Offer to fund national patient IDs reignites fight for privacy
The ID is a number that healthcare providers would use to match and manage patient information and, for example, help distinguish patients of the same name. Unique identifiers have been touted as a way to reduce clinical confusion and improve patient safety and data sharing, while strengthening a motley system of medical privacy. The United States is an outlier among developed countries by not having a universal patient identifier, experts say.
But the current push comes amid a pandemic that has sparked heated debate over issues such as vaccine passports and other digital credentials that touch on privacy and fairness issues.
The most prominent proponent of the funding ban is Sen. Rand Paul (R-Ky.), Whose father, former Rep. Ron Paul, devised the language that was inserted into annual spending bills. Opponents like Paul fear that a patient ID could invade privacy and allow the government to track a person’s medical history – concerns similar to those the ACLU articulated.
Democratic Senate Appropriators removed the ban on a spending bill this fall, claiming this has been an obstacle for healthcare facilities reliably sharing patient information and for public health entities tracing contacts and tracking vaccinations during the Covid-19 pandemic. Paul responded with legislation (S. 3124 (117)) aimed at removing the authority of the HHS to develop health identifiers. Texas Republican Representative Chip Roy presented a version of the House, HR 5812 (117), raising concerns about patient monitoring and profiling.
The fate of the identification system will be likely to be determined in February, when an interim spending measure, HR 6119 (117), is expected to expire.
Senator Bill Cassidy (R-La.), A physician who supports patient identification, argued that an identifier could improve privacy by ending the need to trust Social Security numbers, which , if compromised, could make financial and medical data vulnerable.
“I respect Rand’s concern for privacy. I just think he got it all wrong, ”Cassidy said.
Outside experts say privacy concerns are less of an issue than Paul and others claim.
David Bates, professor of health policy at Harvard School of Public Health and professor of medicine, said Paul’s concerns are not legitimate and reflect only a “very vocal minority” of the population.
Kirk Nahra, one of WilmerHale’s senior privacy lawyers, said a national identifier would likely bring significant benefits with manageable risks to privacy, although this is still unresolved.
This is where the HHS Computer Health Report comes in.
“We would love to see them make a recommendation that [the ban] be eliminated, ”said Mari Savickis, vice president of public policy at the College of Healthcare Information Management Executives. “Is this going to happen?” That’s the million dollar question.
Supporters of the system say the pandemic has underlined the country’s outdated public health infrastructure, which has hampered its response to Covid-19. The holes included poor data sharing, which advocates say patient IDs could help correct by enabling information like positive test results to flow more freely, allowing for a faster response.
Many key technical details of what a Patient ID would actually look like have yet to be resolved, including which entity manages and assigns the IDs, said Shaun Grannis, vice president of data and analytics at Regenstrief. Institute, a research organization. Medicare already uses a beneficiary identifier consisting of a string of letters and numbers.
Grannis and other experts say the problem touches social, political and economic fault lines, despite being shrouded in technology.
“There is so much friction in the movement of health information today in our system. It would shift some of that friction, ”said Julia Adler-Milstein, director of the Center for Clinical Informatics and Improvement Research and professor of medicine at the University of California, San Francisco.
Dozens of influential healthcare organizations have come together to form the Patient ID Now coalition, including Intermountain Healthcare, the American Heart Association, the American Health Information Management Association, and the American College of Surgeons. Foster argues that since the language removing the ban is in the text, the momentum is on his side.
But despite the push, not everyone is optimistic about repealing the ban.
“It’s a very tough battle up front,” said Savickis. “Corn [the report] is something that Congress requested and therefore [the Office of the National Coordinator for Health Information Technology] must deliver it so we can move forward.