This June, U.S. the House of Representatives adopted four amendments offered by Congressman Bill Foster (D-IL) as part of the appropriations bill for the Departments of Labor, Health and Human Services (HHS), and Education. One of which was lifting a ban on “adopting standards” related to a nationwide unique patient identifier (UPI). Watch Congressman Foster introduce the amendment on Youtube for an overview of some of the benefits.
In this post, I want to debunk and clarify some misconceptions I hear about UPI and where we might see UPI efforts go from here. In the past, I’ve written about different paths to reaching a true UPI, and these are the challenges I see to approaching it from the top-down.
#1 Congress has voted to create a national patient identifier.
To the contrary, we are still very far away from even having a debate on whether a national patient identifier would be worth it. Congress is instead attempting to lift a ban from the late ’90s on spending government money researching a national patient identifier or even helping pick a standard, such as ASTM E 1714. The ban was put in place over fears over privacy and the idea that networking hospital systems would lead to widespread data breaches.
Today, we live in a world where cloud computing is ubiquitous and HHS is mandating that systems connect and interoperate on a massive scale. Understanding how a unique patient identifier (UPI) at a national level could help solve those problems is worth a few grants.
#2 Nation-wide patient identifiers have been successful in other countries.
Relatively few countries have implemented a national patient identifier. Of those that do, the UK presents an interesting case study – they have essentially had a national patient identifier since the NHS was created in the 1950s. Digitizing that existing identifier, and linking records to the digital “Spine” of the NHS still has a marginal error rate. This report on the NHS number outlines some key challenges.
I’ve always been fascinated by Taiwan’s smart card system. In addition to a UPI, everyone gets a card that stores medications, allergies, and recent visits. But according to other reports, the system as a whole is not totally interoperable.
#3 We can just start counting a 1 and go from there.
Identifiers, especially ones with long lifetimes need a lot of design work. Designers of such an ID would need to consider not only technical problems like the one above but literally all aspects of how humans would interact with it. Can you memorize it? Does it encode other data like SSNs used to encode where the card was issued? How long until we run out of them? Can one be issued in a decentralized way? Is it complex to enter manually? The ASTM E 1714 Wikipedia page goes through a complete list of design characteristics, from which they arrive at a 29-character long ID!
Take some time to read up on check digits. Essentially, you can create an identifier that encodes a built-in check. If the numbers don’t line up, the person entering the ID (or rather the system validating the input) can correct errors in real-time. Which types of manual entry errors to check for becomes a design problem though. ASTM uses 6 digits for check digits to cover a large swath of potential entry errors.
#4 A UPI solves problems like opioid abuse and interoperability out of the box.
A national-level UPI would need a lot of design to solve for different use cases. Congressman Foster avers that the opioid epidemic and reducing medical errors can be both be solved with UPI, but those are very different use cases. Preventing fraudulent activity is very different from promoting safety within clinical settings.
Preventing “doctor shopping” would see the UPI with some kind of centralized database that tracks opioid orders. Preventing misidentification at the bedside would need patients to be engaged in knowing their ID – imagine a nurse asking you for your check digits! Designing these value-add systems around a UPI is a secondary challenge that unfortunately doesn’t really begin until the identifier is in place.
#5 The American people are ready for it.
The past decade of the “Obamacare” debate is especially disappointing to those who observe healthcare on the ground level. The Affordable Care Act was a market-based approach to deliver healthcare access to a much broader swath of the population. Political marketing took a halfway decent plan and demonized it in the minds of many.
A UPI at the national level has overtones of big government, something that many Americans are wary of. In the current age of privacy challenges in consumer technology, Americans will be even more wary of centralizing health data. Finally, depending on how the idea is implemented it may be directly attached to proposals for socialized medicine currently in vogue with Democratic presidential candidates, making it a political issue rather than a practical one.
A nationwide universal patient identifier is not coming anytime soon and faces both technical and political challenges to get done. That’s not to say there is no value in it. A great read on the issues, costs, and benefits of a nationwide unique patient identifier is RAND report: Identity Crisis: An Examination of the Costs and Benefits of a Unique Patient Identifier for the U.S. Health Care System. At Redox we will be eagerly watching to see where this goes, but in the meantime, we’re happy to share how we help customers manage patient identity in a UPI-less world.