The Truth About Health IT Standards – There’s No Good Reason to Delay Data Liquidity and Information Sharing

David C. Kibbe and Peter Neupert

Now that the Obama administration and Congress have committed to spending billions of tax payers’ money on health IT as part of the economic stimulus package,  it’s important to be clear about what consumers and patients ought to expect in return—better decision-making by doctors and patients. 

The thing is, nobody can make good decisions without good data. Unfortunately, too many in our industry use data “lock-in” as a tactic to keep their customers captive. Policy makers’ myopic focus on standards and certification does little but provide good air cover for this status quo. Our fundamental first step has to be to ensure data liquidity – making it easy for the data to move around and do some good for us all.

We suggest the following three goals ought to be achieved by end of 2009:

  • Patients’ clinical data (diagnoses, medications, allergies, lab results, immunization history, etc.) are available to doctors in 75% of emergency rooms, clinic offices, and hospitals within their region.
  • Patients’ doctors or medical practices have a “face sheet” that lets any staff member see an all-up view of their relevant health data, including visit status, meds, labs, images, all of which is also viewable to patients via the Web.
  • Every time patients see providers, they are given an electronic after-visit report that includes what was done and what the next steps for care will be according to best practices and evidence-based protocols, whenever these are applicable.

Some who view this seemingly humble list of achievements will say that we can’t do it, because the standards aren’t ready, or the data is too complex. They’ll say that delays are necessary, due to worries about privacy or because too much data is still on paper.

We disagree.  We believe that where there’s a will, there is going to be a way.  And we already know most of what we need to know to achieve these goals.  We know that:

  • huge amounts of digital data exist, already formatted electronically, but scattered across many proprietary systems (meds, labs, images).
  • software and the Internet makes it possible—in a low cost, lightweight way—to get data out of these databases to the point of decision making (to the ER doctor, the patient/consumer, or the  primary care physician).
  • people are hungry for information in whatever form they can get it:
    • Getting it on paper is better than nothing
    • Getting it quickly is better than getting it late
    • Getting it in non-standard digital format is better than paper (software is pretty good at transforming non-standard to standard formats)
    • Getting it in a standard format is better
    • Getting it in a structured, standard format is best
  • An integration “big bang” -- getting everybody all of a sudden onto one, single, structured and standard format—can’t and won’t happen.

We don’t have to wait for new standards to make data accessible—we can do a ton now without standards.  What we need more than anything else is for people to demand that their personal health data are separated from the software applications that are used to collect and store the data.

This idea of separating health data from the applications is very important, and a better way to frame the discussion about how to achieve data liquidity than is the term “interoperability,” which we find cumbersome and opaque. Smart people, armed with software, can do incredible things with data in any format – so long as they can get to it.

Customers of health information systems want to re-use their health data, and in ways they haven’t always thought of or anticipated.    However, many enterprise system vendors make it difficult or expensive to get access to the data—to separate it from the application.  They believe that proprietary “lock-in” allows them some form of strategic advantage.      

We understand that IT vendors are in business, and need to create strategic value for their products.  And we are very much in favor of that—in rules, in workflow, in user experience, price and flexibility, and so on. However, vendors should not be able to “lock” the patient or enterprise data into their applications, and thereby inhibit the ability of customers and partners to build cross-vendor systems that improve care.

It’s possible for vendors to provide value without the need for lock-in.  There are lots of examples of this, for example, the Health Information Exchange in Wisconsin and CVS MinuteClinic.  In the former, value is clearly being added immediately to users in the ED, without requiring all the participating EDs to change their systems or to be standards compliant (or CCHIT certified).  At MinuteClinics, summary after-visit health data are made available to customers online using the Continuity of Care Record standard. This is where the low hanging fruit is.     

There’s already a proven model for extracting and transforming data in many ways – HL7 feeds, non-HL7 feeds, web services, database replication, XML and XSLT, and more – and along the way wecan create value by interpreting the data and adding metadata.  Microsoft is doing it today– both in the enterprise with Amalga and and across enterprises to the consumer with HealthVault.    We hope other vendors follow this lead to drive better outcomes for patients. 

Unlike the physical world where there is a need for dejure standards—think railroad tracks—in the software world, there is much more flexibility and the standards that work are the ones that evolve from USAGE and market acceptance.    The certification and standards road equals conferences, press releases, “connectathons”, caregivers-turned-bureaucrats.  The outcomes road equals immediate benefits to actual caregivers AND learning we can apply to the next round, and the next, and the next.
 
We have given the industry decades to make this happen --- and just in the last 1-2 years have people finally gotten fed up and just started moving.  Our great risk here is that the people lobbying for dollars and certification today are the people who are invested in the old road.  With the amount of money we are talking about, we run the risk of just giving them another decade to delay and plan.   Instead, let’s put the dollars into rewarding behavior and outcomes, and let the people who live with the problems every day figure out how to solve them.
 
When we set out to go to the moon in the 1960’s we didn’t say “let’s build a great rocket.”   So, too, in this case we shouldn’t say “let’s buy a great IT system.”   Our measurements should be tied to what we want – better care, informed by the data that is just out there waiting for us to use it.

David C Kibbe MD MBA is a Family Physician and Senior Adviser to the American Academy of Family Physicians who consults on health care professional and consumer technologies.  Peter Neupert is Health Solutions Group Corporate Vice President at Microsoft.