Entitled "Seeking Social Solace: How Patients Use Social Media to Disclose Medical Diagnoses Online," the report draws its conclusions from the comments of nearly 63,000 people on Facebook, Twitter, online message boards, and personal, health-related, and news blogs. Russell Herder used "social monitoring software" to do the research, searching for particular phrases related to news of illness.
The researchers were able to do this because some Facebook users don't apply privacy settings, and all Twitter "tweets" are public. But strong privacy filters do protect the majority of Facebook pages, so the results were skewed. While 51% of the comments were posted to blogs and 30% to message boards, just 7% appeared on Facebook and 7% on Twitter.
Forty percent of the monitored comments were related to cancer. The next biggest category was diabetes (16%), followed by chronic fatigue (10%), arthritis (7%), ADHD (7%), asthma, sexually transmitted diseases, and AIDS (each 5%).
Interestingly, breast cancer received nearly as many disclosures as prostate cancer, colon cancer, leukemia, bone cancer, non-Hodgkin lymphoma, lung cancer, skin cancer, pancreatic cancer, testicular cancer, and brain cancer combined. The researchers noted that women use social media more than men do and that there are more online resources and destinations for breast cancer than for other cancers.
The report argues that people go online with their diagnoses to seek emotional support, either from family and friends or from others who have the same condition. The researchers cite a Pew study indicating that 18% of U.S. Internet users have gone online to find people who have experienced similar health issues.
Beyond that, they observe that the tendency of newly diagnosed patients to share this information provides an opening for healthcare organizations. "Given the growing demand for online access to health-related information and support, hospitals, clinics, and organizations should ensure they are providing the social media and website resources their patients and prospects are seeking."
In an interview with InformationWeek Healthcare, Brian Herder, executive creative director of Russell Herder, expanded on this theme: "There's real value to the patient to be able to provide more effective emotional support platforms. But that's an undeveloped area with regard to social media. So we're saying there is an opportunity to begin to offer emotional support immediately upon diagnosis, as opposed to further on in the treatment process."
Herder added, "Support groups on the Web aren't expanding as fast as cancer diagnoses. That's an opportunity for a healthcare network to step in and begin to develop those support tools."
He cited the year-old Mayo Clinic Center for Social Media as an example of a provider-sponsored social media platform. The Center's online community, which on July 5 extended its reach around the world, is free and open to anyone, whether or not the person is a Mayo Clinic patient. It features content from Mayo's YouTube channel, links to news stories about medical advances, and a discussion forum where patients with similar conditions can contact one another.
Despite the promise of social media for creating a new kind of provider-patient dialog, physicians and nurses are wary about participating in them with their patients. While many medical professionals use Facebook and Twitter personally, some fear that patient confidentiality may be breached if they "friend" or are "friended" by patients on Facebook or communicate with them through other online media channels.
Herder admitted that this can be a barrier. But he predicted that new solutions will emerge as social media evolve. For example, he noted, "Facebook is adding new features that will make it much easier to form select groups and platforms."
The Healthcare IT Leadership Forum is a day-long venue where senior IT leaders in healthcare come together to discuss how they're using technology to improve clinical care. It happens in New York City on July 12. Find out more.