figure out how to achieve it efficiently and safely.
IRB Advisor: What do you see as the most important aspects of SACHRP’s role and work, and what are your specific goals?
Chingos: I think providing guidance on the harmonization of regulations across the federal government and the reduction of regulatory burden are the key areas for SACHRP. All of their work is important. But most important is to streamline these processes so that everyone benefits, instead of no one. This sounds like dramatic language, but when research progress slows due to an unfocused, cumbersome system, no one benefits. I’m very hopeful for the National Cancer Institute’s Clinical Trial Network, a reorganization of its system. Working more efficiently is never a bad idea. We need to achieve efficiencies in the ethical conduct of research across the entire research enterprise, public and private.
I aim to represent patients’ perspectives credibly and capably while communicating the urgency to accelerate research progress now, not later. I believe that patient stakeholders play a key role in the design and conduct of research. Our role as patient stakeholders far exceeds that of the research subject. To whatever extent I can influence this perception, in all of my work, is at the top of my list of goals.
