Stating the Case

There are at least 27 states with health information exchange initiatives (HIEs) that involve some form of public-private collaboration, says a report from an arm of the American Health Information and Management Association (AHIMA).

A phenomenon that's more recent than the 200 or more local HIEs (often called RHIOs), the state efforts are so new and so different from each other it's difficult to describe their status, according to the AHIMA research, done under contract with the Department of Health and Human Services.

The state HIEs have come into being in a variety of ways, including by executive order or state legislation, state agency efforts or grass roots work. Only eight states have an HIE more than two years old, the research found. Of the five large states with HIEs — California, Florida, Michigan, New York and Pennsylvania — none have one more than two years old.

AHIMA Chief Executive Linda Kloss, MA, RHIA, presented the report, done in conjunction with the National Conference of State Legislatures, to a recent meeting of the American Health Information Community, the high-profile advisory panel behind the federal efforts to push electronic health record (EHR) adoption.

For most states with HIEs, the extent of data exchange is either unknown or still being planned, said the report. California, Colorado and Massachusetts were considered to have limited data exchange, such as one particular function (like medication history) or a limited number of participants. Only Indiana was considered to have extensive data exchange.

Even the more mature state HIEs are struggling with how to finance expansion, the document found. Although there are several models for revenue, the report said, "The level and type of financing that state government is willing or able to provide a state-level HIE initiative will have significant effect on long-term financing."

Possible ways HIEs could support themselves, the researchers suggested, would be:

• charging a membership fee;

• charging transaction fees — such as per clinical result delivered or a life covered;

• charging fees for licensed use for a software package;

• charging program or service fees; or

• charging for a combination of elements.

And beyond the financing, state HIEs are likely to face other barriers, the report noted, including:

• the lack of consensus on the role of state government;

• lack of coordination among state agencies;

• lack of participation from private payers;

• variation in stakeholders' interests;

• lack of shared experience with start-up projects; and

• lack for plans for relating to similar efforts in neighboring states or to the federal plans for a health information network.

The document stated that the work will need to consider the intricacies of data-sharing agreements and state laws, including those on patient consent.

On the other hand, there are good reasons for HIE efforts to be at the state-level, the document asserted. In addition to responsibilities for financing a large portion of healthcare, states have mandates for ensuring access and quality, particularly for underserved and vulnerable groups. They regulate many aspects of care and are in charge of the public health structure, with its responsibility for data collection, biosurveillance and containing disease outbreaks.

The report called for creation of an entity to coordinate work among states and between the states and the federal government and identification of financial models for state HIEs. It recommended analysis on the role of private payers, the best avenues for state policymakers and government involvement, and the best ways to support state HIEs, including information sharing.

A companion document, "State-Level Health Informational Exchange Initiative Development Workbook," is a collection of guiding principles, checklists and worksheets. That and the final report are at http://www.staterhio.org.