Most of us know the value of social media for patients. People living with disabilities and illness have been using various forms of it – email/web groups, forums and chats – since the text-based internet days. Now we can add blogs, Twitter, Facebook and myriad other social media to that list. A recent BBC article cited a great example of a young woman with cystic fibrosis (CF). Social media was a boon to her since it was the only way she could meet others with CF, because meeting in person risked cross-infection.
This obvious use of the internet to socialise and support has changed the face of living with a health problem forever. However, it goes further. Imagine you have been diagnosed with a life-threatening illness and are placed on a waiting list to see a specialist. Imagine the various investigations and time passing …. For Dave deBronkart, who has become a leading light in participatory medicine, social media was the difference between death and life. Given only months to live by his doctor and then waiting to be passed on to more care, he decided to take things into his own hands. He began chatting with other patients online and quickly found information that his doctor had not known about.
What to do after you think your time is up, in other words. Doctors simply don’t have the time to read everything that crosses their desk, whereas their patients have a vested interest in reading everything they can, as quickly as they can, and zoning in on the specifics of what ails them. Dave was fortunate. He was able to get the ear of sympathetic doctors and he turned his prognosis around.
“I suspect that the future relationship between providers and
industry will revert to involve more trust and, ironically,
more of a personal connection despite the digital medium. As
the world goes virtual the hunger for real connection will
grow. And those who reach us in some personal way will hold
market advantage over those who don’t.”
Doctor_V, MD, Digital Thinker
While it is easy to understand what motivates patients to become e-patients, it’s somewhat more complex when it comes to the role of healthcare providers online. Bryan Vartabedian is a self-named Digital Thinker, a paediatric gastroenterologist at Texas Children’s Hospital/Baylor College of Medicine. He confesses that doctors are guilty of “anemic digital adoption.” There are several reasons for this; according to Bryan, and these include: 1) physicians naturally have issues with transparency/image 2) they haven’t got time (it takes two to five years for doctors to read about and implement new practices) and 3) they have concerns over liability and privacy.
While doctors have seemingly valid reasons for not wanting to be online and dive into social media, there is every reason for them to be there. We can take autism and vaccine as our example and look at the loud online buzz. If only a handful of the thousands of paediatricians across the globe provided reliable content, how much better informed the public would be. Patients, doctors, nurses and healthcare facilities need to get online and do it often. They need to stop wanting anonymity if they take the plunge: “Go and be real so that your voice can be credible.” says Bryan. Healthcare practioners also need to stop worrying about what their patients are reading, and look towards providing the material themselves. Bryan tells a poignant story of breaking some news to the parents of a little girl. One or two sentences into his phone call, the parent interrupted saying: “You don’t need to go any further, doctor. Just spell ‘eosinopil’ if you would.”
Doctors need to stop talking about making patients part of their own healthcare decisions and deliver the goods. Doctors already buy smart phones. They need to be encouraged to use them and win audiences. Engaging people with reliable and provocative information, with a good mix of the instructional and personal, goes a long way to helping all of us live healthier lives. It’s called Health 2.0 and it’s time to switch!
Virtual doctor visits (over Skype and webcam), online access of medical records for both doctor and patient, smart phone and Twitter notifications of emergency room waits… all of these already exist,although only amongst the most innovative, such as the Mayo Clinic, which even has its own Center for Social Media. Phil Baumann is a registered nurse with a background in enterprise accounting and treasury operations. He blogs about how technologies influence us and is the founder of Health Is Social. He believes that the marriage of hardware and software has revolutionised medicine and envisions in our future things like an inhaler for an asthmatic that would include GPS technology – alerting the asthmatic when he approaches a high pollution/pollen area. Health, he says, is innately social. “We believe, at its heart, that health is a social process. Emerging technologies like social and digital media are giving patients, doctors and nurses new ways of communicating and collaborating.” We can’t argue with that.
As for the need for community management and moderation in all of this, I have (perhaps oddly) said nothing on the matter so far. It seems self-explanatory. Those of us who manage and moderate communities know that the rules aren’t really any different – every community has its own set but they’re quite similar. We do, however, tend to be mindful of litigation, current research and the users’ need to vent, even against each other. It’s a privilege to be witness to intimate battles and courageous journeys. We can be the newsgivers, the ears, the voice and the broadcasters. We’re a patient lot (!) and we know that we can be the vital liaison between the caregivers, the patient and the public.
A few links that you may find useful:
Social media health trends (Mashable)
To follow health in social media on Twitter, search #hcsm
Janice Pearson is a senior member of the moderation staff and is a member of the community management team at eModeration. She is educated in pregnancy, childbirth and women’s health issues. Janice has been published numerous times in North American magazines and online in the fields of technology and women’s health.