Appropriate governance for these HIEs is crucial and often challenging, since stakeholders from across the continuum of care should be involved and they aren't accustomed to collaborating.

And then there is the issue of sustainability. Many HIEs were established with grant support, but once the grants run out the systems need to be sustainable.

Finally, many EHR vendors are part of the problem, because they may charge facilities for interfacing to HIEs (either a one-time fee or a recurring charge) and may even charge for transaction volume.

DOTmed News: How can the industry assure the one in four Americans in the survey who do not support open access that it will be safe and their personal data will not be abused?

DZS: You refer to another barrier to HIE, which is that patients may be concerned about the sharing of their health data. This is top of mind for consumers right now, in the wake of recent massive data breaches at two large health plans.

This is why governance and funding must be in place to create and enforce policies, implement technology (both for security and for audit trails), and educate the populace. As part of this, decisions must be made about patients having to opt-in or being permitted to opt-out, both of which impact the utility of the HIE. Security must be considered at the outset and should utilize best industry standards, with frequent security reviews.

DOTmed News: What justifies the expenses doctors face when setting up connections with labs, HIEs, and governments?

DZS: For one thing, Meaningful Use 2 requires health information exchanges and MU3 will likely have higher standards. For another, this may be legislatively mandated. But as mentioned, I think it's unfair for vendors to be extorting ongoing payments from medical practices.

Physicians who are in practices affiliated with larger health systems may bear the brunt of these fees.

DOTmed News: Did your survey yield any insights into specific demographics showing greater skepticism towards physicians openly sharing health records?

DZS: Although the differences were small, young people (18-34) and those who lived alone were less likely to feel that data sharing was important. This may be because of their limited experience with the health care system.

One surprising finding was that older respondents, and white respondents, those of higher income, and those with higher education were less likely to report having experienced delays or problems in care due to unavailability of shared health information. This may reflect the ease with which this group, which may have better health insurance coverage, is able to advocate for themselves and/or have tests repeated. We did not have a large enough population to perform multi-variable analysis.

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