RHIOs and Health Information Exchange: A Call for Independent Scientific Research

Since publication of my commentary on Lenert, L., Sundwall, D., Lenert, M.E.,  Shifts in the Architecture of the Nationwide Health Information Network, Journal of the American Medical Informatics Association, Online First, January 21, 2012 - I have pursued correspondence with the authors of the "Perspectives" article cited above as well as with the editorial team of JAMIA.  Unfortunately, there has been no satisfactory response to  my concerns.  In light of this lack of editorial response, it appears that the misinterpretation of research studies in the article literature review is considered trivial - although in fact it is critical to support the authors' proposition that RHIOs offer a sustainable infrastructure for health information exchange in the United States.  This case in publication ethics raises some interesting issues.

In particular, the JAMIA editorial team seems to discourage any post -publication debate regarding papers appearing in the journal, even when legitimate concerns are raised by readers.  Most scholarly journals have policies governing the correction of errors identified in accepted publications. (For example, see  the Royal Society policies  - available at:   http://royalsocietypublishing.org/site/authors/policy.xhtml ) Organizations specialized in publication ethics such as the Committee on Publication Ethics (COPE : http://publicationethics.org - of which JAMIA is a member) and the World Association of Medical Editors (WAME: http://www.wame.org/ ) require that their members develop such policies.

The BMJ and other journals published in the BMJ system seem to encourage online post publication debate using the electronic function designed for that purpose. I would suggest that the editorial team of JAMIA follow their example. (See Richard Smith's interesting commentary on BMJ Group Blogs at http://blogs.bmj.com/bmj/2011/04/06/richard-smith-what-is-post-publication-peer-review/  .)

I first wrote an electronic response to this article – and  received an automated acknowledgement from JAMIA on April 7.  The text of my letter appears on my blog at http://eresearchcollaboratory.blogspot.ca/2012/04/commentary-lenert-l-sundwall-d-lenert.html - as well as the SCIVEE site where a recorded webinar of the JAMIA Journal Club is available: http://www.scivee.tv/node/46861

This article was subsequently republished in the July issue of JAMIA - without any corrections -  in  volume 19(4) pp. 498-502. A letter to the Editor has remained unpublished and without editorial response. One author's response to my comments was rather defensive in tone, while  members of the editorial team did not consider it their duty to address my concerns.  They seem to agree that articles accepted for publication in JAMIA should be considered beyond any further question or debate.  This attitude is unworthy of a scholarly journal, particularly in an interdisciplinary knowledge domain such as biomedical informatics. (See my response to the editor of CACM: http://cacm.acm.org/magazines/2012/7/151235-predatory-scholarly-publishing/fulltext )

My unanswered email communication with the editor is copied below:

This is just to let you know that I have submitted a response  to the JAMIA article: Shifts in the Architecture of the Nationwide Health Information Network, Journal of the American Medical Informatics Association, Online First, January 21, 2012.

One author has answered my review,  as copied below.  He seems particularly offended by my comments regarding his reporting of research by Adler-Milstein et al. in 2008 and 2011 to support the census of RHIOs in those years (100 and 200 active organizations-respectively).  My intention is certainly not to be rude, but to point out that it is essential to have carefully read research cited in published studies - particularly in interdisciplinary study.  I am surprised and disappointed that  neither the article authors nor the JAMIA reviewers of this manuscript appear to have read Adler-Milstein's research.  I have noted that JAMIA rarely encourages any electronic dialogue on published articles, but in my opinion, thoughtful comments should always have a place in public policy debate.

Many thanks for your kind consideration...

_________________________________

One author's response:

 

Ann

This article has triggered a great deal of discussion. Our article went through 3 rounds of peer review at jamia with more than150 specific comments by reviewers, some quite hostile. Before you accuse them of error and me of mis representation, you better have a good argument. The fact the RHIOs, conceived before meaningful use, and not well funded through HITECH don't meet the requirements is not surprising. I think you should perhaps consider whether the strength of evidence for MU in your arguments. I think the evidence for RHIOs impact, flawed as it is, is far better than for MU regulations. These comments are simply rude and have not place in academic discussion.

I agree with your thoughts about organization theory and governance needing more attention.

