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Archives for New Exchange Architecture

Health Record Banks as a Solution for a Self-Generated Health Information Exchange

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One of my Self-Generated Health Information Consortium Steering Committee members introduced me to the concept of a health record bank (HRB, though I have been thinking along these lines for awhile now as reflected in my “Transforming Health Research through Use of a Secure Health Data Cloud” presentation made in December 2011 in Saudi Arabia as part of my efforts to develop Quantal Semantics, Inc.).  My investigation of this concept led me to the Health Record Banking Alliance as well as HRB business model and HRB architecture white papers about this concept for health information exchange.  I followed up with Bill Yasnoff the founder of the HRB Alliance and he has been very generous with his time to explain HRBs as well as a specific business plan for moving forward with an HRB.  I’ve asked many questions and I’m hopeful that this maybe the sustainability solution for self-generated health information exchange as well as for provider-generated health information exchange.

Unlike current efforts at providing health information exchange, an HRB is a store of all of an individuals health information in one account.  Access to this information is controlled by the individual or their proxies (i.e. family members).  Information is uploaded to the individual’s HRB account each time an entry is made in a healthcare provider’s EHR about that individual.  This would include doctors notes, lab reports, etc. that update the information for the individual in those EHRs.  The first provider that uploads information and creates the HRB account for the individual, gives that individual an account number from the HRB.  The individual can then provide that account number to any of its healthcare providers, or on their online accounts of self-generated health information (i.e. from mobile health apps or health and wellness devices, etc.).  This information is then all aggregated in the individual’s account where they are able to annotate it and control the sharing of that information.

An HRB would allow the individual to see all their information in one place, and when that information is needed it is efficiently located without any requirement for aggregating the information, as would be needed by current approaches to health information exchange.  As a result, the HRB gives the individual better control over their health information, allowing the individual to not only control who sees any portion of their health information, but also the ability to annotate it and to monitor who actually accesses the information.  Furthermore applications could be developed that would allow individuals to notify themselves or loved ones when their information is accessed, and if the information is accessed in some emergency situation by a provider, those family members who want to know about such an emergency can more quickly respond without waiting for a call from the emergency provider as they do today.

Furthermore, individuals who are interested in supporting research into disease could share their information, and they could potentially obtain funds for sharing that information from the organizations who want to access the information for research purposes.  The possibility of generating income from one’s information will create a variety of business models that will promote the development of higher quality data and larger aggregates of data for improvements in research, and even better efforts to personalize medicine.

The challenge is to get the healthcare industry to support this effort, and Dr. Yasnoff has a solution for that as well.  He proposes to use the funds generated from research uses and other applications sold that use this HRB platform, to support the implementation of EHRs by physician practices.  A discussion I had last night with a physician practice management organization suggests that this would be a viable idea from their perspective.

Filed under Biomedical IT, New Exchange Architecture, SGHI
May 23, 2013

Regarding Metadata Standards to Support Nationwide Electronic Health Information Exchange

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Comments provided on RIN 0991–AB78: http://ow.ly/6vj4w

Regarding Metadata Standards to Support Nationwide Electronic Health Information Exchange

In this response, we do not address the specific questions posed in the metadata ruling proposal, but rather we argue that these metadata standards solve nothing while creating major security risks for patients.  The PCAST Report argues for tagged data elements for many important reasons:

The best way to manage and store data for advanced data-analytical techniques is to break data down into the smallest individual pieces that make sense to exchange or aggregate. These individual pieces are called “tagged data elements” (TDEs), because each unit of data is accompanied by a mandatory “metadata tag” that describes the attributes, provenance, and required security protections of the data. Universal exchange languages for metadata-tagged data, called “extensible markup languages” are widely and successfully used.

One important feature of such a universal exchange language (UEL) is that they can securely hide associations among the data, since the TDEs can be disassociated from other TDEs making them impossible to be aggregated again without adequate authorization which provides the tools for rebuilding the linkages among the TDEs which adds an additional level of security above and beyond that provided by encryption alone.  Putting metadata tags at the document level simply makes the information easier to find, but it also makes it easier to identify who the information describes since once the document is located, decryption alone gives full access to a set of information about the individual.  If the metadata is the actual patient identifier information, how can this data be maintained as deidentified?

