Editor’s note: In his recent Uplink article, Michael J. Berens of The Seattle Times showed how hospital admission data helped him uncover the scope of drug-resistant infections. But getting medical data is often difficult for journalists because of privacy rules.

Here, Nancy Amons of WSMV- Nashville explains how she overcame privacy obstacles to get data for stories about TennCare, Tennessee’s Medicaid program. Amons specializes in investigative and computer-assisted reporting and is a regular speaker at IRE and NICAR conferences.

Q: What is the biggest problem you run into while requesting health care-related data? How do you deal with it?

A: Privacy is always an issue. HIPAA laws [the Health Insurance Portability and Accountability Act, enacted in 1996 to keep patients’ identifiable medical information private] make it very difficult to access information that used to be more readily available. I got around it because I wanted information that was aggregated by providers.

For example, I wanted to know which doctors were prescribing certain kinds of drugs and in what quantities. That didn't require the release of any private information. I also asked for aggregate information about the trips that health care transportation companies were providing. I wanted to know the length and cost of the trips. None of that was private. It all involved public money being paid to contracted entities.

I was also able to get one database that TennCare had created that included patient names. It was a database of court cases where TennCare had sued to take the former patient's house after they died in order to repay a nursing home bill. Since the names were public record in a courthouse, TennCare didn't seem to have any problems releasing the records.

This is a common practice across the country. When Medicaid (health care for the poor) pays for a person's stay in a nursing home, Medicaid has a right to recoup the cost of that nursing home after the person has died. If the deceased owned property, the state can sell the property to cover the cost of nursing home care. There is an exception; if there is still a spouse or disabled child living in the house, the state can't take the house.

Another potential complication in requesting health care data is the type of computer programs that some health care agencies use. I was able to get data in common formats (Excel and Access) because the state was already using similar programs to analyze the data for trends.

Q: What is your approach to requesting health care data? Do you prefer asking for it informally or through a formal, written request? Why?

A: I make an initial request by telephone. I ask what kind of data is available, how it is kept, what period of time might be covered, what format it is in.

Then, I will usually write a request so that everything is clarified. There is usually a series of back and forth e-mails as we nail things down.

Q: What do you always make sure to include in any request for data?

A: It's critical to know exactly what the column headings mean.

Does "date" mean the date of the transportation for example, or the date the bill was paid? Does "mileage" mean the distance one-way or round trip? You want a written definition of what information is in each column. It's very helpful to see one full paper record if you can get one. In the transportation data, you might want to see what a trip ticket looks like.

Q: What kind of research should a journalist do before asking for health care data?

A: It's always best to have some background in your topic before you start.

If you are doing a story about doctors who prescribe a lot of painkillers, which could be used for resale, for example, you will want to know which drugs are most commonly sold on the street.

Q: Do you follow up with the person who gave you the data after the story airs? Why or why not?

A: I usually follow up with the person several times during the production of the story. We may talk quite often, as I am making sure the data says what I think it says. If I see an odd trend, I want to make sure it's not a quirk in the data. Sometimes I will talk to the people after the story, but I think it's more critical in the days before the story.

Q: Parts of health care data are often confidential (i.e. patients' names). How do you work around that?

A: It makes the stories very difficult when patient information is confidential.

For one story, I had what should have been confidential patient trip sheets leaked to me. The story involved state-paid transportation to doctor's office visits. A source leaked me the information on his former company because he felt they were turning in fraudulent billings.

The trip sheets I had showed the beginning address of the patient and the destination (such as a doctor's office address). The mileage didn't add up to the same mileage as the state was billed. I never could have done this story without the leaked information.

Q: How long did it take for you to receive the data after your initial request? Do you think that's typical?

A: I have not had to wait a long time for data from the state's Medicaid program (here it's called TennCare). I think that's because they do so much cost-control internally that it's easy for them to share reports they have already created. And it helps if you ask what kind of reports they already have on hand.

When I asked about how they track doctors they think are "pain pill mills," I found they regularly create a quarterly report showing the 100 or so doctors who prescribe the most [likely to be misused] schedule drugs.

Q: How do you think doing a broadcast story changes your negotiation strategy and/or how you use the data?

A: I don't know that it does, really.

Q: What other advice to do you have for journalists who want to request health care-related data?

A: As will all data stories, don't promise it to your boss until you have it in hand and have done some preliminary work with it.

I make sure I have the data in my hands and that it makes sense before promising a story. I want to have at least my preliminary interviews done before agreeing on an air date. However, every situation is different.

Erica Nochlin is a graduate student at the Missouri School of Journalism and a reporter/anchor for KMIZ-Columbia.