Interoperability and the Messiah...

In a recent NYT article ("Doctors Find Barriers to Sharing Digital Medical Records"), a frustrated physician said that "he hopes interoperability comes sooner rather than later", see article here: http://mobile.nytimes.com/2014/10/01/business/digital-medical-records-become-common-but-sharing-remains-challenging.html?smid=nytcore-ipad-share&smprod=nytcore-ipad&_r=0&referrer=

It seems as if interoperability is becoming the new Messiah that many people are hoping for... but let's face it: interoperability will not come any time soon! Why? Simply because the current law in most countries enforces healthcare providers to not only provide care, but also provide long term archiving services for the medical records they created when they took care of patients. That's what makes patients data fragmented and scattered across the various healthcare providers and other facilities patients have visited in their life. No data sharing or information exchange mechanism is going to solve this issue because it's not technological. Rather, it has to do with data flow dictated by the overall constellation of healthcare stakeholders and definition of medico-legal records residing solely  in the hands of healthcare providers.

The fact of the matter is that despite of huge efforts towards sharing and exchange of patient data carried out around the globe in the past decades, true interoperability that gets the complete health history of an individual at any point of care is still nonexistent!

Therefore, it's time to think outside the box:

>> It's time to revisit those presumably axioms that fixate data fragmentation and induce fragmentation of the entire healthcare sector.
>> It's time to change the current law and free healthcare providers from the archiving task that is not the essence of their role and specialty, i.e., providing care.
>>It's time to give rise to new entities in the health arena, which will be trusted by all current stakeholders but yet be independent of all of them.
>>It's time to give rise to trusted third parties (TTP) who will be the sole record keepers by a new law, with responsibility to sustain individual lifetime health records.
>>It's time to shift paradigms into a custodian model where multiple and certified custodians are trusted by all parties and only regulated by the new legislation.

This is a complex problem because data flow has been shaped so far by the current law. But despite the complexity, the solution is very simple, and its simplicity is the best indication of its inevitability. Let's act now!

For a short description of this vision, please see here: http://independenthealthrecordbanks.blogspot.co.il/search?updated-min=2010-01-01T00:00:00-08:00&updated-max=2011-01-01T00:00:00-08:00&max-results=1

Focus Theme on Health Record Banking is published in Methods

I've recently edited a Focus Theme on Health Record  Banking in the the Methods of Information in Medicine Journal. My editorial paper is titled "It’s Time for Health Record Banking!" Here is its abstract:

This Focus Theme aims at describing the Health Record Banking (HRB) paradigm, which offers an alternative constellation of health information exchange and integration through sustainability of health records over the lifetime of individuals by independent and trusted organizations. It also aims at describing various approaches to HRB and reporting on the state-of-the-art HRB through actual implementations and lessons learned, as described in articles of this Focus Theme.

For more details, see the journal site

Other papers in this Focus Theme include:

  Lessons Learned from a Health Record Bank Start-up

  The Lower Saxony Bank of Health 

  Health Data Cooperatives – Citizen Empowerment

Full text of the papers are available at the Methods issue page where the HRB Focus Theme was published

IHRB in a Nutshell
The Independent Health Record Banks (IHRB) vision suggests that medical records will not be kept anymore by healthcare providers; rather they will be sustained for the entire lifetime of an individual by new players in the healthcare industry- IHRBs - which will be (1) independent of healthcare providers / insurers / government-agencies / patients and (2) regulated by new legislation.

The fundamental principle of the new legislation is that the copy of a medical record stored in such an EHR bank is the only medico-legal copy. The record is sustained objectively by an EHR bank and all authorized parties can have access to it. Such a bank acts as a custodian/trustee. Multiple competing banks will be established by private enterprises (once the appropriate legislation will be in place), much like financial banks.

Healthcare providers could reduce their costs of medical records archiving as this function will be carried out by the EHR banks. Insurers will support it as it will improve the quality of care their customers get. Privacy will be better protected as no global patient identifiers will be needed since a bank account number will be the only access key that the individual needs.
And most importantly, true longitudinal EHRs will finally come out of the raw attested medical records by advanced information technologies employed by the EHR banks.

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Selected IHRB Publications:
* Shabo, A. (2014). It’s Time for Health Record Banking! Editorial of the HRB Focus Theme. Methods Inf Med, 46(5), 601-607.  
* Shabo, A. (2006). A Global Socio-Economic-Medico-Legal Model for the Sustainability of Longitudinal Electronic Health Records: Part 1 in Methods of Information in Medicine. 45(3): 240-245. Part 2 in Methods of Information in Medicine. 45(5): 498-505.
* Shabo, A. (2007). Independent Health Record Banks – Integrating Clinical and Genomic Data into Patient-Centric Longitudinal and Cross-Institutional Health Records. Personalized Medicine. November 2007, 4(4): 453-455.
* Shabo, A. (2010). Independent health record banks for older people – The ultimate integration of dispersed and disparate medical records. Informatics for Health and Social Care. September–December 2010, Vol. 35, No. 3–4, Pages 188-199.
* Shabo A. Meaningful use of patient-centric health records for healthcare transformation. IBM Journal of Research & Development. Vol. 56, No. 5 September / October 2012.

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My personal IHRB journey…
I’ve started toying with this idea around 1997 when I finished my postdoc research. During that research, I’ve specialized in cased-based reasoning and I thought it’s a cool methodology for clinical decision support because rule-based reasoning doesn’t really work in medicine. I then looked for ways to create medical case-bases with cases that are as rich & complete as possible. I realized that the fact that each provider is the record keeper of the records it created is a major hinder because the “case” as persisted by a provider is typically incomplete because other pieces of the patient’s medical ‘puzzle’ reside in other provider information systems.
I founded a start-up to create such a case base and provide a service for patient to look for similar cases to their own in an attempt to identify successful treatments and possibly providers who succeeded in providing those treatments. The start-up had a nice business plan (focused initially on aggregating annual check-up’s results) but it got rejected by venture capitalists in Israel. They all argued that due to anticipated lack of cooperation on the healthcare providers’ side – the business is not going to take off… I then realized that first there is a need for a change in the existing regulations and I turned to deal mainly with the ethical and legal aspects of IHRB rather than the business and technological ones. I focused on the characteristics of these new entities mainly with regard to their independency and the medico-legal status of the medical records IHRBs persist. When I joined IBM we started working with Watson Research Center on the Shaman project and I then started publishing my IHRB radical vision where the ethical independency is emphasized as well as the requirement for the medico-legal record to be archived only in IHRBs. The first publication was my presentation at the TEHR 2001 in London.

The most significant milestone was the introduction of a bill "Independent Health Record Banks" in the 110th US Congress. Even though this bill is not identical to my vision, it is still a step in this direction as the legislators were influenced from my publications.