HIEs in the Public Interests

In about an hour’s time I will head downtown to participate in yet another Commonwealth of Massachusetts HIE Consumer Workgroup meeting. The workgroup, formed by the Secretary of Health last Spring, is charged with insuring that the strategic HIE and more broadly, HIT plans for Massachusetts be inclusive of consumers’ future needs.

Now what those needs may be creates some challenges. The workgroup, representing a number of constituencies in the Commonwealth, has struggled to reach consensus oas topics have ranged from simple consumer education, via brochures in doctors’ offices, to providing consumers ready access to personal health information that may be aggregated within the context of an HIE to addressing consent on the sharing of PHI within the context of care delivery. On many of these topics we are flying solo as there is very little to draw upon as to best practices from other states as we are all, by and large, in the same situation now that some half billion plus of federal dollars have been handed out to states to create these HIEs. And let’s not even start on the regional sharing of PHI and consent thereof – a whole other can of worms.

But today’s meeting will be particularly interesting as the two Co-chairs of the HIE committee will be presenting to our workgroup the strategic plan that has been laid out for the statewide HIE.  Unfortunately, that plan at least in the short-term (Note: I have a TON of respect for John and what he does- simply amazing work) has completely ignored the consumer (I have come to prefer the term citizen as indeed it is the citizen of the Commonwealth, the citizen of the USA that is paying for all of this through their tax dollars) component.

In today’s meeting I hope to elevate this issue as there is little reason not to include the citizen, even at this early stage, in the HIE plan. There are a number of potential solutions, from creating a simple citizen portal on the HIE for them to view their PHI, to considering deploying the Blue Button on the HIE thereby allowing the citizen to download their PHI and place in a safe repository of their choosing and many options in between.

It is time that we stop the myopic focus on clinicians and what the HITECH Act can do for them and begin to focus on the public, the citizen, and what the HITECH Act can do for them.