Despite gaining support in the U.S. House of Representatives, industry efforts to establish a unique patient identifier in U.S. healthcare—long advocated by many health IT leaders—hit another roadblock Wednesday.
Senate appropriators did not include language overturning the two-decade-old ban on creating unique patient identifiers in the draft fiscal year 2020 funding bill (PDF) for the Department of Health and Human Services (HHS) released Wednesday.
A Senate appropriations subcommittee released its draft funding bill that would increase discretionary funding for HHS to $93.4 billion, an increase of $2.9 billion over fiscal year 2019.
The draft bill also includes $42.1 billion for the National Institutes of Health (NIH), a boost of $3 billion from last year. Of that, $500 million was earmarked for the NIH's All of Us precision medicine initiative, a $161 million increase. The Brain Research through Application of Innovative Neurotechnologies project also would receive $500 million in funding, a $71 million increase.
"The $3 billion NIH increase in this bill marks a 40% increase over the past five years, paving the way for new advances that are giving hope to millions of families," U.S. Senator Roy Blunt, R-Missouri, chairman of the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies, said in a press release.
The bill also provides $70 million more to combat the opioid epidemic and $305 million more for mental health programs, including $50 million more for certified community behavioral health clinics.
But health IT groups decried Senate appropriators' failure to include needed provisions in the bill to lift what they see as an outdated federal ban on funding for a unique patient identifier.
"This outdated ban has contributed to healthcare waste and misspending while threatening patient safety for far too long. With the UPI ban in place, studies show patients are accurately matched to their medical records as seldom as 50% of the time. That is a failing score that Washington must not accept," Joel White, director of Health Innovation Alliance (formerly Health IT Now), said in a statement.
Many health IT leaders see the investigation and creation of unique patient identifiers as critical to solving issues with patient matching and potentially minimizing misidentification and medical errors.
Although HIPAA initially required the creation of a health identifier in 1998, Congress overruled the legislation, barring federal agencies from investigating or creating patient identifiers out of privacy concerns.
The House in June voted in favor of lifting the ban on using federal funding to create patient identifiers as part of the Foster-Kelly amendment to H.R. 2740, the Departments of Labor, Health and Human Services and Education, and Related Agencies Appropriations Act of 2020.
Leslie Krigstein, vice president of congressional affairs at the College of Healthcare Information Management Executives, told FierceHealthcare the work to overturn the ban has been 20 years in the making, and she was not surprised or discouraged that Senate appropriators failed to take up the effort.
"We had no illusion in our mind that this was going to be easy, but we have an opportunity to capitalize on the momentum of the House action," she said.
As the House and Senate passed two different funding bills, Krigstein said she is "cautiously optimistic" that the effort to overturn the ban can be brought up again in a conference committee.
Industry groups have stepped up education and awareness campaigns around the patient identification problem in healthcare. Last month, 56 healthcare organizations signed a letter (PDF) to Senate appropriations committee leaders urging them to remove the prohibition against federal funding for national patient identifiers.
And stakeholders were buoyed by the House's support. "We’ve taken this ball further than we have in the last 21 years," Krigstein said.
The Health Innovation Alliance also is calling for lawmakers to change course and plans to host a congressional briefing in October that will urge the Senate to follow the House's lead to remove the ban.
Health IT and provider groups have long supported the development of a unique patient identifier. In 2017, 25 organizations—including the American Medical Association and HIMSS—called on lawmakers to allow the Office of the National Coordinator for Health IT (ONC) to provide “technical assistance” to efforts led by the private sector.
In February 2018, health informatics leaders from England, Scotland and the U.S. called on Congress to lift the unique patient identifier ban. In an op-ed published in NEJM Catalyst, the group said Congress responded to a “highly vocal minority” and called on ONC to push lawmakers to lift the decades-old ban and begin piloting possible solutions.