Don’t Write Wrong

What’s the best argument for scientists responsibly communicating their findings to patients?

“We are all patients, sooner or later,” said doctor and researcher Edward Wild. And we will all want to know the latest on whatever disease we have.

For example, Wild said, when he meets with his patients who have Huntington’s disease, first they talk about their illness, and then they want to know about the latest research–and why no one tells them about it. Their family members, worried that they, too, may develop Huntington’s, read “overblown ‘cure’ research in news stories” and panic.

Wild, of University College London, moderated a roundtable session at the recent Society for Neuroscience annual meeting called “Communicating Research to Patients: A Moral Imperative for Neuroscientists?” With fellow panelist Jeffrey Carroll, of Western Washington University, Wild founded HDBuzz, an online news service for people with Huntington’s and their families.

Our main site, dana.org, makes sure all news stories have passed muster with at least one science reviewer. Many news sources do not, and it’s painful sometimes for us to watch the stories that gain traction on the Internet though they have no basis in science reality. (For example, see the “Kill or Cure?” page.) Over the years, we in the media have been blamed for all this “spin,” but a recent survey suggests that the spin often begins with scientists themselves. Writing the abstract section of their papers to simplify and to intrigue, scientists can imply that the research is more original, more stunning, more “cure” than is really supported by the data.

Scientists may not have an ethical responsibility to communicate science; they should first be doing “the best, most rigorous science you can,” said Paul Raeburn, chief media critic for the Knight Science Journalism Tracker at MIT. “Be honest in your work, transparent about it.” But as a practical matter, scientists absolutely should be reaching out. “We the public support a lot of scientific work, and we stand to reap the benefits of what you’re doing. It’s important for you to tell people what you’re doing, and we’re so fortunate that we have so many outlets” for communication, including blogs, Twitter, magazines, newspapers, lectures, coffee shops, and everywhere else.

Just giving people access to data isn’t enough, argued Theo Bloom, a cell biologist and chief editor of the open-access journal PLoS Biology. “Open access is good, but accessibility is better,” she said; the data does not transmit unless it is readable and understandable.

When they can understand it, “access to information has great value” even if it does not solve a person’s problems or cure her disease, said Jeff Carroll, whose family includes people who have Huntington’s. “The absence of good information creates a vacuum of hope…When people feel alone and uninformed, they can become radicalized,” listening to quacks and others who tout unproved therapies. “The public is my family and friends, most of whom most likely don’t have the time or access to be neuroscience majors.”

“Scientists need to tie the work [they] do into the patient experience,” said Brian Fiske, a former editor of Nature Neuroscience who now works for the Michael J. Fox Foundation. “We have a role to play beyond just the science itself.”

People at the foundation, which promotes research into Parkinson’s disease, have found that, for them, face-to-face communication works best: “Describe, explain, educate,” Fiske says. And listen: Patients and especially caregivers can often give scientists insight into a disease’s progression that could be clues to further research, as well as inspiration to keep trying.

–  Nicky Penttila

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