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The Foundation for the eHealth Initiative, Washington, has published an online tool kit for developers of health information exchanges, or HIEs, that is the culmination of four years of federally supported work on healthcare information technology and data sharing.

The foundation's new Value and Sustainability Model takes aim at what exchange organizers commonly say is their toughest problem: developing a business plan that will carry the organization through to sustainability after its startup funding—typically government grants—runs out.

Janet Marchibroda, chief executive officer of the Foundation for the eHealth Initiative, said in a news release that developing a sustainable business model "is one of the greatest HIE challenges." Marchibroda said the new Value and Sustainability Model "offers a solution that is based squarely on the lessons of those who have gone before, customized to each community's needs. It is a true breakthrough that comes at a critical time."

Many of those lessons were provided by the real-life financial experiences of three regional health information organizations: the Indiana Health Information Exchange in Indianapolis, HealthBridge in Cincinnati, and Taconic Health Information Network and Community in Fishkill, N.Y.

The model takes the HIE planner through five steps:

Assess stakeholder needs.
Define alternative pathways to success. Evaluate those pathways and quantify the business case returns for each stakeholder. Plan the best pathways with sound pro forma income statements. Execute the plans with a provision for periodic monitoring. According to a spokesman at the Health Resources and Services Administration at HHS, the foundation has received slightly more than $6.8 million in HRSA grants to promote health information exchange.

The model provides exchange developers with online tools to assess a community's readiness to develop an HIE and the attendant risks. It also helps planners develop a business case and pro forma financial statements. Finally, the tool kit includes a template for use by exchange planners in the development of an overall business plan for the HIE.

The Value and Sustainability Model is available without charge, although registration is required to access and download many of its components. It is part of a broader online guide for developing HIEs called the Connecting Communities Toolkit.

According to survey work done by the foundation and its related not-for-profit organization, the eHealth Initiative, funding is the greatest challenge for all HIE efforts, with 91% of survey respondents citing that securing upfront funding was either a "very difficult" or "moderately difficult" challenge, while nearly half (48%) of respondents from advanced exchanges reported needing federal government grants for ongoing operations.

In addition to widespread money problems, HIEs, according to the survey, also have other organizational worries, including a basic problem, the lack of agreement between participants to share their data. Other issues reported were disagreements on data-sharing standards, on how to identify patients across providers and on how to handle privacy and security issues.

According to a Connecting Communities Toolkit module on "Policies for Information Sharing," the issue of simply who to let into the data-sharing exchange "brings up major questions." For example, it says, "in the broader scheme of things, the clinical data held and processed electronically for claims purposes by health plans and their agents (e.g., pharmacy benefit managers, or PBMs) could be very useful in clinical situations where the original data is unavailable electronically."

But, "If the HIE project allows health plans to share such data, are they also allowed to search for other clinical data on their beneficiaries, and for what purposes? In addition to the practical issue about whether other clinical data sources will agree to be part of the system under such circumstances, particular privacy and security issues arise. How are patients notified of the potential disclosure of their information to their payers? How will patients be given control over such disclosures or must they opt out of the whole system? How does one define and control the purpose for which information is being sought? How are the roles of authorized users defined and controlled, and to what information can they have access under what circumstances?"

Finally, the Connecting Communities Toolkit notes that "the cultural context of the HIE effort can make a difference."

"In some regions," it says, "an HIE can declare a policy that all clinical information will be available for sharing, with appropriate controls and constraints, and that patients may not opt out (they must go elsewhere for their healthcare if they don't want to participate). In other regions, the local culture would require more patient control and ability to opt out of participation in the data-sharing system so the implementation would have to accommodate that ability. How do you get community consensus on a particular approach?”