Research Shows that Problems with Health Information Exchange Resist Cures (Part 2 of 2)

Posted on March 23, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous section of this paper introduced problems found in HIE by two reports: one from the Office of the National Coordinator and another from experts at the Oregon Health & Science University. Tracing the causes of these problems is necessarily somewhat speculative, but the research helps to confirm impressions I have built up over the years.

The ONC noted that developing HIE is very resource intensive, and not yet sustainable. (p. 6) I attribute these problems to the persistence of the old-fashioned, heavyweight model of bureaucratic, geographically limited organizations hooking together clinicians. (If you go to another state, better carry your medical records with you.) Evidence of their continued drag on the field appeared in the report:

Grantees found providers did not want to login to “yet another system” to access data, for example; if information was not easily accessible, providers were not willing to divert time and attention from patients. Similarly, if the system was not user friendly and easy to navigate, or if it did not effectively integrate data into existing patient records, providers abandoned attempts to obtain data through the system. (pp. 76-77)

The Oregon researchers in the AHRQ webinar also confirmed that logging in tended to be a hassle.

Hidden costs further jacked up the burden of participation (p. 72). But even though HIEs already suck up unsustainable amounts of money for little benefit, “Informants noted that it will take many years and significantly more funding and resources to fully establish HIE.” (p. 62) “The paradox of HIE activities is that they need participants but will struggle for participants until the activities demonstrate value. More evidence and examples of HIE producing value are needed to motivate continued stakeholder commitment and investment.” (p. 65)

The adoption of the Direct protocol apparently hasn’t fixed these ongoing problems; hopefully FHIR will. The ONC hopes that, “Open standards, interfaces, and protocols may help, as well as payment structures rewarding HIE.” (p. 7) Use of Direct did increase exchange (p. 56), and directory services are also important (pp. 59-60). But “Direct is used mostly for ADT notifications and similar transitional documents.” (p. 35)

One odd complaint was, “While requirements to meet Direct standards were useful for some, those standards detracted attention from the development of query-based exchange, which would have been more useful.” (p. 77) I consider this observation to be a red herring, because Direct is simply a protocol, and the choice to use it for “push” versus “pull” exchanges is a matter of policy.

But even with better protocols, we’ll still need to fix the mismatch of the data being exchanged: “…the majority of products and provider processes do not support LOINC and SNOMED CT. Instead, providers tended to use local codes, and the process of mapping these local codes to LOINC and SNOMED CT codes was beyond the capacity of most providers and their IT departments.” (p. 77) This shows that the move to FHIR won’t necessarily improve semantic interoperability, unless FHIR requires the use of standard codes.

Trust among providers remains a problem (p. 69) as does data quality (pp. 70-71). But some informants put attitude about all: “Grantees questioned whether HIE developers and HIE participants are truly ready for interoperability.” (p. 71)

It’s bad enough that core health care providers–hospitals and clinics–make little use of HIE. But a wide range of other institutions who desperately need HIE have even less of it. “Providers not eligible for MU incentives consistently lag in HIE connectivity. These setting include behavioral health, substance abuse, long-term care, home health, public health, school-based settings, corrections departments, and emergency medical services.” (p. 75) The AHRQ webinar found very limited use of HIE for facilities outside the Meaningful Use mandate, such as nursing homes (Long Term and Post Acute Care, or LTPAC). Health information exchange was used 10% to 40% of the time in those settings.

The ONC report includes numerous recommendations for continuing the growth of health information exchange. Most of these are tweaks to bureaucratic institutions responsible for promoting HIE. These are accompanied by the usual exhortations to pay for value and improve interoperability.

But six years into the implementation of HITECH–and after the huge success of its initial goal of installing electronic records, which should have served as the basis for HIE–one gets the impression that the current industries are not able to take to the dance floor together. First, ways of collecting and sharing data are based on a 1980s model of health care. And even by that standard, none of the players in the space–vendors, clinicians, and HIE organizations–are thinking systematically.