Network Partners with PCORnet®, the National Patient-Centered Clinical Research Network, have released a statement explaining how the Network handles sensitive data and protects patient privacy. The statement is yet another way that the PCORnet community continues to demonstrate its commitment to deliver on the founding values of patient centricity and trust.
“The PCORnet infrastructure was designed to facilitate research that is uncompromising in its patient centricity, and there is no question that patients have a right to know how we are safeguarding their privacy,” said Keith Marsolo, PhD, a co-investigator in the Distributed Research Network Operations Center of the Coordinating Center for PCORnet. “We have always had stringent protections in place, and now our data privacy statement takes the additional important step of sharing with patients exactly how their personal data is handled with care.”
Shedding light on common questions
The PCORnet data privacy statement is comprehensive, detailing the Network’s protective infrastructure, how patient information is collected and securely shared, and how the data is accessed and used for research. It also clears up some common misconceptions about PCORnet-enabled data. For example, a key security feature of the PCORnet infrastructure is that the data actually stay under the care of the participating healthcare institution and are not amassed into a single data pool or data warehouse. Data are only accessed within the context of specific research projects, and the participating institutions decide whether or not to share the minimally necessary data needed for research on a case by case basis.
Importantly, the statement was drafted and approved as a collaborative effort by PCORnet Network Partners and written to be easily understandable by audiences despite its technical nature. “The commitment PCORnet places on data privacy is one of the many ways PCORnet exemplifies its commitment to patients. I take a great deal of pride in knowing that PCORnet is steadfastly committed to keeping patients, their goals, and their privacy at the heart of the mission. By involving partners, such as myself, in processes like the development of the data privacy statement, blind spots are alleviated and true collaboration is formed,” said PCORnet Patient Partner, Susan Lowe. PCORnet patient partners who participate in the governance of the Network reviewed the statement for clarity, and they –along with the rest of the PCORnet Steering Committee – voted to adopt the statement.
“We believe that this statement will serve as a win-win for both patients and researchers,” said Marsolo. “When patients are given full transparency as to how their personal information is handled with care, trust is built. With that trust, we can continue to build on and use the PCORnet infrastructure to deliver fast, trustworthy answers that deliver better health outcomes for all.”