Misidentifying sufferers can have tragic penalties.
Quite a few catastrophic circumstances and close to misses have been collected by Patient ID Now, a coalition of well being care organizations we’re affiliated with that’s devoted to advancing a nationwide affected person identification and matching technique.
In one example from the Affected person ID Now web site, a lady had a routine mammogram, however by no means acquired the outcomes. Assuming that no information was excellent news, she talked about the mammogram to her physician months later throughout her annual bodily. That dialog led to the invention that her outcomes had been misfiled within the chart of a deceased affected person who shared her title. The mammogram confirmed most cancers which, in the course of the one-year delay, had turn into terminal.
This story is just not an outlier.
There’s way over anecdotal proof that affected person misidentification is a severe and widespread drawback in U.S. well being care. A Government Accountability Office report discovered that 45% of huge hospitals reported issue precisely figuring out sufferers via digital well being data. A report from Pew Charitable Trusts notes that precisely matching sufferers to their medical information might be as little as 80% inside a single care setting, and as little as 50% amongst organizations that shared digital well being data.
This epidemic of misidentification is rooted within the lack of a nationwide affected person identification technique.
As we speak, a hospital’s or clinic’s potential to precisely establish the sufferers it serves usually hinges on a precarious patchwork of Social Safety numbers, telephone numbers, driver’s licenses, and residential addresses that strains beneath the load of an more and more cell inhabitants with well being data scattered throughout a number of care settings.
Covid-19 has underscored that affected person identification is an rising problem for public well being. In the course of the pandemic, there have been studies of sufferers not receiving Covid-19 test results, or receiving the improper outcomes, due to misidentification. And lots of acquired vaccinations outside of their usual doctor’s office at pop-up and pharmacy places, including complexities about updating medical information.
Progress towards a nationwide affected person identification technique has been hindered for greater than 20 years due to a rider inserted into the federal budget that prohibits federal funds from getting used to develop a singular well being identifier normal.
The historical past of this annual rider dates again to 1996, when Congress handed, and President Invoice Clinton signed, the Health Insurance Portability and Accountability Act. One in every of HIPAA’s many objectives was to assist the transition from paper to digital information, and it referred to as for creating a singular identifier. Rep. Ron Paul (R-Tex.), Congress’s main libertarian on the time, noticed such an identifier as authorities intrusion into non-public well being care and inserted language into the federal funds that barred the federal government from spending any cash to develop a singular identifier. That ban has been in place ever since.
Bipartisan help for repealing this ban has been rising in Congress, with the Home of Representatives removing the language from its Labor, Well being and Human Companies, Training, and Associated Companies appropriations invoice for 3 years, and the Senate eradicating the language for the primary time from its draft Labor-HHS invoice launched for fiscal 12 months 2022.
Ultimate negotiations, nevertheless, resulted within the ban being reinserted to the 2022 funds, persevering with the availability that stifles progress to enhance affected person security and privateness. President Biden signed the funds into legislation earlier this 12 months. Simply final month, the Affected person ID Now Coalition continued the push to take away the rider from the 2023 fiscal 12 months appropriations invoice in a letter to House appropriators and Senate appropriators that was signed by 119 trade stakeholders.
The well being care group has a accountability to do every thing potential to guard the folks and communities it serves. To satisfy this mission, it wants to maneuver ahead with severe discussions relating to the form, scale, and value of a nationwide affected person identification technique, one which ensures the security of sufferers and the privateness and safety of their private and medical data.
This nationwide technique may embrace quite a lot of options which were proposed, together with, however not restricted to, a singular affected person identifier; biometrics; standardization of demographic parts equivalent to house handle or phone quantity; or various algorithms, and would require quite a lot of concerns to be taken under consideration.
Because the Affected person ID Now coalition proposed in its Framework for a National Strategy on Patient Identity, a nationwide technique ought to improve affected person match charges, defend affected person privateness and safety, help interoperability, and enhance standardization of well being information, information high quality, and well being fairness. To get there, the federal authorities would want to herald stakeholders from throughout well being care and public well being to handle these points.
This isn’t only a bureaucratic problem. Along with enhancing security and lowering well being care prices, a nationwide affected person identification technique would empower sufferers. Latest federal laws, such because the provisions prohibiting information blocking within the twenty first Century Cures Act, give shoppers larger potential to retailer, mixture, use, and share their well being data utilizing apps of their selection. Bettering affected person identification would make it simpler for full and correct well being information to observe people wherever they go and permit them to higher management who can entry and share their private well being data.
Congress should lastly handle this outdated ban to make true progress towards fixing certainly one of well being care’s most enduring issues. Well being care has spent the higher a part of 20 years investing in an interoperable, value-based, patient-centric ecosystem. A nationwide technique for affected person identification is important for connecting the fragmented well being care system, whereas making it safer and extra environment friendly for sufferers and well being suppliers.
Wylecia Wiggs Harris is CEO of the American Well being Data Administration Affiliation (AHIMA), a worldwide nonprofit affiliation of well being data professionals. Tom Cox is president of Experian Well being, a supplier of well being care software program options. AHIMA and Experian Well being are members of Affected person ID Now.