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Patient advocates: You can now get big data training

With big data evolving so rapidly within healthcare, even the most engaged and informed patients and healthcare advocates might feel they don’t know enough to truly take part in and evaluate the design of big data in healthcare.

That’s what a new program, recently announced by the Reagan-Udall Foundation for the Food and Drug Administration, hopes to solve for patients and advocates who want to get more involved. The program is called Big Data for Patients (BD4P), and it will provide specialized training for patients and advocates on the emerging field of data science, the foundation said in a press release said. The goal of the program is to equip patient advocates with the knowledge and tools they need in order to effectively communicate with policy makers, scientists, physicians and other patients as part of discussions involving big data in healthcare.

According to the Reagan-Udall Foundation, there is a pressing need for more patients and patient advocates who not only understand the potential benefits and risks of big data in healthcare, but can also give meaningful thoughts on large-scale big data initiatives.

“Big data is an area of growing momentum in the health research space that continues to become ever more complex,” Jane Reese-Coulbourne, M.S., ChE., executive director of the foundation, said in the press release. “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.”

The foundation has been awarded $249,827 from the Patient-Centered Outcomes Research Institute to help launch and implement the BD4P program.