AMA Journal of Ethics^®

Q. What are the elements of ethical health care coverage? What special considerations must be made for stories about health care?

A. There are two special considerations. The first is that you are dealing with some basic privacy concerns that you perhaps don't have in other arenas. The details in a typical news story—a person's age, his address, where he works—those aren't details that violate confidentiality. But when someone is revealing a debilitating, chronic illness or an inherited or immunosuppressed condition, the simple identifiers mentioned above take on significance. How much do their kids—or their employers—know? How much do their spouses know? Even for the subjects themselves, seeing their own personal information in print can be shocking.

As reporters we are used to dealing with people who are, for the most part, media savvy. With medical stories, you are often talking with people at a very vulnerable time in their lives, and they're under a lot of pressure—financial and emotional—because in many cases they are making life or death decisions. A responsible reporter wants to walk these people through the media process more carefully than is necessary for subjects of another beat.

Q. How does HIPAA (the Health Information Portability and Accountability Act) affect your work as a health care journalist?

A. Reporters don't have to worry about being in accordance with HIPAA when they are writing. HIPAA comes into play when they are trying to get information, so it has made research a little more difficult in some cases. It used to be a lot easier to get people to give you information off the record or unofficially that related to a story, even if they included patients' names and dates and other facts, because you could explain that you were not interested in publishing individual patient details, just in the aggregate data. Let's say you called a hospital and wanted to find out whether they were treating a patient for hantavirus. In the past, the hospital spokesperson would tell you. It was good for them. They wanted to be the hospital that was considered smart enough and talented enough to be managing a tough case, and they thought it was good press. Today people would be subject to penalties for releasing that information.

A wealth of data is still available through California's Office of Statewide Health Planning and Development and through Medicare and from independent groups that collect data. And of course patients have every right to request their own medical information and give it to you. The first step in reporting a story about a specific patient is to tell the patients themselves or family members how it benefits them to have the story told through their records. Often times you are helping them by interpreting events; you're taking records to other experts. I've worked on a number of stories where I have seen what looked like an oversight in the way someone was treated, and I've gone to outside experts and found that indeed there was a deviation from the standard.

Q. How do you balance importance of covering long-standing health topics with the demand for hot new ones?

A. That's the second important consideration—deciding what health-related stories to cover and how to cover them. There is a place for long-standing topics—diabetes, heart disease, cancer, asthma, even obesity, which is both a long-standing topic and a hot one. It is important to report on research, and it's critical to discuss the effects of lifestyle on illness, but I think that message is getting out. The public is not suffering from a lack of information about how to prevent diabetes, lung cancer, heart disease or obesity or how to maintain the best health once you have been diagnosed with one of these illnesses. It's difficult to make those stories fresh in the same way that a SARS outbreak, for example, is fresh.

Something to realize about media stories on avian flu, SARS, anthrax and other hot topics is that they often are written by nonmedical reporters because they have a wider scope or make connections to terrorist activities, September 11 and the sprawling global economy. So it isn't just your health beat reporters writing these stories.

Q. Speaking of "fresh" stories, what is media's role in preventing panic about epidemics?

A. Some of that is up to the media, but most of it is up to people themselves. My guess is that most people who showed up in the emergency room with symptoms of SARS, for instance, had not read stories about that topic carefully or didn't see the more in-depth TV coverage. They heard something third-hand about breathing difficulties being related to some epidemic and they went to the emergency room. Some of those people are going to show up at the emergency room anyway because they are just prone to thinking they are sick.

The media does have a burden to explain the true evidence for the presence of an epidemic, what the real numbers are and what the qualifiers are—that bird flu, for example, has not been transmitted from person to person. I don't think we spend enough time talking about these specifics because we think the story will become so complicated that readers won't get through it. In broadcast journalism, there is just not enough time. So people read or hear an incomplete story and don't get the stray sentence that says how few people have actually come down with avian flu, say, or that it hasn't been transmitted from person to person. I've seen some events referred to as epidemics when the number of cases is in the single digits. That gets balanced by saying there were no cases in the previous 10 years and now we have four cases and that could be the beginning of something significant.

I guess the concern with viruses like avian flu and SARS is that we seem to be heading towards something much bigger, and we don't want to be accused of not sounding the alarm early on when we should have. But I have seen lots of responsible coverage that pointed out the shortfalls in the evidence and the extreme unlikelihood that anyone would contract one of these diseases. That has been my sense of the popular press.

Q. What is your take on the sensationalizing of news by those who pick up a story and repackage it?

A. That is a serious problem, and I don't know what major media outlets can do. It doesn't just happen in health care; it's in every aspect of what we cover. News stories are, basically, factual building blocks. If the blocks are set up one way, you have a secure structure with balance and information that is going help people make good decisions. If advocates for various causes or positions take those blocks and use a third of them here and a different third of them elsewhere, and take quotes out of context to push an agenda, there is little the media can do. In an effort to build like-minded constituencies, such people grab things willy-nilly from mainstream stories and put a veneer of legitimacy on it by saying it appeared in the New York Times or the Wall Street Journal, or they don't source it at all—as though it was their own reporting—and use the resulting piece to say, for example, that vaccines cause autism or that asthma has a particular source that they are fired up about. Then through e-mails and Internet posts, you end up with a lot of people being misinformed. One possible tactic that some reporters are taking is posting their original documents, the actual basis for the stories, on the Internet.

