On January 31st of this year the Office of the National Coordinator released the first draft of the Nationwide Interoperability Roadmap. I believe one of the most important ideas in this document was what has been termed “long data”.

The National Coordinator for Health Information Technology, Karen DeSalvo, MD, framed the effort to achieve interoperability as requiring “…a set of standards that allow more seamless, yet appropriate, sharing of electronic health information for ‘small’ (individual patient), ‘big’ (population level and beyond) and ‘long’ data (wrapping around the individual and telling their health story over time).”

I think Karen got it right regarding “long” data, but I believe nobody’s really explored her ideas adequately. To prove my point, open your web browser and search for healthcare + “long data” on Google.

Go ahead, do it… I’ll wait.

And if you did actually manage to find a conversation about “long data” please drop me a note and let me know. I certainly couldn’t find one.

So, why is there no discussion of this topic? In short, because it’s a hard question. After all, who owns the complete medical history of a patient?

Well-deployed Health Information Exchanges are perhaps the best source of truth today, but they have only typically captured data from the point of going live with a facility. If a patient stays in their same hometown for their whole life, and their pediatrician and then PCP are owned physicians of the hospital, and the hospital in their hometown covers most specialty care, then maybe the EMR has their “long” record. 

How many patients fall into this category? Some for sure, but not many. Hence the focus on HIE’s in the first place.

What do clinicians do in the absence of the long record? They ask the patient about their history, and maybe the patient remembers. I personally keep good records. Due to family history I have had to have a colonoscopy while in my 20s. Do I have a record of it? Nope. Do I know when it took place? Sorry. Can we ask patients going through a diagnosis of cancer to do better than any of us?

What are the risks of not having the long record? Repeat testing, medical errors, and longer time to receive care. It is worth our time and effort to work on this problem. We need more conversation, innovation, and action around this.

So what is the shortest path to long data? In my view, current interoperability efforts are necessary but not sufficient. At eHealth Technologies, we work hard to get the “long” record for patients to are referred for advanced care, such as for cancer and transplant. We love getting discrete, interoperable data when we can.  But we have to supplement this with getting records the “old fashioned” way – going out to the many healthcare providers for a patient and have them fax or send to us.

It takes over 80 people in our service center to get this critical information. Then, it is our job to check that data for accuracy and quality, and aggregate it with the other interoperability data, to create a usable “long” record for the patient.

This is hard and tedious work, but it’s currently the shortest path to a relevant historical (“long”) record for our patients.

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