Filed under Comments, New Exchange Architecture, ONC
Sep 15, 2011

Let’s Think Different

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I wonder whether the author of the Healthcare Technology News blog post called “Think Differently – the sequel” thinks that the ONC and their PCAST Workgroup is actually “Thinking Differently”?  Though it was a good summary of the PCAST HIT Report and the PCAST Workgroup Report released in mid-April, the blog suggested this was thinking differently.  Would Steve Jobs (Mr. Think Differently) say that they are thinking differently?  I think not.  Certainly PCAST thought differently when they published their treatise about health information exchange; however, the ONC and its delegates in the HIT Policy Committee are constrained by legacy thinking.  How do we best go from where we are now to there?  That’s legacy thinking and that’s what ONC is doing with the PCAST Health IT Report.

The Biomedical Informatics Think Tank™ thinks differently: that knowing where we are going does not require knowledge of where we are, but only what we want to be able to do with this new exchange architecture.  We are conceiving a technology that will create a Health Data Cloud (see my latest blogs: Why Build a Health Data Cloud and A Health Data Cloud is a Powerful Tool for Health Research), which will attain the objectives set out in the PCAST Health IT Report: Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The Path Forward:

  1. “Every American will have electronic health records and will have the ability to exercise privacy preferences for how those records are accessed, consistent with law and policy.
  2. Subject to privacy and security rules, a clinician will be able to view all patient data that is available and necessary for treatment. The data will be available across organizational boundaries.
  3. Subject to privacy and security rules, authorized researchers and public health officials will be able to leverage patient data in order to perform multi-patient, multi-entity analyses.”

The technology will be based in the latest thinking with a mathematical foundation for medical semantics, privacy and security in a cloud, social networks that empower individuals, and health ontology.  We start our thinking with what we want and think about the best way to meet those needs with technology that will serve us for a long time into the future.  That thinking is not constrained by current ideas about EHRs and time frames to get new technology standards implemented, a clear constraint of the Health IT Policy Committee’s PCAST Workgroup.  We will be part of a transformation health information exchange through our efforts, just as Apple has been part of the transformation of personal computing since the 70′s.  We think differently, and we invite you to think differently with us.

Here’s some different thinking: ONC should invest in a major effort, exceeding the scale of The Human Genome Project (HGP), to define a New Exchange Architecture with a Universal Exchange Language, and then they can actually build and manage the Health Data Cloud that will be required.  This is just as important as the HGP, and in fact, a continuation of the personalized medicine movement that is partially driven by the results of the HGP.  The HGP cost taxpayers $2.7 billion (HGP Frequently Asked Questions, Oct 2010) and much more was contributed by international government agencies from the UK and other countries, as well as by private and non-profit organizations towards this same goal.  HITECH put ten times this amount, $27 billion into motivating healthcare providers to move into the 21st century of health IT and electronic health record technology.  Only 10% of this funding could transform with a New Exchange Architecture.

Let’s think differently!

Filed under CER, New Exchange Architecture, ONC, PCORI, Think Tanks
Jun 30, 2011

Why Build a Health Data Cloud?

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According to Sharon Begley in a July 2011 Scientific American article titled “The Best Medicine”, Kaiser Permanente can do research studies of data from 8.6 million patients and the VA can do studies on 6 million patients.  Other health care provider organizations are coming together to do research, such as the consortium that includes Cleveland Clinic, Mayo Clinic and four other provider organizations with 10 million records.  A Health Data Cloud in which all health information is stored in one place, the Internet, for easy access by all health researchers, not just those at these particularly large institutions or consortiums, would not only have data from 24.6 million patients from Kaiser Permanente, the VA, and the Cleveland Clinic-Mayo Clinic consortium, it would have records from 100′s of millions of others.  Only in this context could clinical decision support systems be designed to really ask the question: What is the best treatment for each individual, unique patient.

To give this patient the best advice, his doctor needs to be able to know how others like this patient have been advised and how they have fared as a result.  Maximizing the number of patients that doctor can find who are like this particular patient, with similar blood pressure, blood test results, medical history, compliance likelihood (based on various environmental factors like education, values, etc.) and other similar attributes that effect health requires maximizing the number of patients to whom the provider can compare his patient.

Filed under Biomedical IT, CER, New Exchange Architecture, PCORI
Jun 27, 2011

A Health Data Cloud is Powerful Tool for Health Research

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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.

Filed under Biomedical IT, CER, New Exchange Architecture, ONC, Think Tanks
Jun 26, 2011

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