Covey was speaking about organizations broadly, Culver, specifically, about HealthInfoNet, the statewide health information exchange based in Portland, Maine, which he heads as executive director and CEO.
“These things do not work well if you do not have a foundation of trust,” Culver said. In fact, trust was the essential element that influenced the very architecture of the exchange, he said, enabling 31 participating hospitals (out of 39 in the state) and 60 group practices thus far to consent to having the medical records of their patients stored in one central data repository.
“Maine ended up in a central data repository model because of a trust relationship,” Culver said, one that was built up over the years since 2004 when healthcare leaders in the state first met and began talking about creating a state health information exchange.
The exchange formally incorporated in January 2006 and today has records from slightly more than 1 million people out of a total population in the state of 1.3 million, Culver said.
“We are organizing data around an individual,” Culver said, and as such, participants are unable to determine a competing provider's market share. “That helps sustain that trust relationship,” he said.
To address privacy concerns, Maine adopted the opt-out model, where by default, patient records from providers flow to and remain in the exchange unless patients choose not to participate. The consent management directive is created and stored by the exchange, not the providers, according to Culver. So far, 6,751 patients—or less than 1%—have opted out.
Data flow to the exchange from participating providers' EHRs—even those records of patients who have opted out—but a “rules engine” at the exchange separates participants' data from non-participants' and most data from non-participants are destroyed.
However, if a patient's record contains reportable information for public health purposes, it is identified by the rules engine and that data is transmitted to the Centers for Disease Control and Prevention under terms of data transfer agreement between the exchange and providers. Copies of data reported for public health purposes from patients who have opted out are kept by the organization, Culver said, but that data is not searchable by providers. Maine has 72 reportable diseases, Culver said. So far, the exchange can handle 30 of them.
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