Despite the distinct and universally acknowledged benefits of data sharing, the very real possibility that patients will withhold their health data should be a primary concern for the healthcare industry that increasingly relies on health information exchanges to improve care and reduce costs.
Healthcare organizations need to focus on improving data security and provide patients more control over their data to preempt complications that could arise from data withholding, wrote David Blumenthal, M.D., president of the Commonwealth Fund in an op-ed for The Milbank Quarterly. HIEs offer significant benefits for clinicians and patients alike, but those could be quickly diminished if patients are concerned about how their information is used and protected.
The strategies to prevent data withholding—including cybersecurity improvements and a better understanding of who withholds their health data and why—should revolve around the central principle that health data is owned and controlled by the patient. Giving patients more “granular control” of their health information through digital tools like patient portals could minimize the prevalence of data withholding.
“In the near future, electronic means of gathering and storing patient data will become normative,” Blumenthal wrote. “In the meantime, we will have to manage the problems that come with the territory. The key is to recognize patients’ unquestioned right to control their healthcare fate, including their health information, and to minimize the risks of data sharing, maximize the benefits and make it technologically safe and easy to participate.”
Although surveys show that consumers are generally skeptical about health information technology, studies are split as to whether patients withhold information from their physician. However, concerns over data privacy have mounted amid cyberattacks on the healthcare industry, and the influx of electronic patient information has fueled a secondary market in which data miners resell deidentified information for marketing purposes.