Kate and Scott Savett were trying to be responsible when they needed some medical care. They live about an hour north of Philadelphia with their dog, Frankie. Scott, 43, is a chemist and designs software for labs; Kate, 37, works in life insurance.

They buy their health insurance through Scott’s job, and to keep their premiums affordable, they chose a high-deductible plan. They understood from the beginning that this would mean shopping carefully when they needed care, because costs can vary a lot among doctors and hospitals.

For years the couple didn’t use their insurance much — but that all changed this year.

Kate was diagnosed with multiple sclerosis in January. Doctors did a lot of tests and then follow-up tests. On top of that, Scott needed some imaging tests for a spinal issue.

Under their insurance plan, the two have to pay in full for the first $3,000 of their combined care. After that, they still have to pay 20 percent of the cost, until they reach a total of $8,000 in out-of-pocket expenses.

That experience made them want to find the best care for the best deal. But how?

They investigated, using an online cost estimator offered through their insurance company.

Scott logs in to use the tool, and searches for the typical cost of MRI scans in his region. The online calculator tells him the average cost is $1,270; the lowest is $512 and the “above average” is $1,790.

The tool then produced a list of different providers and an estimate of how much they will specifically charge under the plan the Savetts have.

At first, this kind of information seemed great to the couple. But it quickly proved to be quite the headache.

A few days before Kate was scheduled to have her first MRI, she and Scott got a call from the radiology office, saying that the scan would cost them $2,400. They were shocked — the online calculator had told them it would only be about $500.

What’s the source of the disconnect?

A hospital had bought the imaging center and raised the price.

There were misquotes on other procedures, too. The Savetts received some bills from health providers that were as much as a thousand dollars higher than the price the online calculator had led them to expect. Another time, they couldn’t find any listings at all for a procedure one of them needed.

The two quickly plowed through their $3,000 deductible. Financial planning became increasingly difficult. They delayed buying a new water heater for their house.

“It’s hard for us to pull the trigger on that, knowing that another bill could be coming around the corner,” Kate says.

It’s unclear how common these inaccuracies with online estimators are, but the tools are becoming more popular, as patients shoulder a bigger share of the cost of their medical care. Outside companies are developing the online calculators, and most insurers offer them.

“Each one of them — whether it’s Aetna, United, Cigna — they all have something,” says Francois de Brantes, the director of the Health Care Incentives Improvement Institute, a nonprofit based in Connecticut. De Brantes has been paying close attention to price-transparency tools.

“There’s lots and lots of variability in the information that’s provided to consumers,” he says.

Some of the estimators reflect an aggregate range of possible costs; others are based on historic pricing, or claims data from varying sources. Many, he says, are limited in the type of procedures they include.

As for United Healthare’s cost estimator — the one the Savetts used — Craig Hankins of UHC gives it an 8 out of 10 in terms of accuracy.

“Right now, I would say if we look at our tool, relative to others that are offered, I would say ours is average — if not above average — in terms of breadth of services as well as accuracy,” Hankins says.

UHC’s cost calculator is based on current information, he says, adding that it is in the insurer’s interest to have the online tool work. If members get care at an acceptable cost, that saves everyone money.

But, he says, the tool has limits — it’s hard to predict what a particular doctor will actually do during an exam, treatment, or office visit, and how he or she will bill for it.

That gets at a deeper challenge with these online estimators, says David Newman, director of the nonprofit Health Care Cost Institute, in Washington, D.C. The way billing and reimbursement works in health care is extremely complicated, he says.

“There are 8,000 procedure codes, tens of thousands of diagnostic codes, a million different providers, and hundreds of insurance companies,” says Newman. Calculators are often based on one specific procedure, so they may not reflect all that happens and is billed for during a visit. In that way, he says, “this is probably going to be as good as it gets.”

But de Brantes thinks much more improvement is possible.

“It’s not that difficult. It really — technologically — is not that difficult at all,” he says.

The information people like the Savetts are seeking exists in the health care system, de Brantes says, even if in some cases it is hidden behind contract agreements. The bigger problem, he says, is that there is no internal pressure to make the online calculator work as well as it could. Health care has thrived in an opaque environment where costs are hard to find.

But the needle is starting to move. Employers are demanding these tools for their employees. And several states mandate public reporting of price information.

As for Scott and Kate Savett, the current climate has turned each of them into a new breed of health care consumer: a savvy one.

Scott says he knows they are approaching their $8,000 out-of- pocket cap for the year, which means insurance will soon cover the entire cost of their care. But he doesn’t want to give in. He wants to see improvements.

“I would rather crawl to that $8,000 cap than sprint to it,” he says. “I know we’re going to get there this year, unfortunately, but to blow it all on an MRI that’s excessively priced rubs me the wrong way.”

A few weeks after we first talked, Savett received a bill for his MRI. Turns out, it’s pretty close to what the estimator predicted it would be — $1,100. He says he will keep using the tool; but he sees it as an imperfect clue rather than a price tag.

