The field of data science is evolving so rapidly that patients and patient advocates often do not feel knowledgeable enough to take part in research design or evaluation. A new initiative called Big Data for Patients (BD4P) has been set up to provide specialized training for patients and advocates on the emerging field of data science.
Launched by the Reagan-Udall Foundation (RUF) for the Food and Drug Administration (FDA), BD4P will seek to 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 is an independent, nonprofit organization created by Congress to advance the mission of the FDA by promoting regulatory science and research. To establish the BD4P project, RUF received $249,827 in grant funding from the Patient-Centered Outcomes Research Institute (PCORI), an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research.
RUF said that patient advocates who complete BD4P training should be ready to offer 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).
“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,” said Jane Reese-Coulbourne, executive director of RUF, in a prepared statement. “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.”
Following a needs assessment and educational material development, training workshops will be held and an online community generated within two years of program launch, according to RUF.
RUF is actively exploring collaboration opportunities in support of this effort. Interested organizations may contact BD4P@ReaganUdall.org to learn more.
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