Telling Patient Stories: Transform Complicated Features Into Compelling Reads

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Published on
November 19, 2011

interviewing patients, charles ornstein, linda marsa, reporting on healthPulitzer-Prize winner Charles Ornstein of ProPublica shared insights with the California Endowment Health Journalism Fellows into how to find just the right patient anecdotes that transform stories into compelling reads, and how to avoid some common pitfalls inherent to this type of newsgathering.

It was "the worst day of my career," noted David Wahlberg, a veteran reporter at the Madison, Wisc., State Journal. That day, a front page story he wrote featured a patient who had undergone a new treatment for brain aneurysms but who had actually died six days before the story ran-and the hospital failed to notify him of her demise.

Wahlberg's story illustrates the promise and perils of using patient anecdotes, says Charles Ornstein. Real life medical stories "can make a story come alive," says Ornstein, because they put a human face on complicated issues, ranging from treating complex conditions or diseases, medical mysteries and scientific breakthroughs to investigations of medical errors and abuses or problems with access to care. But they can also be misleading by hyping unproven treatments, highlighting trends that don't exist, or featuring satisfied patients who died. "This is the sort of nightmare you face," says Ornstein. "If you're featuring someone with a positive outcome, make sure this doesn't happen to you."

The first step is finding just the right anecdotes for your story. "The challenge for us as reporters is to go beyond the accepted standard, such as ‘this is not a good hospital' or ‘some people have difficulty getting access to health care,'" says Ornstein. "The public knows that." Anecdotes are a way of going deeper and telling stories people don't know. Ornstein cited one feature in The Sacramento Bee about inadequate medical care in the Sacramento County jails. The reporter did extensive digging and uncovered a drug addicted transient who had a minor wound on his finger that was untended. By the time a judge and his public defender intervened, the finger had to be amputated. Similarly, when Ornstein and Tracy Weber were investigating King-Drew Medical Center in Los Angeles, one of the patients they profiled was a young girl who had been sideswiped by an ice cream truck. Even though she only suffered from two broken front teeth, a series of medical errors at the hospital led to her death. "The details of that story made it come to life," says Ornstein.

Find patients through referrals from doctors, hospitals or disease-based groups. Other good sources are consumer watchdog organizations and community or religious groups. The web can also provide introductions to patients through online patient communities, or social media like Facebook and Twitter. If you're looking for someone who died at a certain age or from a certain disease or condition, reading obituaries can help-search by name or key word. Similarly, coroner or medical examiner's offices may be willing to assist you in finding certain types of cases, such as deaths from overdoses, hospital acquired infections, or ones caused by falls or drowning. Lawsuit records can also yield the names of patients unhappy with the care they received from hospitals, clinics, doctors or other health care providers. And finally, consider using your own experiences as the spine of a story, whether it's problems with a heart scan company, or a family member's serious adverse drug reaction.

Once you've uncovered a list of potential candidates, there are several steps to take to avoid some of the pitfalls. First, explain from the start your role - you're not an advocate or on anyone's side, but you want to get at the truth for the public good. As a consequence, you may need to ask some tough questions to find out what really happened, and you may end up not using their story.

Get their medical records - all of them. "Patients' recollections may not match their own medical records," says Ornstein, and there could be a discrepancy between what they remember and what the records show. Don't take anything at face value: patients often can be confused about key details or make scientific claims-vaccines cause autism, for example-that aren't accurate. Medical records are confidential, but the patient can get them for you. Interview family members and friends to gather more information so you can piece together a more accurate version of events. And remember, lawsuits are based on the patients' recollections, so they may contain errors, too.

If there are allegations about abuses or poor care, or if it's about a complicated medical procedure, get a medical expert to review the records. Look for experts in the appropriate specialty who are considered leaders in their field and who are willing be quoted in the story. Sometimes, physicians don't want to go on the record about colleagues. Consequently, it may be easier to find a physician who practices in a different part of the country from the doctor or hospital you are investigating.

Be smart about where you find your patients. "Don't rely on people who have a vested interest, especially when you're writing about a new technology," says Ornstein. One reporter did a story on automatic defibrillators and was referred by the PR rep for the company to a woman who had been saved using this technology. It was only later that he discovered that she was a consultant for the company. "That's a good reminder to always ask about such conflicts," says Ornstein.

Finally, know the law. Provisions of the federal law called the Health Insurance Portability and Accountability Act (HIPAA) mandate that medical records are confidential and doctors can't talk to you about a patient without their consent. "Patients have to sign an authorization and in the case of children, there's an even higher threshold," says Ornstein. "Otherwise, you can be hit with an invasion of privacy lawsuit."