Is It all Talk? Healthcare Social Networking

Patients have embraced social networking tools that allow them to share information, offer support, and compare healthcare experiences. Physicians should also use these tools to connect with their patients and local communities and provide general medical information.

Healthcare social networking has made impressive inroads into the mainstream, as like-minded folks find each other online and chat about their passions. From politics to personal, from professionals to patients, the Internet has exploded with people talking about their health and healthcare. Perhaps the economic downturn has rekindled peoples’ appreciation for those things that make life worthwhile—our families and communities—and refocused their interest in improving their health. I know from personal experience that a great shock can help you value what you have more—I recently successfully resuscitated an acquaintance’s child from near drowning and have been hugging my children every chance I get. I see friends reacting to the economic downturn in a similar fashion, reinvesting in their health as they watch their 401(k) and housing values shrink. Many of them are participating in online discussions as part of their investigations into how to improve their health.

President Obama’s proposal to overhaul the healthcare system unleashed a torrent of activity on e-mail lists, blogs, Facebook, and Twitter as citizens think that this time, something may really change. What’s amazing is that this energy has not been unique to the online space. You know that people are really worked up when they vote in record numbers and when large numbers of citizens show up to support or heckle in town hall meetings. This shows how effective online organizing can be; we’ve crossed the chasm from silly flash-mobs to impacting politics-as-usual. Maybe healthcare social networking isn’t just all talk.

Connecting online

Social media and social networking are not only about politics; they can also be about actual medical care. As people use social networks to ask about health, they find others with the same conditions, and at the same stage of treatment. Most folks are asking about what they can expect in terms of prognosis and possible complications. People tend to talk about common illnesses in public spaces like blogs and Facebook, but for more complex conditions, some patients often prefer private e-mail lists such as Yahoo Groups, where they feel more secure to reveal details. Others get very specific in public forums about how a particular treatment or medication could help them with their symptoms. Some patients choose to record online diaries that contain detailed data about their treatment and response, through online resources such as Google Health, Microsoft HealthVault, PatientsLikeMe, and personal health applications at MedHelp. With the latter two, records can only be viewed with the user’s consent; information stored in Microsoft HealthVault and Google Health is completely private.

The healthcare social networking format that I see used most often is quick updates from friends on their Facebook or Twitter pages announcing that they’re sick, which prompts other friends to offer comfort and suggest remedies. I’ve taken to commenting as well, offering suggestions on what friends can do at home to help with colds and other minor injuries. This is the same kind of health education you can find from books like the , or iPhone resources such as Medzio, but tailored specifically to what my friend has said online. I don’t practice medicine online—I don’t diagnose or prescribe or tell them what to do. I offer options based on their symptoms and point out things they should be more concerned about. It’s like what I imagine happened when our communities were much smaller and folks knew their local doc and asked quick questions at the grocery store or at church. Now, it happens online with more depth in places like the “Expert Forums” at MedHelp.org and at Yahoo Answers, where you can ask physicians these kinds of questions, sometimes for a fee. The great thing is that all of these conversations are archived publicly, enabling anyone with these conditions to benefit from reading about them.

I see the most questions of this sort in private e-mail lists, such as the Palo Alto Menlo Park Parents Club, where more than 4,000 parents with children up to age five ask each other about local providers and how they care for certain illnesses. These parents with kids younger than elementary school age don’t yet have PTA networks on which to rely, and many of them have recently moved to the area and are looking for testimonials from like-minded parents. As providers realize that their reputation can be made or broken online, they’re starting to engage and respond to questions and complaints in these online venues. My own experience is that parents come and seek me out for urgent care since they know that I’ve been open online and am trusted by that community.

Spread the word

Healthcare social networking can be particularly effective in getting the word out about hot-button public health topics. Information about H1N1 (the artist previously known as “swine flu” before being hog-tied), has flowed so much more freely than information about SARS did seven years ago. This time, the CDC updated its website regularly and provided webinars and conference calls for physicians and the public. Even local health departments started using Twitter to tell folks about the rapidly changing response. From this information, local schools and parents could understand the real risks involved (not terrible to date, thank God) and avoid further school closures and panic. I tweeted and used my Facebook updates to share guidelines for when it is appropriate to come in to be seen for urgent care, since so many people were coming in with very mild symptoms without fever, or with no symptoms at all, just because they’d recently traveled to Mexico.

