The following is a guest blog post from one of our contributors, Sally James of Seattle, an active observer of, and participant in, health/medicine/science-related social media. She tweets as @jamesian.
People learn about healthcare from many places: their local hair salon, People magazine, newspapers, Google and their friends. Here at HealthNewsReview.org, our daily work is unpacking all the different ways health news is reported and trying to improve those communications. Social media is a platform for both news about healthcare and related conversations between patients, clinicians, and a variety of other stakeholders. A Stanford group is partnering with an analytics company to sponsor a contest to encourage direct research into how people are using these platforms.
‘Everyone included’ at White House Event Thursday
Larry Chu, MD (@larrychu) is the founder of a conference that happens in the fall at Stanford known as Medicine X. Chu announced the new social media research initiative on May 17 in this blog post. The deadline for entries is June 17. The phrase “Everyone Included” is a trademark of Medicine X and is part of what the conference calls its guiding philosophy. Symplur, the contest co-sponsor, is a company that does analytics for social media. To follow this discussion on Twitter, use #MedX as a hashtag.
Chu is an associate professor of anesthesia at Stanford and the co-founder of the Medicine X conference. He’s also partnering with the White House Office of Science and Technology on a workshop Thursday [June 2] about including “everyone” in research and improving participation by the public in the president’s Precision Medicine initiative. (The White House workshop is about greater research participation in general and not specifically related to the contest for social media research.) You can follow the White House office at @WhiteHouseOSTP on Twitter. The workshop may be livestreamed.
Some of the questions Chu wants answered include:
He posed those questions in a video embedded below for the research challenge. The winner of the challenge will be given a free registration to the Medicine X conference, as well as the publication fee to post a research paper. General registration for MedX is $1,750. No total dollar amount is given for the prize value. Patients are encouraged to join the contest.
What about social media messages that do harm?
Matthew Katz, MD, (@subatomicdoc) is a radiation oncologist who has published in JAMA Oncology about how patients use social media in breast cancer. He does not think he’s going to compete in this challenge, but he supports the need for more research in the field. Via email, he commented that he worries about the power of social media conversations to do harm as well as good.
“We’re using powerful communication tools with global reach, without knowing whether it’s helping or harming. We know many online that are ‘believers’ in an inherent good in social media. Our ability to take health communications global has outpaced our understanding of how to interact well and safely online,” he wrote. The founder of HealthNewsReview.org, Gary Schwitzer (@garyschwitzer), has repeatedly explained the harms that can come from hyped health messages. His podcast here, for example, includes a patient describing such harm from misleading headlines about a cancer treatment. We’ve previously looked at Twitter messages from big healthcare institutions like the Cleveland Clinic and found that they can play fast and loose with the facts.
Thousands of people participate in specific disease-related chats on Twitter, and frequently these chats are credited with identifying new methods of treatment to patients who were not aware of them. Janet Freeman-Daily (@JFreemanDaily), a Seattle lung-cancer patient, has written about her own discovery of a clinical trial via social media. She will be speaking to an audience at the giant American Society of Clinical Oncology conference later this week about social media use by patients. Janet is one of the moderators of a chat known by the hashtag #lcsm on Twitter, where lung-cancer patients gather weekly. Janet said she did not know whether anyone from the #lcsm community might enter the MedX contest.
If you would like to read more background about patients on Twitter, I’ve blogged here about the National Cancer Institute and chats on the film, “The Emperor of All Maladies,” and here about patient chats on Twitter in general. Feel free to leave comments below or links to other resources