Talk of conditions of trust or the capability to send secure messages and information using the Direct protocol, is all well and good. However, without the legal right to exchange health information, none of those will lead to any improvements in care coordination and healthcare delivery. Something as simple as the lack of patient consent or regulations mandating aggressive measures around health data privacy and security could easily make those features and functionalities of health information exchange (HIE) moot points.
“Quite honestly, the one thing that concerns me about that growth or that future is HIPAA and some of the other consent models that are being adopted because that’s the one thing that could really stop HIEs — if the states or the feds throw more complexity into the privacy, security, and consent model,” says Richard Swafford, Executive Director of Inland Empire HIE in California. “Once I can’t use the data to provide additional value around those services, then I’m pretty much done. That’s the one thing that keeps me up at night.”
If HIE is to serve as a foundation on top of which other services and capabilities can be layered, these issues of patient privacy and consent must be hammered out. Inland Empire HIE is one of a handful of healthcare organizations working with the California Office of Health Information Integrity (CalOHII) on a Demonstration Project to mitigate obstacles to the exchange of health information as a result of state and federal privacy rules.
“We’re always working with our state-level folks to try to figure this out. California law is silent to consent models,” explains Swafford. “That’s what’s scary: because it’s silent to it, at any point it could be altered and have a dramatic impact on our entire environment. While we’re moving along very well in terms of our growth and sustainability and we’re going to be here for the long haul, regulation has the promise of causing all kinds of problems for us, above and beyond just the ability to deliver services.”
According to Swafford, Inland Empire and other successful HIEs across the country believe they are capable of making the exchange of health information both effective and secure so long as additional privacy and security regulations are not put in place to hamper progress.
“Give us the ability to function within our environment and we’ll make HIE work,” claims Swafford. “I don’t need the state to make it work; I’ll make it work. Just don’t make it harder for me to make it work. Many of the HIEs across the country that are doing well have adopted that same philosophy. We figured out a way to make HIE work, make it valuable, and make it adoptable, but don’t stand in my way.”
Swafford and Inland Empire HIE are actively working with state and national associations to see that consent models (e.g., opt-in versus opt-out) don’t undermine the evolution of HIE. So far, the organization has engaged with California Medical Association and American Medical Association to bring the issue of consent to their attention.
This advocacy, however, may prove fruitless Inland Empire HIE unless the reasons for patients choosing to withhold their information from exchange are properly understood and accounted for.
“One of the key areas that we brought to the California Medical Association and is being brought to the American Medical Association to lobby and figure out how we make this work is that in an opt-out model,” continues Swafford, “the first people to opt out of our HIE are the drug seekers. They are the very first people to opt out. They don’t want anybody knowing that they’re out seeking certain pharmaceuticals.”
Beyond sustainability and functionality, the challenge in the way of advancing HIEs could very well center of their ability to work with state and federal officials to keep the necessary amount and kind of patient data flowing on their networks.
“We’ve been lobbying very hard at the state and federal level to try to create an exception around the model to make medication reconciliation, med history, an exception to the opt-out rule,” observes Swafford. “So the patient removes consent but still the visibility to the medication history is available. Those kinds of small nuances in the law can have a positive impact on HIE — not just ours, but across the board.”
With Stage 2 Meaningful Use to begin in the Fall and many accountable care organizations working to improve care coordination through the exchange of health information, the matter of patient consent still looms large.