Q. Is it fair to say that the medical community is under more scrutiny than ever before?

A. I would agree with that. I have a good friend who is a physician, about my age, and he's talked about just that fact. The public has expectations that all physicians will be right every time. Patients are more willing to get second opinions—which is a good thing; they should be. They come to the doctor's office with print-outs from the Internet, or they're convinced by an ad they've seen on television that they need a particular drug. There is much more interference in what used to be a pretty closed relationship between physicians and their patients.

A possible downside to the intense scrutiny is that doctors become wary of trusting their instinct. Like all expert professionals, physicians know something and they have intuitions. The entire system would be crippled if physicians had to stop and look up every possible question in the book before making a decision. There has to be a balance. Medicine is a science and an art, right?

Q. How does the presence of physician-journalists affect you as a health beat journalist without a medical background?

A. I don't really feel like I am in competition with anyone's medical background. I'm far more interested in whether or not physician-journalists are decent reporters. It is always good to have pressure from below to be better and to be more open about what we do and do not know. I always tell reporters that they shouldn't pretend to know more than they do in an interview with a physician to try to impress him or her. They should go in explaining how much they don't know. It's always better to say, "Here's how it looks to me. Explain to me why I may be wrong." Or, "I have no idea what I am at looking here. Can you explain it to me?"

Q. What are your recommendations to physicians on how to interact with media?

A. Don't assume that we're the enemy or that we're going to get you sued or that we are a nuisance. Physicians should recognize that media stories can either do a lot of damage or a lot of good. In fact, despite the worst cynical views people have of reporters, 99 percent of them really just want to get it right. They're under the same kind of threat of a lawsuit as the doctors are, and they run the same risk of losing their jobs if they keep making mistakes.

When we call physicians for a quote or background on something, we expect that, if it's outside their area of expertise, they'll do us the courtesy of saying so—maybe refer us to someone else. If it's a subject they're intimately involved with, I think they should at least have a conversation on background with the reporter. I don't think doctors understand how valuable it can be just to provide background with their names not being used and no quotes attributed to them, but just helping to illuminate a story.

If I'm writing about a doctor who has had a series of bad deliveries and several babies have died, and I go to a leading obstetrician in the field and say, "Hey, will you look at these X-rays?" and that doctor says, "Gosh, I don't want to be part of that. In fact I know this doctor and he's a really nice guy and I don't want to get caught up in that." I say, "Look these babies are dead; these parents are distraught. Did something go wrong here? That's what I want you to help me understand because if there's nothing wrong then I'm not going to do this story." That's where I start with a lot of my reporting. It's just getting someone else in the outside to say, "Yes, there's something here."

Now, the physician who is the subject of an investigative story—I can understand the reluctance, but even then he or she should want to explain things in detail to make sure reporters are on the right track. If it's a serious mistake the physician is accused of, I, as a journalist, want him or her to know it early and have a chance to respond. Doctors who talk come off better in most stories because, even if I have the most damning evidence in the world, they sound less human if they are not even willing to have their voice in the story. At the bare minimum, they can offer sympathy for the patient or family that was harmed.

In sum, doctors can have a huge impact one way or another. They can stop the story or they can help put you on the right track. My advice to physicians is to set the ground rules; make sure the reporter understands that this call is either just for background or that you may be quoted and then talk as descriptively as you can.

Q. Where do you think the media could be doing a better job?

A. There's a lot of talk about what's wrong with the way health care is financed. There are some decent stories about this here and there, but it clearly hasn't had the impact it needs to have to catalyze change. The media just haven't found a way to make the problem real to people or to explain some of the different solutions that are being tried. Many people blame drug costs above everything else because they feel the pinch when they run into a wall with their insurer and can't get a drug they want. But hospital costs are a huge portion of the increase in health care spending. So either people just don't see those costs because they share them with insurers, or it's more sexy to write about drug costs because then you can talk about direct-to-consumer ads and the falsehoods or shadings of the truth that go into shaping them. That's easy to write about; it's colorful. But why are the entitlement and other financing systems collapsing under their own weight? Those stories are more difficult to tell.

Another area the media should investigate in depth is what we are sacrificing in potential cures when we lose species and biodiversity because we are destroying ecosystems around the world. What are the health effects of global changes in climate and in weather patterns? What are the long-term—not just the immediate—health effects of a natural disaster like Katrina? Again, these are tough stories to tell, but it would be nice to see more of that.

Q. Many people in the medical community see the media as the enemy. What would you say to that?

A. I would just underscore my earlier comment: when a doctor gets a call from the press, the automatic reply shouldn't be, "I'm too busy; I'm not going to call that person back." We talked earlier about people rushing out to the ER. When a doctor is able put some of these fears to rest by talking to a journalist, this helps keep people at home. Doctors occupy a high status in this country, much higher than that of journalists and higher than that of lawyers. They spent a lot of time learning their profession, and they are committed to the overall good of humanity. With that status comes a bit of responsibility for interacting with the public and not just staying hidden in the office treating patients one-on-one. The profession has a duty to the whole potential patient population out there in the country. They can stop a wrong-headed story in its tracks. And they can help shape a story that is going to expose something ugly in the field, something that should be exposed; they can help that story be fair and accurate. So I would say take that call and give that reporter 10 minutes of your time and you'll find it was time well spent.