Health record trust

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This section inaccurately defines a health record trust and makes reference to an inaccurate Castro document.
A health record trust can follow a federated model. The trust need not be a repository of health data. The technology of a trust may be governed by a policy framework, such a HR 2991 (below), which does not specify establishment of any technology, centralized or federated. Under HR 2991, a federated model is entirely possible. In fact, its most technical wording is "nationwide health information technology network" and in the rest of the document establishes that such a network would consist of independent trusts.

Such a concept is fully consistent with policy frameworks by organizations such as the Markle Foundation markle.org whereby the trust functions as the indexing mechanism referred to in Markle's "Connecting for Health" framework. The point is, a trust defines a relationship, and need not (should not) contain health data.

There is a problem with the Castro document reference: it states the HR 2991 would "establish federally regulated health record data banks". The bill does not establish data banks. The rest of the Castro description is okay. HR 2991 simply establishes policy regarding the access of trust data. Following its guidelines, the trusts, when implemented consistent with the indexing mechanisms of Connecting for Health framework, could incorporate a federated security framework, with related indexing. HR 2991 enable choice of trusts by participants (individuals or providers), and all participation is voluntary.

A health record trust (also independent health record trust or health record data bank) is a proposed hybrid model for electronic health records (EHRs). Unlike the federated model where the data for electronic health records are stored in multiple databases, in this model, each patients entire EHR is stored in a single repository. Also, unlike the centralized model where all patients must store their health records with a single provider, in this model patients choose the health record trust they prefer, much like consumers choose a bank of their choice.^[1]

This proposal was introduced in 2006 by Sen. Sam Brownback (R-KS) and most recently by Rep. Dennis Moore (D-KS) and Rep. Paul Ryan (R-WI) in the Independent Health Record Trust Act (H.R. 2991).

H.R. 2991 would establish federal guidelines to regulate health record data trusts. It would give patients explicit ownership over their records stored in a health record trust. Finally, it would establish a fiduciary responsibility for the health record trust to protect the privacy of its customer's personal health information.