Reagan-Udall Foundation Announces Big Data Training Program for Patient Advocates

Education initiative aims to help patient advocates navigate Big Data

Jul 09, 2015, 09:05 ET from Reagan-Udall Foundation for the FDA

WASHINGTON, July 9, 2015 /PRNewswire-USNewswire/ -- The Reagan-Udall Foundation (RUF) for the Food and Drug Administration (FDA) today announced a new program, Big Data for Patients (BD4P), that will provide specialized training for patients and advocates on the emerging field of data science. BD4P will equip patient advocates with the knowledge and tools they need to impact Big Data issues through communication with policy makers, scientists, physicians and other patients.

RUF's work with patient advocates has highlighted that, because the field of data science is evolving rapidly, even the most informed and engaged patients and advocates often do not feel equipped to take part in research design or evaluation. Yet, patient engagement in data science is crucial to delivering a health care system that is informed by the best available data and primed to improve patient outcomes.

BD4P is designed to address the pressing need for more patients who understand the potential benefits and important cautions associated with Big Data. Patient advocates who complete the training will be ready to share meaningful input on large-scale Big Data initiatives, such as the National Institutes of Health's (NIH) Big Data to Knowledge program, FDA's Sentinel initiative, and PCORnet, the National Patient-Centered Clinical Research Network, which is funded by the Patient-Centered Outcomes Research Institute (PCORI).

"Big Data is an area of growing momentum in the health research space that continues to become ever more complex," said Jane Reese-Coulbourne, M.S. ChE., executive director of RUF. "As we move toward a patient-centered health care system, there is an increasing demand for the involvement of patients and advocates with greater knowledge and better critical appraisal skills in Big Data.  This program will make data science more relatable and less intimidating for patients, ensuring they are better equipped to actively engage in the design, conduct, and application of research, with a focus on the issues most relevant to them."

RUF has been approved for a $249,827 Eugene Washington PCORI Engagement Award by PCORI, an independent, non-profit research funding organization, to support the launch and implementation of the BD4P program. The BD4P program will add to a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI's work. For more information about PCORI's funding to support engagement efforts, visit:

BD4P will be developed in collaboration with patients and key stakeholders to ensure that participants can contribute to ongoing and future projects. Following a needs assessment and educational material development, training workshops will be held and an online community generated within two years of program launch. Special effort will be made to document the development methodology so that the program could be expanded to additional audiences, including clinicians and researchers, as well as to additional content areas that complement the RUF regulatory science education agenda.

RUF is actively exploring collaboration opportunities in support of this effort. Interested organizations may contact to learn more. For additional information you can visit the Big Data for Patients website.

About the Reagan-Udall Foundation for the FDA
The Reagan-Udall Foundation for the FDA is an independent 501(c)(3) not-for-profit organization created by Congress to advance the mission of the FDA by advancing regulatory science and research. With the ultimate goal of improving public health, the Foundation provides a unique opportunity to bring all parties to the table (FDA, patient groups, academia, other government entities and industry) to work together in a transparent way to create exciting new regulatory science.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.


SOURCE Reagan-Udall Foundation for the FDA