2016 Patient Advocacy Summit: How to Tell Your Story

September 23, 2016

Daniel S. Levine

Rare disease patients have such powerful stories to tell that they are capable of raising money, advancing legislation, or accelerating research. But people who are not used to talking to reporters don’t always know how to best tell their tales.

During the Global Genes Rare Patient Advocacy Summit, Chris Smith, president and CEO of SmithSolve, drew from his 25 years of healthcare communications experience during a workshop to help attendees tell learn how to tell their stories to the media.

As an example, Smith pointed to drawings made by parent advocate Lisa Schill’s son, Max, who has a rare disease. Max made drawings for members of the House Committee on Energy and Commerce in support of the campaign for the 21st Century Cures Initiative. The images were posted to social media by Congressional offices and rare disease groups also pushed out the images to raise awareness for the legislation.

“A picture drawn by a child can break through the noise in a way that official news releases never do,” Smith says.

To be effective in using your story, Smith says to begin and end with a goal in mind. He also suggests that in terms of a problem, solution, and a call to action.

At the end of the interview, when a reporter asks if there’s anything else you would like to add, use that as an opportunity to once again emphasize your call to action, whether it’s to donate money, participate in an event, or support a bill.

When reaching out to reporters, Smith suggests to “create moments.” Reporters generally look for news hooks and want to have a reason for why they are telling a story now. In one example, a girl with Batten disease used Father’s Day raise awareness about her illness by talking about all the things her father had done for her as an advocate with doctors.

Before pitching your story, do your homework. Pay attention to the types of stories outlets you’d like to reach out to run your story, see which reporters have covered similar stories, and call and ask who covers health stories or community events.

Think about the range of questions you will be asked and have a sense of how you would answer them. Before an interview begins, try to gauge the knowledge of the reporter and understand who his or her audience will be.

Among Smith’s key things to do during an interview is to get your messages in early, be authentic (no need to memorize answers), and be concise while avoiding “yes” or “no” answers. Also, help the reporter by providing other sources, such as doctors, patient organizations, or researchers.

Things not to do include speaking off the record, answering hypothetical questions, and over communicating by providing more than three key messages.

Remember that you can set the ground rules before talking to reporters. You may not want to make your life an open book. You may not want to allow your children to be filmed, but may be willing to allow their pictures to be used. Be clear with the reporter about whatever boundaries you may want them to respect.

Having access to someone directly affected by a disease gives life and emotional depth to a story and brings home the personal impact. One way to deliver such nuggets, is to remember that moment when your life changed.

“We don’t remember days, we remember moments,” says Smith. “This is the most important thing I tell whether it’s a CEO, or if it’s a mom or if it’s a researcher. You can convey a point with a lot more emotional credibility if you tell the story of that moment when you first recognized it, first heard.”


Daniel Levine is the host of RARECast, a weekly podcast for Global Genes. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts.


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