It might not be too long from now when healthcare providers across the country can share patient data electronically in just a few seconds. Indeed, according to a recent report from the Mountain View, Calif.-based research company, Frost & Sullivan, the health information exchange (HIE) market is set to grow significantly over the next 18-24 months thanks to various regulatory factors. The report’s authors say the main reason for the growth of the HIE market is the renewed certainty around the Affordable Care Act, thanks to the Supreme Court upholding it and President Barack Obama getting re-elected.

However, an HIE will only be successful if it is sustainable, and there is plenty more the industry needs to do to make health information exchange work sustainably from the standpoint of clinicians, vendors, and patients. As state level HIEs gear up, there are still pertinent issues they are grappling with, most notably constellations of issues around consent management and identity management.

Consent Management: The issue of patient consent is a big one—providers being able to transmit protected health information securely and efficiently to other providers through the HIE to make a patient’s information available where it’s most useful, at the point of care, is not possible without patient consent.

As of the end of January, HealthInfoNet , Maine’s statewide HIE, had brought together 31 of Maine’s 39 hospitals and 360 physician practices across the state. The system has always operated with an opt-out model, which is the most obvious way to have everyone in and leave it to the patient to opt out.  But according to Amy Landry, communications manager at HealthInfoNet, it comes down to patient awareness, and opt-in and opt-out are irrelevant at that point. “Since HIE is confusing to patients, it starts with education. Most patients want all of the information explained to them by their providers, who are their preferred choice of trust.”

If it is explained well, says Landry, most patients choose not to opt out. “They choose to keep their information in the system and they see the value of it,” she says. “They want to see that their records weren’t transferred and do not want to fill out five of the same forms again. Those are things patients look at and say, ‘this makes a lot of sense.’ When explained well, it is not difficult to get patients to want to participate. But getting the providers to explain it well and be able to differentiate between all of the other ways that patient’s information might be shared is the challenging part.”

Fran Turisco, a director at the Pittsburgh-based Aspen Advisors, says that with regional HIEs, it makes great sense to an opt-in model. But when it comes to the state level, she says, scrutinizing is more likely as the data gets further away. “I would take a longer and harder look at statewide exchanges, because with them, you have to consider all of the different levels involved, and you have to understand what information goes to each level.”

Identity Management: In order to successfully exchange health information and reap the benefits of HIE, organizations need to maintain accurate patient identification information. Patient identification integrity is a complex concept, and it doesn’t get easier now that many different care organizations are involved. There are several physician offices, hospitals, and other organizations involved, and everyone has their own medical record number (MRN), explains Turisco. But there are plenty of errors that are made with seemingly the most routine information, such as the misspelling of a patient’s name or nickname. “ Since we don’t have a national patient identification scheme, the best we can do is do what we have been doing for integrated delivery networks, which is the crosswalk and the algorithm, and build lists of ‘also known as’ identity numbers. But as these different types of organizations grow, it gets more complicated.”

There are ways to resolve that issue, says Devore Culver, CEO of HealthInfoNet, referencing an application called IBM Initiate, which provides a common HIE registry to manage both patient and provider data across the HIE. These registries are leveraged both within the core clinical exchange as well as in providing supplemental data in support of Maine CDC disease reporting. Most importantly, its master person index (MPI) helps HealthInfoNet ensure patient records are matched correctly in the database. The application uses probabilistic matching tools to determine the probability that based on certain demographic information, two records are for the same person. Culver says the merging of many records into essentially one is “fundamental” to HIEs.

ACHIEVING SUSTAINABILITY

Turisco says that when organizations come to her for consultation, their main problem is focusing too much on technology. “Organizations tell me that they need a technology infrastructure to support their accountable care organization (ACO). Then I ask them about what processes are going to change, and what will change for a physician on day one? More times than not, their answer is ‘I don’t know.’” And this is the problem—organizations are expecting technology to lead process, but in reality, process must lead technology, says Turisco. “If you haven’t figured that part out, if you don’t know what types of data will be shared, it will be hard to be sustainable.”

Probably the most fundamental challenge is bringing forward a portfolio of services that are actually valued, in the sense that they provide both economic and care impact that someone is willing to pay for, adds Culver, who feels strongly about the act of health information exchange not being sustainable by itself.  “I think one of the real challenges we face with exchanges in general is that no one has paid to move data from point A to B before,” he says. “If you allow exchange to be the sole focus of your efforts and don’t look for services to go beyond them, you’re in for a very long and challenging short term life cycle. You need to be diversified enough in your portfolio of services to add real value.  This remains one of the biggest challenges for statewide exchanges.”