The Identity Problem

by Nick van Terheyden, MD aka @DrNic1

Dr Nick Dell HealthI struggle to keep my contacts in order and synchronized, not just across devices but across ecosystems and channels. How do you keep your old style digitized version of the “rolodex” in sync with your twitter followers and LinkedIn connections? How do you know when your friends join a new social media channel that you are member of so you can connect there?

I’ve tried many tools and techniques and had been using Brewster (which recently was acquired by FullContact) and the transition offered me 3 months of premium access to their service. The free version offers backup and some syncing across limited accounts – the premium version expands to multiple accounts and includes business card scanning.

The early results were surprising – in my contact database the system was offering me updates to over 40% of my contacts. I was suspicious but as I investigated I discovered that using some clever back end algorithms it was revealing updates too many of my connections including some I validated manually that good friends revealed were early forays into social media including a blog on Ice Cream and a corresponding Pinterest account.

So in social media and the commercial world we can link data and people. In fact the commercial organizations do this very effectively that Target collected enough information on individuals linked through a unique identifier to identify a high school student was pregnant and mail her maternity adverts before the “news” had leaked to her father:

“Target assigns every customer a Guest ID number, tied to their credit card, name, or email address that becomes a bucket that stores a history of everything they’ve bought and any demographic information Target has collected from them or bought from other sources”

The healthcare system is rife with enough challenges – why is it we have one that is of our own making? Why is there so much resistance to the idea of uniquely identifying a patient so we can attach the correct medical data to the correct person and deliver the correct medical treatment to that same individual?cmiochat_ patientID

In 1996 the Health Insurance Portability and Accountability Act (HIPAA) was signed into law and it specifically called for:

“a standard unique health identifier for each individual”

But in 1998, Congress eliminated that requirement and even prohibited the use of federal funds to develop a unique identifier. Anyone who knows me will know my passion for privacy and individual rights but in this instance the harm and cost foisted on the system, providers, payers and ultimately the patients is gargantuan!

Click to enlarge

Figure: The Percentage of Waste by country spent on Healthcare Administrative and Insurance

The Social Security number has become the de facto universal (and most valued) US national identifier. Created in 1935 for the purposes of tracking social security benefits it has been hijacked and subsumed into multiple other uses. The gathering and use of this placed a large target on the back of healthcare data and as of the end of last year over 112 Million healthcare records were breached.

As far back as 2009 HIMSS issued a Patient Identity Integrity White Paper making the case for identity management and in 2010 the recently retired Gartner Analyst and Research Director Barry Hieb and now Chief Scientist at Global Patient Identifiers wrote this piece in e-Journal of Health Informatics: A Cost Effective Method to Create a Universal Healthcare Identifier System (full PDF here) advocating the need and a path to the creation of a universal patient identifier:

“The prohibitive cost associated with creating a universal healthcare identifier has been one of the primary barriers to the creation of such a system. The Voluntary Universal Healthcare Identifier (VUHID) project takes a radically different approach to solving this problem compared to previous proposals. This article examines the economic impact of this approach and discusses why the unique VUHID approach permits implementation of the system at a small fraction of previously estimated costs”

Despite a rational approach that enabled individualized control and security it has not taken off. We continue to waste resources, duplicate tests, decrease the overall safety and increase errors in our healthcare system that according to the RAND study: Identity Crisis; An Examination of the Costs and Benefits of a Unique Patient Identifier for the U.S. Health Care System could offer a saving of $77 billion per year if implemented with sufficient penetration – they cite 90% level of adoption.

Have a I raised your heckles advocating for a unique identifier – is it as Adrian Gropper Chief Technology Officer for Patient Privacy Rights stated (@agropper):

“Implementing a unique patient identifier would add nothing to our health care system beyond coercive surveillance”

Or, as Twila Brase, RN, Co-founder and President of Citizens’ Council for Health Freedom, says its important not to have it to prevent the creation of a “nationalized” healthcare system (I’d interpret this as a single payer system like the VA and Medicare?):

“The most important reason is our opposition to building a national health care system. Without a national identification card for patients, it would be difficult to nationalize health care”

Or do you side with Douglas Fridsma, MD, PhD, is President and CEO of the American Medical Informatics Association who says people care a lot about the privacy and security of their medical data but want immediate access and transferability with control over who can see and use their medical data and believes that:

“Giving every American a unique patient ID could help address all of those issues”

Join me and your clinical informaticist colleagues this Thursday April 28 at 7pm Eastern/4PM Pacific for #CMIOChat.

Here are the topics we’ll be considering:

T1 Why does the US not have a Unique Patient Identifier?

T2 Is it possible we can come up with agree and use a Unique National Patient Identifier and if so how?

T3 What alternatives are practical and cost effective to a Unique patient identifier?

T4 How do we protect patient confidentiality and privacy in a world with a unique patient identifier?

 

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