Rather than critique the absence of work from your field, why not tell us what it has to say? The business model for RHIOs and for national exchange should be that of a public utility. I would be interested to learn about organizational theory relevant to that model. I agree that the governance of voluntary participation RHIOs is difficult. 

Commentary: Lenert, L., Sundwall, D., Lenert, M.E., Shifts in the Architecture of the Nationwide Health Information Network, Journal of the American Medical Informatics Association, Online First, January 21, 2012.

Lenert, L., Sundwall, D., Lenert, M.E.,  Shifts in the Architecture of the Nationwide Health Information Network, Journal of the American Medical Informatics Association, Online First, January 21, 2012.

Abstract: In the midst of a US $30 billion USD investment in the Nationwide Health Information Network (NwHIN) and electronic health records systems, a significant change in the architecture of the NwHIN is taking place. Prior to 2010, the focus of information exchange in the NwHIN was the Regional Health Information Organization (RHIO). Since 2010, the Office of the National Coordinator (ONC) has been sponsoring policies that promote an internet-like architecture that encourages point to-point information exchange and private health information exchange networks. The net effect of these activities is to undercut the limited business model for RHIOs, decreasing the likelihood of their success, while making the NwHIN dependent on nascent technologies for community level functions such as record locator services. These changes may impact the health of patients and communities. Independent, scientifically focused debate is needed on the wisdom of ONC's proposed changes in its strategy for the NwHIN.

This article contributes to the growing policy literature on ONC strategies to promote health information exchange through infrastructures of the Nationwide Health Information Network.  While the authors  call for an “independent, scientifically focused debate … on the wisdom of ONC’s proposed changes in its strategy…”  there is little pertinent reference to research in organizational science or institutional economics to support such a debate.  The authors focus on Regional Health Information Organizations  (RHIOs) defined most often as not-for-profit organizations providing universal services for health information exchange in the interest of the communities they serve and more generally, the public good.  The market-driven strategy for the NHIN assumes that RHIOs will develop in local communities and will interconnect to scale up to a nationwide infrastructure.  Unfortunately this politically expedient assumption is inconsistent with the nature of competitive markets.  Furthermore, since the benefits of health information exchange accrue to the broader health care system rather than entities investing in RHIO membership, no business model has been identified to support RHIOs with sustainable revenue streams independent of federal and state funding. 

Organizational research to date has documented the substantial federal and state investments in health information exchange – including variously defined RHIOs, health information exchange organizations (HIEs), and State Designated Entities (SDEs).  The authors of the present article cite publications by Adler-Milstein et al. to suggest the progress of policies for RHIOs and health information exchange.  Attentive reading of these articles reveals that the numbers of “active organizations” identified is subject to interpretation.  Based on Adler-Milstein et al. (2008),  Lenert et al. report « more than 100 active organizations » while 45 of these were in the planning stages and only 20 qualified to be included in the study sample.  In 2011 Lenert et al. contend that the number of RHIOs had grown to more than 200 based on research by Adler-Milstein et al. (2011).  In fact this number included SDEs as well as RHIOs, and analysis revealed that none of these organizations met criteria for a « comprehensive RHIO » in light of meaningful use requirements.

These misleading citations reflect an apparent bias in favor of RHIOs – entities threatened (according to Lenert et al.) by a shift to promote private networks and an Internet-like model for building the NHIN. A similar lack of careful reference to scientific research in organization science appears in other recent articles in health care policy published in Health Affairs (See Williams et al., 2012,  From the Office of the National Coordinator:  The Strategy for Advancing the Exchange of Health Information, Health Affairs, 23 ( 3)  (2012) pp. 527-536.)   as well as JAMIA (See Kuperman, G.J. 2011, Health-information exchange: why are we doing it, and what are we doing?,  Journal of the American Medical Informatics Association, 18(5), 678-682. From the perspective of this reviewer, there is no evidence base to conclude that policies for RHIOs (or other entities dedicated to health information exchange) are undermined by new initiatives, particularly where public investment to sustain RHIOs is unavailable.  RHIOs also pose very significant challenges with the addition of new organizational layers for governance and accountability to numerous stakeholders.