Using social media to spread the word about public service announcements is particularly potent. I recently posted a shocking video depicting a gruesome accident due to texting while driving. In just a few minutes, hundreds of my friends viewed it, and a dozen commented and reposted it to their own friends. I connected with a fraction of the millions that have viewed it on Fox TV, but in a much more personal way. A fellow physician commented that the video was “so 20th century. Nowadays, we should say ‘Don’t tweet and drive!’”

Nonprofit engagement

Health nonprofit organizations are also engaging the social networking enthusiasm of their members. Though applications like Facebook Causes and Kiva allow for direct cash donations, you can make a greater impact by getting the word out about an organization’s message through online handouts, photos, YouTube videos, and invitations to events and fundraisers. The Leukemia & Lymphoma Society’s Team In Training program has been especially effective in engaging supporters through social networks.

A day doesn’t go by without a local chapter of a nonprofit inviting me to a meeting, training, or fundraiser. To prepare for a debrief for the families who witnessed my resuscitation of a child from near drowning, I’m relying on online materials from Johnson & Johnson and Kidpower in order to encourage parents to watch their kids more safely and empower their kids to stay safe in the water. I haven’t even moderated the discussion yet, and parents are commenting enthusiastically online in anticipation of our meeting.

Have some fun

Exercise video games are a really fun way to use healthcare social networking. I may not have time to hit the gym most days, but I always seem to find time to play my Nintendo Wii, whether it be Wii Fit, EA Sports Active, Punch-Out, or just to compete to be the biggest loser with Jillian Michaels Fitness Ultimatum (God knows I need to lose a few...). Even if no one else at home wants to join me, by becoming online “buddies” with other Wii-owning friends, I can feel like I’m part of a larger exercise community. It’s more fun working out with EA Sports Active with one of my kids, but seeing friends working out seems to kick my butt into gear more effectively. Wii Fit, which focuses on improving balance rather than increasing aerobic endurance, can help elders who are at risk of developing balance issues resulting in falls and possible hip fractures. I dream of a future where elders not only chat about their golf handicap or how well their doubles game went, but also become Wii buddies and brag about their low “Wii Fit Age.”

New iPhone applications also offer an easy way to track your fitness goals and show your friends how fit you’re getting. I’d like to see iPhone apps that use the accelerometer in the iPhone to track your exercise.

Academics, however, are expressing some caution with regard to social networking and personal health information. In an e-mail to students and faculty of Harvard Medical School, Dean for Medical Education Jules Dienstag wrote: “Caution is recommended . . . in using social networking sites such as Facebook or MySpace. Items that represent unprofessional behavior that are posted by you on such networking sites reflect poorly on you and the medical profession. Such items may become public and could subject you to unintended exposure and consequences.” For physicians, it’s clear that you should only practice medicine online through HIPAA-compliant private and secure portals that allow you to e-prescribe and provide care that is linked to your EMR, like we do at Palo Alto Medical Foundation. What’s not clear is how your other public expressions, health-related or not, reflect on you. I only post things online that I’d be happy for anyone to know about, even when posting in a purportedly private place like a closed e-mail list or with Facebook friends. You never know who could copy some incriminating photo to send to your boss. (Not that I participate in any activities I want to hide, of course!)

With the anticipation of increased competition in the wake of healthcare reform, I believe physicians will have to engage online and become more transparent. An excellent example of what I believe to be the future is www.askdrwu.com, the website of surgeons Drs. Calvin Lee and Tammy Wu, who publish their statistics so you can see their experience and success rates. Educated patients will increasingly demand to know complication rates, and will spread the word about great surgeons who embrace transparency like these two old college friends of mine. The future looks bright for patients in terms of learning about safety and quality, and healthcare social networking will be a central part of that future.

Dr. Choi is an MDNG editorial board member, partner at Palo Alto Medical Foundation Urgent Care, and adjunct clinical instructor in internal medicine at Stanford Medical School. Connect with Dr. Choi at www.facebook.com/enochchoi, www.twitter.com/enochchoi, and www.linkedin.com/in/enochchoi.