I’ve never heard of “data liberation” before listening to Herb Quinde, Director, Public Sector, Microsoft Corporation. His comment to the audience at the 2014 OPEN MINDS Technology & Informatics Institute – “we need to stop integrating data and start liberating data” to have useful care coordination initiatives.
His basic premise was that most case management systems are “bad.” He described “bad” in a couple ways. First, most case management systems have too much data in text – and not enough in metrics. Secondly, we continue to have problems with varying data definitions – even for metrics-based data – that make sharing data for care coordination difficult at best.
These statements touched off some great discussion during the panel, Using A Data-Driven Approach To Coordinate Care – The Provider Organization Perspective, also featuring Tracy Thompson, IS Director, Kitsap Mental Health Services; Josh Longiaru, Information and Technology Director, United Services, Inc.; and Christine Holmes, LMHC, Director, Product Consulting, CoCENTRIX; and moderated by my colleague OPEN MINDS Senior Associate, Joseph P. Naughton-Travers. The panel discussed a proliferation of data in health care that is causing more and more silos that get in the way of consistent coordinated care. As Ms. Holmes stated, “We are seeing a lot of data out there that just doesn’t have a match to other data. It’s that step to standardize all of those things.”
What was Mr. Quinde’s solution? He’s advocating for a national health identification (ID) card, a “health care rap sheet” that would have a basic, standard set of critical information about each citizen. This ID card would reduce the amount and type of data that is shared, but make the selected measures “ubiquitous” to every health care interaction. He described this concept of “liberated data” in terms of a driver’s license issued by a Department of Motor Vehicles (DMV):
In IT, the challenge is to actually identify you, because of different systems, and duplicates. A master person index is about pulling data to find the same person. When you pull out your driver’s license, there is a certain and clear data set. It’s actually you. The whole concept of liberating data is about deciding which data is critical for wellness decision support. You need a system like the DMV that is a reduce set of data.
The panel discussed the concerns of managers of provider organizations have about participating in broader systems that standardize and “liberate” data. The privacy concerns are significant, but there was agreement that this type of initiative would be focused on population health management, which is inherently different than the information required for individual treatment planning. Ms. Thompson pointed out that the Veterans Administration system is a great of example of this approach. “It has to be larger than a community and larger than a state,” she said. “A standard repository freaks people out, but if you’re 12 states away and someone makes a major medical error, you think, they should have known better. At a minimum, we need an alert system that says something is going on, and there is someone you can contact.”
For more on health ID cards, check out Workgroup for Electronic Data Interchange (WEDI) and their publication – Secure Patient Identification Feasibility of a Security Role for Subscriber ID Cards. And, after this session, I did my own research on “data liberation.” For more on Microsoft’s work in this area, check out Children’s Medical Center Dallas Enables True Data Liberation for Patients, by Lee Stevens, Policy Director, State HIE Program of HealthIT Buzz. In addition, Google has created the Google Data Liberation Front – an engineering team at Google whose “goal is to make it easier for users to move their data in and out of Google products”, and to ensure that data can be migrated from Google once an individual or company stops using their services. To read more on Google’s vision of “data liberation”, check out Introducing DataLiberation.org: Liberate your data!, by Brian Fitzpatrick, Google’s Data Liberation engineering manager. And, for another opinion, check out the piece by James Fallow in The Atlantic, The Promise and Limits of Google’s “Data Liberation Front.
What do you think about the health ID card notion? My preference for privacy from government authorities makes me nervous, but since we have no digital privacy anyway (one woman’s opinion), does it make a difference? If you have any thoughts you would like to share, I’d love to hear from you at firstname.lastname@example.org.