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Governance and Consent: Thinking About the Practical Challenges in HIE

January 28, 2014
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When it comes to patient consent, HIE leaders agree, governance is a key factor in success

It was fascinating to be able to listen to the discussion as health information exchange leaders shared their perspectives on governance in HIE, during the Health IT Summit that was held Jan. 21-22 at the Manchester Grand Hyatt Hotel in San Diego.

The discussion, which took place on the second day of the event, sponsored by the Institute for Health Technology Transformation (which since December has been a partner with Healthcare Informatics and its parent company, Vendome Group LLC), ended up bringing together two important concepts—governance and patient consent—both of which have been among the most problematic in HIE development and sustainability.

Indeed, not surprisingly so, since those two elements are linked both strategically and operationally.

As Daniel Chavez, executive director of the San Diego Regional Healthcare Information Exchange, noted, whether or not patient consent is a big issue for a particular HIE organization “depends on your governance model and the precepts around which you structure HIE. In San Diego,” he noted, “we have a hybrid model that allows for each physician group to choose: opt-in, opt-out, or emergency use; or the null option. And some choices are dictated by the vendors, because some vendors aren’t able to accommodate all choices.” As a result, he noted, “We’ve had mixed success with this; we probably have the most complex model of consent that there is.” Importantly, he noted, if at all possible, it’s ideal to get a community-wide consensus on the general consent model.

David Chou, CIO at the University of Mississippi Medical Center in Jackson, agreed with Chavez, saying that “Governance is going to be very crucial. Patients will go to different facilities and organizations for care,” he noted.

And Bill Beighe,  CIO at the Physicians Medical Group of Santa Cruz (California), and of the Santa Cruz Health Information Exchange, noted that “Santa Cruz took a different approach, because we were very early in our development of our HIE, back in the 1990s. So we chose an opt-out model, which means the patient’s information is shared unless they don’t want it shared.” Beighe and his colleagues have been successful at implementing and maintaining a rigorous, well-thought-out process of requesting patient consent, one that has result in an opt-in rate that he described as “northward of 99.9 percent. We have not found this [refusal to consent] to be an issue. But I think we’re ten years away from real consent, at the atom level,” he noted.

And isn’t that a crux issue? I think it is. As all the panelists at the San Diego conference emphasized, patient consent simply does not stand on its own when it comes to health information exchange, and inevitably, that leads to a governance discussion—early and often—in the development and sustaining of any HIE enterprise. Now, none of this is news to anyone who has tried to succeed in the HIE arena, but it seems clear to me that this essential issue so often gets lost in the shuffle amid discussions of more “exciting” or “glamorous” issues.

Or, as Chavez put it so articulately, “I think the key all this is to constantly iterate with governance. The key to consent is scalability. We talk about scalability in terms of technology and operations. But it’s absolutely key to scale your consent model. Right now, our consent model in San Diego County doesn’t scale. So we’re working on it, monthly.” Exactly.