By Liz Szabo
Everyone wants to have “real people” in their medical stories. Broadcasters often can’t get their stories on air without one.
Pharmaceutical companies know this. That’s why, when they prepare for a mega-meeting, such as the American Society of Clinical Oncology, they will happily provide you with a patient to interview: one who is healthy, white, middle-class, photogenic and extremely grateful for a drug that has saved his or her life. Of course, patients referred by drug companies aren’t usually representative of the larger patient population, some of whom have gotten no benefit from a new drug, and some of whom have died. So, featuring patients referred by drug companies can lead to a misleading article.
It can also prove embarrassing. Last year, during the annual ASCO meeting, two news organizations reporting on an experimental drug featured the very same patient, with nearly identical photos of the woman in her quite lovely dining room.
So how do we get around this problem?
Asking the university- or hospital-affiliated author of a new paper won’t help. They often turn to the drug company for patients, too.
That’s why I’ve come to adore social media. Getting to know patient advocates on Facebook, Twitter and other sites allows me to talk directly to real people, with no censorship.
How do you get started?
Don’t send out a general tweet asking for help
For example: “Has anyone out there taken TDM-1?”
This broadcasts what you’re working on, so other journalists can steal your idea – and your contact. And it just lacks sophistication. I turn to this strategy only when desperate, i.e., it’s 8:30 p.m. and the wonderful folks at some government agency just dropped a doozy of an announcement.
Instead, start early.
Weeks or months before you’re going to cover a meeting, begin cultivating social media sources the way you would any other source: by introducing yourself, getting to know the most connected and influential people, and by going where they hang out.
Put in a little legwork ahead of time, and it could pay off spectacularly when you’re on deadline, because you may have just the source you need at your fingertips.
Do you expect to write about melanoma? Find some melanoma patients sites on Facebook and apply to become a member. Explain that you want to learn about the issues that are most important to people with melanoma. I guarantee that you will learn a lot.
The organizers of these groups often know lots of people, or can share your request in a private email or Facebook group.
One caveat: No single patient is ever truly representative of an entire population. The fact that they are alive to talk to you shows that you’re drawing from a biased sample. Trial participants who’ve already died won’t be able to tell their stories, which could be the most important stories of all. Sometimes, you can find their families to speak for them. Many people with cancer today write blogs. These open-access records may live on months or years after the person passes away. While you probably wouldn’t quote from this sort of blog, you can learn from it.
Even with these limitations, the people you meet this way won’t be hand-selected and screened by Pharma.
And remember: keep in touch with your sources.
Follow his or her progress. Let’s hope and pray they all do well. But even a patient doing spectacularly well today may develop serious side effects later. These patients could provide an early warning sign of a serious complication that you might not otherwise hear about.
Monitor key conversations.
When the Susan G. Komen for the Cure defunded Planned Parenthood, Twitter went nuts. With a little searching, I quickly discovered the most popular hashtags, which included key words such as #occupythecure.
By following this hashtag, I found a woman who mentioned that her mom’s stage 3 breast tumor was found only through Planned Parenthood. I contacted the woman with a public message, asking her to DM me (contact me privately). Within a couple hours, I had talked to both her and her mother, and gotten a terrific “real person” quote before my print deadline.
Follow thought leaders and key influencers.
I know a breast cancer survivor who is so well connected that, I’m convinced, if you’ve ever had cancer, and you have an Internet account, she knows you by name.
How do you get started? Go to Twitter and search for suggestions of people to follow on whatever you cover, from cancer to AIDS or infertility. Follow them. Read their Twitter feeds. Then, follow the people they follow. Read those Twitter feeds. And so on. They call this social networking for a reason.
Are these folks buzzing about a particular issue? Are they organizing a Twitter chat? If so, join in.
How do you get people to follow you?
Tweet about an issue that’s important to them. But don’t just pontificate. Provide a service. Include links to your stories, or stories by other great reporters. Link your followers to useful databases – clueing them in to cool data from the Centers for Disease Control and Prevention or National Institutes of Health that they may not know about.
Feel free to editorialize, within limits.
For example, a couple years ago, I was preparing to write a story about the enormous increase in prophylactic double mastectomies – women with cancer in one breast who decide to have doctors remove both breasts, even though one is cancer-free.
At the same time, actress Wanda Sykes underwent this very procedure for DCIS, which many experts describe as a pre-cancer or even just a risk factor for cancer. Unless she has some risk factor or gene mutation that she hasn’t disclosed, a double mastectomy for a non-lethal cancer seemed like an extreme move.
I tweeted a link to the USA Today version of the story, preceded by a single word: “Wow.”
That one word touched a nerve.
A breast cancer survivor quickly responded, noting, “I had a double mastectomy for DCIS and I’m glad I did.”
Wow.
That woman, Lisa Adams, became a fantastic source – and the lead in two of my eventual stories.
Our relationship didn’t end with that story.
We still follow each other on Twitter, and I continue to read her blog. She’s referred me to other breast cancer survivors for additional stories.
By following survivors like her, I’ve learned about great stories: How women with metastatic disease often feel ostracized by the wider breast cancer community, or the outrage felt by cancer survivors at the new trend of sexualizing breast cancer.
Mine Twitter and Facebook for story ideas.
One reason that I was able to zero in on key, Komen-related hashtags so quickly is that I had been following, and chronicling, widespread discontent with Komen for years before the Planned Parenthood controversy.
When I first started using social media, I could point to individual story ideas or sources that came from Twitter. Now, it’s rare for me to write a story without using information or sources from social media. I can’t imagine reporting without it.
New to Twitter? This tip sheet will help you master the basics.
Liz Szabo has covered medical news for USA Today since 2004. Her work has won awards from the Campaign for Public Health Foundation, the American Urological Association and the American College of Emergency Physicians. Szabo worked for the Virginian-Pilot for seven years, covering medicine, religion and local news.
