Published Evidence: RHIOs and HIE

I have been searching for evidence about the performance of existing RHIOs, and have had some difficulty identifying published research - whether in journals or grey literature. An excerpt from the minutes of a meeting of CCHIT's working group on networks (October 28) refers to a study conducted by Gartner in late 2007. This report should be in the public domain as it was funded by the ONC. Gartner also refers to its research methodology as "proprietary"- contradicting the basic principles of scientific enterprise. (Hype Cycles and Magic Quadrants constitute questionable conceptual frameworks for this type of business intelligence.) While privately funded research results might logically be defined as proprietary, research methodology should always be considered open to review by the scientific and professional communities concerned.

The Healthcare IT Transition Group published reports in 2006 and 2007. While summaries of these reports (2006, 2007) are freely accessible, the full reports are still considered proprietary even though they contain "old news". Some discussion of the study results is available on the organization's blog. One other report on RHIO financing published in 2005 is available in PDF .

The eHealth Initiative has published annual surveys of HIE initiatives since 2005. The 2008 Fifth Annual Survey of Health Information Exchange at the State and Local Levels finds that although the number of organizations surveyed has increased, the extent of health information exchange remains limited and a sustainable business model has yet to be defined.

Chilmark Research, specialized in IT trends in the health care sector, projects a decline in formation of interorganizational RHIOs while HIE, designed for particular organizational entities, may constitute a growing market. The reasons for this are related to difficulties in identifying a viable business model for health information exchange. HIE is focussed on business partnerships much like a supply chain configuration in manufacturing, including suppliers and payers. While RHIOs enable health information "liquidity", HIE incorporates business processes associated with health information flows. According to Chilmark, public investment in RHIOs should be suspended, while the NHIN is an unrealistic goal based on HIE growth; the growth of HIE will not bring development of interoperable networks across the U.S..

An important issue in the distinction between RHIOs and HIE involves the risks of integrating billing and clinical information. For a variety of reasons, billing codes may distort medical conditions and treatments they represent, posing a danger to patient health as in the case of Dave deBronkart as reported in the Boston Globe (April 13 2009).

Another strategy for creation of the NHIN involves development and diffusion of open-source software solutions to allow public and private organizations to link into the NHIN for health information exchange. The U.S. Social Security Administration was the first federal agency to use this solution requiring the user entity to assume costs related to software development, implementation and maintenance.

Websites:
NHINWatch - maintained by the editors of Healthcare IT News
HIMSS Government Health IT
HHS: NHIN
Health Record Banking Alliance
Connect Community Portal - Open Source Gateway
HHS: Federal Health Architecture
Information and Technology Innovation Foundation
Practice Fusion a web-based EMR service and community of practice

Articles on topics related to RHIOs include:
Adler-Milstein, J., McAfee, A., Bates, D., & Jha, A. 2008. The state of regional health information organizations: Current activities and financing. Health Affairs, 27(1): w60-w69. (Comments on this article)
Adler-Milstein, J., Bates, D., & Jha, A. 2009. U.S. regional health information organizations: Progress and challenges. Health Affairs, 28(2): 483-492.
eHealth Initiative. 2008. Fifth annual survey of health information exchange at the state and local levels. Washington, D.C.: .
Marchibroda, J. M. 2007. Health information exchange policy and evaluation. Journal of Biomedical Informatics, 40(6, Supplement 1): S11-S16.
McDonald, C. 2009. Protecting patients in health information exchange: A defense of the HIPAA privacy rule. Health Affairs, 28(2): 447-449.
McMurry, J., Gilbert, C. A., Reis, B. Y., Chueh, H. C., Kohane, I. S., & Mandl, K. D. 2007. A self-scaling, distributed information architecture for public health, research, and clinical care. Journal of the American Medical Informatics Association, 14(4): 527-533.
Solomon, M. 2007. Regional health information organizations: A vehicle for transforming health care delivery? Journal of Medical Systems, 31(1): 35-47.
Thielst, C. B. 2007। Regional health information networks and the emerging organizational structures. Journal of Health Care Management, 52(3): 146-150.
Tripathi, M., Delano, D., Lund, B., & Rudolph, L. 2009. Engaging patients for health information exchange. Health Affairs, 28(2): 435-443.