As I work hard to enable a patient to express the privacy rules around how their health information can be used and by whom for what reasons; I hear that there is worry that an organization that honors those wishes by blocking the data for a given use, that this Organization may be seen as violating the regulations forbidding Information Blocking.
In HTI-2 there is some discussion around some sensitive data that has been expressed as being a special case. However, this is just one kind of data that is or might be considered sensitive by a patient.
My concern is wider than just the ONC HTI-2 and the USA Information Blocking regulations. There are other state level regulations that might force data to be shared in circumstances for which the patient does not want to share. This is not to say I am against some required reporting, but to recognize that there is a wider overlap between potential sensitive classes of data and unreasonable expectations to mandate data sharing.
I am a fan of defining classes of data that are sensitive, that are generally stigmatizing health topics. These defined classes need a specific and actionable definition, so that it is clear to all what is within that class and what is not within that class. This is important to be sure policies work together when bridged. The reality is that these classes are not as distinct as we would like, but today they are hardly even given names of the classes.
One class that is discussed is sexual health topics; which seems clear but is not clear at the detail and technical level.
The Patient should be empowered to define what is sensitive to them. The use of sensitive classes of data should be a starting point, but the patient should also be allowed to restrict data within a timeframe, or data associated with a specific treatment episode/encounter, or even to identify specific data by identifier.
When these complex Consents can be implemented by an organization, and that organization allows more refined Consent provisions; then these restrictions should not be seen as a forbidden Information Blocking. We should not be questioning the patient's choices.
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