You must work with patients to tell a powerful story

The dramatic patient story - from the face-transplant patient on a recent 'Oprah Winfrey Show' to the first child implanted with an artificial heart - is at the core of healthcare PR. But is this well-loved approach becoming jaded?

The dramatic patient story – from the face-transplant patient on a recent Oprah Winfrey Show to the first child implanted with an artificial heart – is at the core of healthcare PR. But is this well-loved approach becoming jaded?

A few years ago, I actually had a producer reject a patient for a story because they didn't look sick enough. The lines are increasingly blurring between reporting and entertainment. The number of true healthcare/science reporters is dwindling. Some producers have difficulty understanding the difference between John & Kate +8 and a real health/science story. We have all seen “cringe-worthy” patient placements that make us wonder what PR pro was involved. Call me an old-timer, but ethics still matter. Sometimes it is the art of what you don't do that makes the appropriate placements all that more powerful.

Here is my list of top issues to watch out for:

  • Not obtaining informed consent or doing so inappropriately. Is it ethical to ask a patient to sign consent for publicity moments before a photo or video shoot? Have clear policies about who can consent patients and about the process they will follow.
  • Don't pay patients. Tell them up front that only expenses/travel will be covered. I once had a patient tell their story to the media on their own, then contact the company to work on placing the story in other outlets. The patient later asked for compensation for their efforts.
  • Be careful what you start. Patients can become hooked on media attention. They will call you daily to find out why they aren't on Oprah.
  • Don't ask a patient to do something you wouldn't do yourself. I once had a journalist ask to follow a patient on their medical appointments. I knew that some of what would take place would be inappropriate for filming, and the patient shouldn't be put in the position of saying no. A patient may not know how something will affect them, so you must advocate for them to avoid an awkward situation.
  • Media training. Patients are not paid spokespeople, but they still represent your organization. They should know what areas to stay clear of – particularly in the pharmaceutical and device arenas. A PR pro is on slippery ethical – if not legal/regulatory – slope if they say, “The patient is speaking on behalf of themselves and not the organization” when the company pitched the story, shot the b-roll, or paid for travel.

It is almost impossible to place breaking science or medical news today without a personal patient story woven in, so effectively cultivating and managing patient stories will remain part of the healthcare PR playbook. Now if I could just find a reporter that truly understands genomics.

Mary Lynn Carver is SVP of PR for St. Jude Children's Research Hospital. She spent 11 years in the pharmaceutical communications trenches in the US and London. Her column will look at healthcare PR issues and the management of that communications function. She can be reached at mary.carver@stjude.org.

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