A study conducted by ORC International and released by the Society for Participatory Medicine found that nearly 75 percent of American adults surveyed believe it is very important that their critical health information be easily shared between physicians, hospitals and other health care providers.

For most health care professionals, it's a relief to know that the general public is on board with record sharing because it is a central part of health reform and the overall initiative towards better, faster, more affordable treatments. So then why does it remain such an elusive goal?

DOTmed News spoke to Dr. Danny Z. Sands, co-founder and co-chair of the Society of Participatory Medicine and a practicing physician, about the hurdles remaining between the "dysfunctional" environment we have today and the integrated, open-access health care system of tomorrow.

DOTmed News: With so much conversation about integrated health records and access to meaningful information, why is the goal so difficult to achieve?

Danny Z. Sands: Despite the dire need to have patients' clinical records available to physicians when they are caring for patients to improve the quality of care and reduce costs, it is still uncommon.

There are several reasons for this under the broad categories of technological, business, governance, and process, and overlaps among them.

Although physicians at many practices and health systems are now using an electronic health record, data would need to be sent to another site. This would have to be done using common standards for representation of data.

Moreover, there aren't yet mechanisms for a clinician caring for a patient to request a single data element or even an entire patient record from another facility.

In some parts of the country, this is done through a "health information exchange," which is a system with which participating practices and facilities share their data. Then authorized users can log in, identify the patient, and view their information.

DOTmed News: What are the barriers with regards to HIEs?

DZS: The barriers involve ensuring that patients in the region either opt-in or have the opportunity to opt-out, connecting as many health care facilities to the exchange as possible, streamlining the user experience, and getting busy clinicians to use the information. (In very few cases is this information available to clinicians directly through their EHR and stored along with other data.) Practices and facilities don't necessarily want to release the information, because that would mean patients could be seen at other facilities, and receiving facilities usually get paid every time they perform a test, so they're happy to repeat any tests needed.

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.

DOTmed News: What does this survey tell us that we may not have known before?

DZS: I don't think there have been prior cross-sectional surveys of public opinions about the importance of health information exchange, especially about attitudes towards payment for exchanging records.

DOTmed News: How far off into the future is safe, open access to the records physicians need, when they need them?

DZS: I wish I knew. We have such a dysfunctional health care environment right now. I would hope that with the maturing of health information exchanges, the evolution of the technologies, and perhaps some regulations to mandate information exchange and prohibit usurious business practices for what is obviously a public good that we will have reliable and usable universal health exchange within the next 5-10 years.