Top tips from AHCJ 2015 conference in Santa Clara

The first time I attended an Association of Health Care Journalists conference, I tried to attend sessions back to back. I did not want to miss anything that any of these smart journalists and scientists had to say. Over the years, I have found myself spending more and more time in the hallway outside of the sessions learning nearly as much in one-on-one conversations with attendees. So what follows is a mix of ideas sparked from talks and ideas sparked from talking.

When the facts are squishy, don’t pretend you’ve found the truth. Both Gary Schwitzer, publisher of HealthNewsReview.org, and Ivan Oransky, MedPage Today’s global editorial director and co-founder of Retraction Watch, drove home the point in their talks and in conversations that false certainty hurts our collective sense of how to be healthy.

One of the biggest problems they identified in news stories and press releases is the exaggeration of the size of the effect of drug, device, diet or other intervention. That can happen when writers only show relative numbers and not absolute numbers. It can happen when journalists use causal language to describe observational studies. And it can happen when stories fail to explain the limitations of surrogate markers and endpoints. Beware, for example, the tyranny of the anecdote: stories that are dominated by a compelling human drama of a life saved by a drug or surgery.

“Reporters tell the success stories but they rarely profile the dropouts [from clinical trials],” Schwitzer said. “Why were they dissatisfied?”

Use language that illuminates. Avoid language that obscures. One of the most fact-packed panels was the one about organ transplantation and ethics, moderated by the terrific Associated Press writer Carla Johnson. On her panel, Alex Capron, the University of Southern California bioethicist – call him if something you’re writing about seems ethically fishy – talked about people traveling to different countries for organ transplants. In doing so, he broke down the different terms that are often used. He said that when he first heard the term “transplant tourism,” he thought, “That’s not about tourism. Tourism is when you go to a country to see something beautiful. These people are going to a country to get an organ and then leave.” That can have real consequences for the country where the organ donors – who are sometimes coerced or exploited – reside.

Capron noted that in countries like the Philippines, it has been found that very few kidneys are transplanted from one local resident to another, but a huge number are transplanted from people in the Philippines to people traveling from Europe or the U.S. In essence, this means that people on the waiting list for a kidney in the Philippines are being harmed by people coming into the country and taking donated organs. That’s why Capron and others use terms like “transplant commercialism,” which is defined by scientific and medical organizations in the 2008 Declaration of Istanbul on Organ Trafficking and Transplant Tourism as “a policy or practice in which an organ is treated as a commodity, including by being bought or sold or used for material gain.”

What Capron and others are concerned about is that when people from higher-income countries travel to lower-income countries for organ transplants, “it may undermine the country’s ability to provide transplant services for its own population,” he said.

Keep cultural context in mind. While I was listening to Capron speak, I heard echoes of a panel from earlier in the conference. Maryn McKenna chaired a discussion of Ebola and Ebola paranoia. McKenna created the series Today in Ebolanoia on her Tumblr page, one of the first consistent critiques of the overreaction to Ebola, including the ridiculous handling of care workers and Ebola patients being treated in the U.S. and Europe.

Dr. Michael Bell, deputy director of CDC's Division of Healthcare Quality Promotion, spoke about the agency’s response to infectious disease outbreaks around the world. He cautioned reporters to consider the circumstances of people in rural parts of sub-Saharan Africa and other regions where these outbreaks tend to quickly overtake the local health system’s capacity. He described one of the hospitals where he worked during an outbreak. “We’re talking about a shelter with no source of light, a pounded dirt floor, a bucket of water, and a kerosene generator that has not received kerosene in about 15 years. That’s a hospital.”

When foreign governments and nonprofit charities swoop in to help augment the health system, they aren’t always welcome, Bell noted. Some countries have a long history of civil wars and even ethnic cleansing, making people nervous about trusting outsiders or even people from their own central government.

“When people show up in trucks and ask you to get in so they can take you to another location, that’s not a friendly invitation,” Bell said.

Surf that rising tide of data. The most unexpected conversation I had was with Amy Jeter, a communications officer at the Kaiser Family Foundation, and Meghan Hoyer, a data reporter at USA Today.

Jeter and I were talking about our work at research organizations and how that contributes to the improvement of the health evidence base. Hoyer then raised the idea that data reporters like her find it hard to compete with the innovative ways that data are being brought to life by organizations such as the Institute for Health Metrics and Evaluation and the Kaiser Family Foundation.

Her point is: What’s the point of a journalist crunching numbers and visualizing information if it’s already been done? I raised this with a veteran health editor, and he said – I think half-jokingly – “It just dawned on me. You are the enemy. Please stop calling me.” I’d love to hear your thoughts on this.

My thought is this. Research organizations can bring data to life, showing you the possibilities and making it easier to use for those who want to dive even deeper to do their own work. I have seen countless examples of this. My institute alone houses 1.5 billion data points. There are plenty of stories still to tell from this wealth of data.

Photo by Gunther Eysenbach via Flickr.