Most healthcare stakeholders and observers can agree that the way healthcare costs are determined and communicated is, to put it mildly, a bit nonsensical. One of the biggest problems is that patients – the actual consumers of healthcare services – usually know nothing about the cost of what they’re buying.

Enter FAIR Health, a non-profit organization that emerged in 2009 as part of a legal settlement between the state of New York and the insurance industry. The lawsuit stemmed from then Attorney General Andrew Cuomo’s contention that there was a conflict of interest involved in insurance companies setting out-of-network costs of healthcare services using data owned and managed exclusively by the insurance industry.

FAIR Health was created to bring transparency to the process and valuable information to healthcare consumers looking for services not covered by their regular policies.

According to Robin Gelburd, FAIR Health’s president, IT plays an indispensable role in the organization’s work.

"We need an enormous IT capability to collect and synthesize cost data," she said recently. Moreover, given that part of FAIR Health’s charge is to make the data available to researchers, that data must be more than simply collected and stored.

"It’s one thing to show a mountain of data," Gelburd explained. "But if that mountain isn’t making sense to the consumer it’s of no use."

As Gelburd sees it, there are five significant benefits to FAIR Health’s IT-based programs.

1. The data is tangible. In the broadest sense, "We need to offer actionable information," said Gelburd, if consumers are going to benefit from it. To that end, in addition to their rapidly growing databases of cost information from around the country, FAIR Health just released a free mobile app, the Cost Estimator, which enables consumers to estimate charges for medical and dental procedures, as well as to access information on the organization’s website.
2. It gives patients options. For example, Gelburd explained, "if you decided to go out of your usual network (for a procedure), now you have information from the website giving what are the common fees" in a specific region for a specific procedure. That, in turn, enables patients to negotiate with providers.
3. It can be used "after the fact." Say you have an emergency and, upon receiving the bill, you decide to appeal the reimbursement decision. FAIR Health’s data gives patients a wealth of data that can be used in shaping an appeal. Gelburd noted that FAIR Health is focused on offering "a very customized tool" so that patients can view and use data in different geographic regions and with different specialty configurations.
4. It can be used to help decide between insurance plans. Regardless of what shape healthcare reform finally takes, the rise of insurance exchanges and increased competition between insurance providers means consumers will need to have good information to make good decisions. Using FAIR Health’s data, consumers will be better able to understand the different benefit configurations that are available.
5. It will help educate patients. "Giving consumers access to cost information is like giving them the keys to a new car," Gelburd said. Of course, getting the keys is one thing; knowing how to drive is something else. With that in mind, there’s "a very rich educational component" to FAIR Health’s mission, she said. "Everyone is confused by health insurance information," so FAIR Health also offers, among other things, a glossary that enables users to "scroll easily through a broad array of medical terms in a clear design."

While the informational sky may be the limit for FAIR Health, it has unrolled its services gradually. It began with its educational programs in January of 2011, then added dental cost information in April of that year, followed by broader medical information in August.

Regardless of its pace, however, the goal remains the same.

"We’re trying to marry sophisticated IT with consumer friendly tools to demystify healthcare costs," Gelburd said. "So that patients can become their own best advocates."

[See also: Cost, confusion hindering HIX development]