Another is the “Perspective” article by Ken Mandl and Issac Kohane, both of Children’s Hospital Informatics Program (CHIP) in Boston.  These two were leaders of the core team that developed the Open Source platform, IndivoHealth which became the foundation for employer health cloud Dossia, and arguably, their core philosophy for Indivo is reflected in the core tenets of both Google Health and HealthVault: Personal health data belongs to the consumer and the consumer should decide how it is shared. This is a very radical concpet that still has most providers, payers and other data holders shaking in their boots.

In their article, Mandl and Kohane argue that for the HITECH Act to be successful, execution by HHS needs to focus on supporting those actions that will create secure data liquidity and ready substitutability of applications.  To accomplish such, not surprisingly platforms are their core expertise, these authors wish to see HHS support the development of a platform that supports “communication and computation” of healthcare data.

While noble goals, which we support, are outlined in their paper, these goals are quite obviously derived from those who work in an academic setting and not in business.  Unfortunately, their arguments do not account for the current business structure of the HIT industry or for that matter the motivations, or lack thereof for data liquidity among healthcare industry stakeholders. This is one of the core reasons RHIOs have never really gone anywhere.

Probably the most egregious data liquidity example is right here in Boston where the Partner’s IDN does not share digital data/patient records with their competitors literally across the street at Beth Israel Deaconess Medical Center (BIDMC).  What is so surprising/egregious here is that BIDMC’s CIO, John Halamka, is the head of HITSP and Partner’s CIO John Glaser, formerly of AHIC is now headed to ONC to oversee execution of HITECH Act. If these two can’t achieve data liquidity between their two institutions, within such close proximity, can others?  Unlikely, or not until we see a minor nuclear explosion in the healthcare sector where consumers become directly engaged in managing their health and demand that their records flow into a third-party repository where they can directly control the flow of their health data.

Which leads to the final paper in NEJM and the title of this post…

Doctors Paul Tang of Palo Alto Medical Foundation and Thomas Lee, head of Partners argue in their “Perspective” article that tethered, physician-hosted PHRs will be the true successors in the market as these solutions will provide the greatest value to end consumers.

Whoa, what are these guys smoking?

Yes, at this early juncture in the rapidly evolving PHR market, physician sponsored PHRs are seeing, in isolated incidents, very strong adoption.  Kaiser-Permanente has done a great job driving adoption by a continuous improvement process of core PHR functionality that consumers desire.  As great as KP’s tethered PHR is, and the uniqueness of KP in the healthcare market (fully, vertically integrated) it does not address the full continuum of care that a consumer may be engaged in.  No tethered PHR does. Thus, the need for independent and untethered repositories such as Google Health, HealthVault and maybe even Dossia, that allow for multiple data types and sources to be aggregated on behalf and by consent of the consumer is necessary.  This is where the market is heading and not the siloed PHRs that have been the norm, whether sponsored by payers, employers or in Tang’s and Lee’s case, providers. Their argument is just so… turn of the century.

KP, Aetna, United Health Group and others do see the writing on the wall and to their credit, are now working with Microsoft’s HealthVault group to allow a consumer to export their respective PHR records to HealthVault. Cleveland Clinic and BIDMC also support the third-party repository model with Google Health. These are the leaders, the trend-setters and obviously not Palo Alto Medical Foundation or Partners, which really is a shame.

Probably the most galling aspects of their short article though were the following statements:

In the absence of widely adopted data standards for interoperability, however, even these large corporate entities are finding it challenging to import and combine the information in ways that preserve its meaning. Furthermore, the large repository companies have yet to exchange data with one another.

and

From a consumer’s perspective, the lack of federal privacy protection for confidential health information stored by entities that are not covered by the Health Insurance Portability and Accountability Act (HIPAA), such as commercial PHRs and repositories, remains problematic.

Regarding the first quote, yes, the lack of widely adopted data standards to support interoperability affects everyone. Heck, even physicians can’t even share data today amongst themselves across practices and outside of a defined IDN, so why do the authors take a whack at Google and Microsoft.  People in glass houses should not throw stones.

On the second one, the well-worn “Privacy boogeyman” is put out there.  Honestly folks, Microsoft and Google have far more to loose if inappropriate use occurs compared to virtually any provider organization. Thus, you are much better off having your data with these third party entities than in a hospital or local physician practice’s EMR where data security is highly questionable.

While Chilmark Research does share the authors’ belief that there is tremendous value in consumer-physician sharing of health data to promote care, we take strong exception to their argument that a physician sponsored PHR is the way to go.  Simply put, physician sponsored PHRs are completely siloed, rarely allow for consumer control and almost never support data liquidity.  For these reasons, they are but a flagstone in the path to consumer engagement in health and certainly not the end point.