Advances in technologies that securely collect, store and analyze large amounts of data in the healthcare industry hold major promise for patients and healthcare providers alike. On the service side, medical facilities have access to more and better information, enabling advances like telemedicine and remote diagnostics and care.
But the patient side of things can be confusing, particularly since more and more confidential data is being stored and accessed by myriad sources. Patients deserve a better understanding of their resources and rights in the big data healthcare scenario, and helping them is the goal of the new Big Data for Patients (BD4P) training program.
The new initiative comes from the Reagan-Udall Foundation for the FDA and will be designed to provide patients and their advocates with a better understanding of big data as well as its benefits and drawbacks. According to Jane Reese-Coulbourne, executive director of the foundation, there is a significant amount of confusion on that patient and patient advocate side of the equation when it comes to collection and storage of big data.
The new program will be modeled after the National Breast Cancer Coalition’s Project LEAD, and will give patients knowledge about how data is collected and used throughout the healthcare industry, with the goal of empowering them about its benefits and capabilities. Participants will learn about the National Institutes of Health’s Big Data to Knowledge program, the FDA’s Sentinel initiative and the National Patient-Centered Clinical Research Network (PCORnet).
Coulbourne said the Foundation is aiming to roll out a pilot program by the summer of 2016 in an effort to refine educational approaches. The pilot will follow a needs analysis for the program, with a tool for assessment slated to be launched this fall.
"We'll be incorporating input from not only scientists but also teachers who are skilled in adult learning – so many of the patients who participate in these programs pick up a passion for scientific learning they never had as children,” said Coulbourne. “They are very dedicated."
Future plans for the program could include a series of classes with topics like a Big Data 101 introductory class along with advanced evaluations of scientific method.