Lenert et al.  correctly suggest that the successful development of the NHIN requires both nonpartisan consensus  in public policy and independent scientific research to evaluate the effectiveness of alternative models.  Unfortunately the highly charged political environment of an election year in the U.S. will favor neither.

REFERENCES
Adler-Milstein, J., McAfee, A.P., Bates, D.W., et al., The State of regional health information organizations: current activities and financing. Health Aff (Millwood) 2008;27:w60–9.(REF. 22)
Adler-Milstein, J., Bates, D.W., Jha, A.K.,  A survey of health information exchange organizations in the United States: implications for meaningful use. Ann Intern Med 2011;154:66–71.(REF. 23)
 
(Reviewers of this manuscript for JAMIA should have corrected errors in the reading of studies cited.)

From the Office of the National Coordinator: The Strategy for Advancing the Exchange of Health Information, HEALTH AFFAIRS, Vol. 23, No. 3 (2012) pp. 527-536.

From the Office of the National Coordinator:  The Strategy for Advancing the Exchange of Health Information, HEALTH AFFAIRS, Vol. 23, No. 3  (2012) pp. 527-536.

This important article from the Office of the National Coordinator for Health Information Technology (ONC) identifies the critical role of health information exchange in the achievement and measurement of meaningful use of electronic health records.  Infrastructures for health information exchange are prerequisite to measurement of the criteria for meaningful use, but the development of such a system on a national scale in the U.S. remains a work in progress, threatened by the vicissitudes of a fragmented political process. The authors of the article describe three types of exchange: 1- “sending and receiving health information to support coordinated care,” 2- “finding patient health information for unplanned care,” and 3-“enabling patients to aggregate their own health information.”  Each of these modes of exchange poses unique technical challenges, but all are necessary for meaningful communication of health information across the Nationwide Health Information Network (NHIN).

At issue is the design and implementation of the required supporting infrastructure.  As recognized by the authors, strategies for development of  Regional Health Information Organizations (RHIOs) have provided initial public funding under the assumption that such organizations could develop sustainable business models and eventually interconnect for health information exchange on a national scale.  Unfortunately sustainable business models for RHIOs have not emerged, while many other apparently more viable initiatives are being developed by large hospital systems, electronic health records vendors, and newly formed ACOs.  Amidst this organizational diversity, problems remain in promoting  interoperability and information exchange among competing systems.

Some recent research suggests that RHIOs and other publicly funded health information exchange organizations may be inadequate to satisfy the criteria set forth for meaningful use. (See Adler-Milstein et al. 2011,  A Survey of Health Information Exchange Organizations in the United States: Implications for Meaningful Use, Annals of Internal Medicine, 154(10) 666-671 available at http://www.annals.org/content/154/10/666.abstract )

Adler-Milstein et al. elaborated the definition of a “comprehensive RHIO” in light of the HIE requirements for meaningful use of electronic health records (EHRs).  This definition was developed by a panel of 9 national health policy experts using a Delphi methodology to arrive at consensus.  Analysis revealed that none of the RHIOs included in the sample satisfied the meaningful use criteria.   This finding portends the possible failure of the market driven “network of networks” approach to development of the NHIN. (See further comment on my blog at http://eresearchcollaboratory.blogspot.ca/2011/11/health-information-exchange.html )

In the present article, only one reference supports the statement that “the number of active private health information exchange entities tripled from 52 in 2009 to 161 in 2010.” (page 528) No definition of the “active private health information exchange entity” is offered, nor is there any description of the research methodology used to identify such entities. (The proprietary consulting report is available at https://www.klasresearch.com/store/ReportDetail.aspx?ProductID=642  )

The paucity of scientific organizational research to orient the design and governance of health information exchange and the NHIN is surprising in a community so engaged in promoting evidence-based medical practice and policy-making. Perhaps the interdisciplinary nature of the research enterprise (well beyond the comfort zone of most medical researchers dedicated to standards of the randomized controlled trial) obscures thinking in terms of large social systems.  Systems thinking, however, defines the broader context of the individual EHR and health information exchange. Without attention to the “big picture”, faulty assumptions within diverse disciplinary silos will guide ONC policies described in this article to costly and certain failure.