Ask TON: Finding Patients

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Welcome back for another installment of Ask TON. Here’s our latest question:

“What methods do you use to find patients for a medical story, and what kinds of questions do you ask them, or their doctors, or yourself, to vet whether a particular patient is the right fit for a story?”

Pam Belluck, health and science writer, The New York Times:

My way of finding patients for medical stories can vary depending on the type of story, especially how sensitive the subject matter is. Approaches can include asking physicians and other health providers. (Note: Sometimes providers misconstrue the provisions of HIPAA, the Health Insurance Portability and Accountability Act, to mean that they are not allowed to ask patients if they want to talk with a reporter. That is not true. They can ask, and if patients agree, the provider can arrange to connect the reporter with the patients.) Other avenues include social media, support groups, patient advocacy groups, lawsuits and other records, and researchers.

To determine whether a particular patient’s case is appropriate for a story, first, of course, I verify facts and cross-check the patient’s version with others. That can mean talking with health providers involved in or knowledgeable about the case. It can mean looking at medical records, which are always a good thing to ask for. It can be helpful to talk with a patient’s family members. On a larger level, I often do a lot of reporting before and after talking with patients to make sure I have a good grasp of the illness or medical situation I am writing about. That helps to determine whether the patient’s case is typical or atypical, and how it fits into the context of the subject I am writing about.

Mark Johnson, health and science reporter, Milwaukee Journal-Sentinel

If the story is about a new type of surgery, new technology, etc., I usually ask one of the doctors I’m interviewing to recommend a patient. Best scenario of all is to get a patient who has not yet gone through the procedure, then ask for permission to watch. That’s the best way of ensuring you’re not getting a canned, artificial good-news story. It’s not that I have any problem with good-news stories, just that I look for unfiltered stories. I love not knowing what might happen, how things might turn out. I always try to interview patients before their procedures to get a sense of what they’re like, what’s at stake with the procedure, etc. It also helps because when I’m in the operating room, I’m not watching a total stranger. I know something about this person.

Linda Marsa, freelance health and science writer:

Before you start looking, I think you first need to know exactly what you’re looking for so you don’t waste a lot of time casting a wide net. First, what is the focus of the story? Breakthroughs in cancer care? New gene therapy treatments? Sleep disorders? Gender differences in medical care? The long-term health consequences of industrial accidents?

Then you need to know the demographics of the publication so that its readers can relate to the patients you highlight. Is it aimed at women over the age of 40? Men in their thirties? Or is it a general-interest publication? That will also help narrow your search. Obviously, you’re not going to profile a 60-year-old woman for Self, which is aimed at women in their late twenties and thirties. This is something that you should discuss thoroughly with your editor before you start your search so that you’re clear on what you’re looking for.

Once you know what type of patients you’re seeking, there are a host of resources that you can tap into. The first question you have to ask yourself is: Who would know?

  • If you’re doing a story about a pharmaceutical breakthrough or a new therapy, the chances are that the new drug or therapy has undergone preliminary tests (clinical trials) at major research institutions. These days, major hospitals, research institutions, and universities are media savvy and have public-affairs or media-relations departments that will help you identify patients. I’d start there. If it’s a drug developed by a particular company, their media-relations department has probably identified patients that are willing to talk to reporters.
  • Other excellent sources for patients are associations, whether it is for a particular illness (stroke, heart disease, breast cancer) or for a medical specialty (sleep disorders, neurology, pediatrics). The American Heart Association, for example, keeps an extensive list of patients of various ages, genders, and conditions (heart disease, stroke, high cholesterol, etc.). They’re an excellent resource for anything heart-disease related. Similarly, many of the major breast cancer organizations either have patients willing to talk to the media or can direct you to places that keep these lists. Many times, associations will have support groups. They are often willing to send out emails to the groups to see if anyone is interested in speaking with a journalist.
  • Look at previous stories done on this topic. Obviously, you don’t want to use the same patients. But the hospital, research center, or university that may have furnished a patient for one story may have others. Or they may know of other places that are doing similar research. That’s another resource.
  • Activist organizations—environmental coalitions, etc.—often keep lists of people injured in industrial accidents, etc. I found extensive sources for a story I’m doing on environmental justice through these types of groups.
  • Social media. You can send out a query on Twitter, Facebook, and through an email blast. I found sources for a story I did on statin use through my Facebook connections. I needed something very specific here, too: a woman who would be recommended to take statins under the new guidelines but decided to try diet and exercise first; and a man who did diet and exercise but it wasn’t enough and he had to take statins.
  • HARO: Help a Reporter Out. I haven’t used this in quite a while. But if you’re stuck, they can send out a query to their extensive network:

Once you’ve worked up a list of potential patients, you have to look hard at their stories. Do they fit the magazine’s demographic? And it’s not just age, but also their social status, education, marital status, etc. Geographic distribution might be a consideration, too. For the statin story, my female patient was a 55-year-old real estate agent who lived in Los Angeles, while the male patient was 70, a musician, and lived in Spokane. Is their story dramatic enough so that they provide a good jumping off point for your story? Is what happened to them something the readers can relate to? Bear in mind that sometimes, people are very sick and their story is just too complicated for the relatively short space you’ll have in a magazine piece. You have to be judicious in your selection. For the most part, readers need to read the story and think that this could happen to them. If you’re writing about someone who leads a disordered life, it’s easy for readers to dismiss their problems and not believe it could happen to them.

You also want to be sure their story is accurate and that it’s not going to fall apart in fact-checking (which happens!). Getting sources from legitimate organizations—e.g., the American Heart Association, the Alzheimer’s Association, etc.—helps on this score because they will have already vetted the patients. If you find them through other channels, ask to speak to the patients’ doctors in order to double-check everything. Let patients know you’re doing this for their protection, too. And if they balk, move on. Here again, you don’t want people suddenly pulling out at the last minute, or to have a story fall apart in the fact-checking process.

And it can get tricky for other reasons. I worked on a story on the long-term fallout from industrial accidents. Most of the people I interviewed were great. But the one person I interviewed who had the most dramatic story was just too volatile. I just didn’t feel comfortable using him for the story. Again, this is a judgment call.

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