It used to be that you would visit your doctor, receive a diagnosis and let nature take its course.
These days, in addition to routine doctor visits, many patients are taking matters into their own hands and using social media to help direct their medical journey.
“It’s all about empowerment,” said Shwen Gwee, vice president of digital health at Edelman. “Patients used to rely on their doctor to seek information. Now, they’re finding [online] communities that are related to the disease. They’re doing this because they can’t wait for the doctor. They’re living with this disease, and they need to find the answers.”
Gwee mentioned a recent medical meeting on diabetes. Like any other professional convention, it brought together physicians carrying on scientific discussions.
But the meeting also had many sessions with e-patients (Internet patients), who came with an agenda: To present their own clinical data.
“Patients are becoming a big force in the whole health care movement. They’re running their own trials,” Gwee said.
Gwee saw this coming.
Before joining Edelman, he spent several years leading digital strategy and social media with Vertex Pharmaceuticals, where he focused on new and social media, Web 2.0, and Health 2.0. Gwee also led the company’s digital strategy for commercialization, which included launching the corporate Twitter account and digital disease education campaign that utilized YouTube and Slideshare.
Social media is changing the way patients are managing disease. It also gives them a voice for their real world research.
Sites that have paved the way for e-patients include e-patients.net, PatientsLikeMe, and Facebook. Then there are the apps – glucose and blood pressure measurements, and pregnancy, calorie and disease trackers.
Even the government is involved.
Now in its third year, the Health Data Initiative of the U.S. Dept. of Health & Human Services and the Institute Medicine is aimed at helping consumers and communities get more value out of the nation’s health data.
The third annual Health Datapalooza recently was held in DC with 1,600 innovators.
“Imagine a scenario where a patient, from her mobile phone, can find the best possible health care provider and securely book an appointment; where she and her doctor have the latest treatment information at their fingertips; and where this information helps improve or even save her life. This scenario, and many others like it, is now being brought to life by entrepreneurs and innovators leveraging the power of data to improve health and health care,” said the Open HHS blog.
This really is only the beginning.
Ed Bennett, director of web and communications technology with the University of Maryland Medical System, used to keep a list of all the current social media platforms that hospitals are using.
He hasn’t updated the list since Oct. 2011 and that’s only because it requires huge upkeep for what started out as a personal project. At the time, if patients went to the Internet for information, a couple likely suspects popped up: WebMD and Mayo Clinic.
Hospitals frankly weren’t in the game. But the tide was turning.
By last October, Bennett found that 1,229 hospitals were using social media.
Out of those 1,229 hospitals:
- 1,068 hospitals had Facebook pages
- 814 hospitals were on Twitter
- 575 hospitals had YouTube channels
- 150 hospitals had blogs
“People want their doctors and hospitals to be online,” Bennett said. “Hospitals should want to be in these spaces so they know what the community and patients are saying about them.”
He said the flipside is that patients and consumers are looking for trusted health care information.
“They’re talking with each other, they’re talking with their network, Facebook and Twitter … anytime a hospital or doctor who has some credibility can post information, now you’ve fulfilled a need that those folks are looking for,” Bennett said.
Christine Cube is a media relations manager with PR Newswire and freelance writer. You can follow her @cpcube.
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