This story is part of NPR’s reporting partnership with WHYY’s The Pulse and Kaiser Health News.

Copyright 2015 WHYY, Inc.. To see more, visit http://www.whyy.org.

Transcript :

STEVE INSKEEP, HOST:

Today in Your Health, we will report on people who try to find out the cost of medical procedures before having them done. We emphasize they try to find out the costs. Many insurance companies offer tools to get estimates. But as Elana Gordon from member station WHYY reports, the tools often fall short.

ELANA GORDON, BYLINE: This story begins with a couple who was recently thrown into the thick of health care costs. They live about an hour north of Philadelphia.

SCOTT SAVETT: I’m Scott.

KATE SAVETT: Kate Savett.

S. SAVETT: We met in 2005 on eHarmony.

GORDON: They got married in 2007. Scott’s 43, Kate 37. They hadn’t used their insurance much until this year.

S. SAVETT: For me, it’s been relatively minor stuff, but for Kate it’s been a little bit more – what? – (laughter).

K. SAVETT: I was diagnosed with multiple sclerosis this year.

GORDON: It happened in January. Kate recalls certain parts of her body went completely numb. Doctors had to do a lot of tests. And separately, Scott not needed an MRI for a spinal issue. Under their insurance plan, they’re on the hook for about $8,000 of their care. So they wanted to find the best place for the best deal. But how?

S. SAVETT: You first have to log in to the main UnitedHealthcare site…

GORDON: They investigated with the help of a nifty online tool, touted by their insurance, UnitedHealthcare.

S. SAVETT: …On the right side here an icon that says estimate health care costs…

GORDON: He types in the procedure – an MRI scan.

S. SAVETT: …Without dying…

GORDON: And voila.

S. SAVETT: So it tells us that in our area, the average cost is $1,270. The lowest would be 512.

GORDON: The tool also gives him a list of providers in his area and shows a specific estimated cost of the procedure at each of those places. This seemed great. But for Scott and Kate, the tool quickly became a headache.

S. SAVETT: Two days before Kate was scheduled to have her first MRI, we got a call from the provider, saying oh, by the way, the MRI is $2,400. The cost estimator told me it would be 500 and change. So what’s the disconnect?

GORDON: They learned that a hospital had bought the facility, and so the prices had all gone up. The tool misquoted them for other procedures, too, often by more than a thousand dollars.

S. SAVETT: I was frustrated, mad. I mean, I went through the range of emotions.

GORDON: Financial planning went out the window. They pushed back buying a new water heater for their house.

K. SAVETT: It’s just really hard for us to pull the trigger on something like that knowing that another bill could be coming around the corner.

GORDON: It’s unclear how common these inaccuracies with estimator tools are. But such products are becoming more popular, especially as more people shoulder more of the cost of their care. Companies small and large are developing them, as are insurers.

FRANCOIS DE BRANTES: Each one of them, you know, whether it’s Aetna, United, Cigna, they all have something.

GORDON: Francois de Brantes is director of the nonprofit Health Care Incentives Improvement Institute in Connecticut.

DE BRANTES: There’s lots and lots of variability in the information that’s provided to consumers.

GORDON: Some reflect a range of possible costs. Some use old data or don’t have complete information. As for the estimator Scott and Kate used, Craig Hankins oversees United Health’s digital side.

CRAIG HANKINS: Our tool relative to others that are offered, I would say ours is average, if not above average in terms of both the breadth of services as well as the accuracy.

GORDON: Hankins says the tool is based on current information. But it can be hard to predict what doctors will actually do and how they’ll bill for it. For David Newman, director of the Health Care Cost Institute in Washington, D.C., that gets at a deeper challenge with these tools. Billing and healthcare is complicated.

DAVID NEWMAN: There are 8,000 procedure codes, a million providers and suppliers in this country and there’s hundreds of insurance companies. In real time, this is going to be probably as good as it gets.

GORDON: But Francois de Brantes says the bigger problem is the health care industry has grown up around keeping prices secret.

DE BRANTES: It should be 100 percent accurate. You’ve got to schedule with very specific dollar values that have been negotiated between the plan and the provider.

GORDON: The needle is starting to move. Employers are demanding better estimates for employees. Several states now mandate reporting price information. As for Scott Savett, he knows he and his wife are now nearing their $8,000 out-of-pocket cap. Insurance will soon cover the entire cost of their care. But still, he says…

S. SAVETT: I would rather crawl to that cap than sprint to it. I know we’re going to get there this year, unfortunately. But to blow it all in an MRI that’s just excessively priced rubs me the wrong way.

GORDON: A few weeks after we spoke, Scott got a bill for another MRI. It was actually pretty close to what the estimator had predicted – $1,100. He says he’ll keep using the tool, but he sees it as an imperfect clue rather than a price tag. For NPR News, I’m Elana Gordon in Philadelphia. Transcript provided by NPR, Copyright NPR.