A Health Data Cloud is Powerful Tool for Health Research

The current effort to bring electronic health record use to healthcare providers, presently funded by the HITECH Act at a level of $27 billion will create hundreds of thousands of silos, one for each provider organization.  Some similarities and substantial compatibility will be seen by those who share one of the hundreds of possible electronic health record systems.  Each of these silos will use their own standards, as long as they have the standard functionality to meet requirements set by the Office of the National Coordinator (ONC) of Health Information Technology in the Meaningful Use Stage 1 through Stage 3 specifications.  One of these requirements will be to provide interoperability with the Nationwide Health Information Network (NwHIN) specifically for providing “Transition of Care” functionality.  Efforts will also be made to create requirements that increase the ability to do research on the healthcare information across the silos.

This strategy is likely to enhance the sharing of information among providers, but not without large challenges.  Certainly research will also be enhanced once data sharing agreements can be established for use of the healthcare information in the network, and more importantly, once language standards are established so, for instance, an MI in one system is understood as a Myocardial Infarction in all systems.  Implementation of language standards has not even been discussed by the ONC’s Health Standards Committee except to say, with the urging of Chris Chute, a leading proponent of this standardization effort, that a language will be a component of the requirements of Meaningful Use.

The President’s Council of Advisers for Science and Technology (PCAST) in their Health IT Report titled “Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward” released in December 2010, recommended a novel approach to health information exchange which would require metadata tagging of atomic data elements that they called a Universal Exchange Language.  The Biomedical Informatics Think Tank(tm)(BITT(tm)) interprets this approach as a Health Data Cloud where all healthcare providers and individuals can store their health information.  Key to this proposal is that only those individuals, providers and researchers authorized to see this information can aggregate it for their use.  The Health Data Cloud could enforce the use of standards since when information is put into the cloud, it the information could be checked to ensure that it meets standard requirements.  Such a New Exchange Architecture would make access to the health information less costly and more able to provide results that could allow an effective implementation of comparative effectiveness research and personalized medicine.  Furthermore critical public health information could be easily monitored for disease outbreaks.  This access could be provided while maintaining the privacy of individual health information.

The BITT has a demonstration of just such technology, which it plans to license as open source.  Some of the interesting characteristics of this technology include:

1. Individual identifiers can not be downloaded from the system in association with any data (i.e. no identifiers are available external to the code of the system).
2. Access is provided to proxies, providers or researchers through online authorization (consenting) mechanisms (and thus, individual identifiers are not necessary).
3. Researchers can do research on any of the information as long as the results they see are only aggregates.
4. Researchers can only see individual deidentified data (and never identified data) for research purposes only if the providing individual (or their proxy) has given consent for that purpose.
5. Researchers can notify an individual’s care provider about a healthcare opportunity resulting from a research effort (such as an opportunity to participate in a clinical trial or to follow a particular regime or get a particular procedure done) only through an notification service that keeps the patient identification information unknown to the researcher.

Stay tuned for the latest updates about this proposal for a Health Data Cloud.  If you would like to have a copy of the code, please contact me and we will provide you with this as soon as we can make it available because we want your help in the development of this code as open source.

The Biomedical Informatics Think Tank(tm) and BITT(tm) are trademarks of T.P. Caruso & Associates, LLC.