Crowd-Sourcing Health: The Intersection of Social-Media and Medicine

In a world where free Wi-Fi and portable handheld devices give us access to a technologically enabled collective-consciousness, practitioners and patients alike have easy access to an unprecedented amount of published research, expert opinion, and anecdotal experience.

Along with all of that is a deluge of advertisements, paid product placements posing as unbiased information, unqualified advice and even outright misinformation. The democratization of health information facilitated by the internet is both a blessing and a curse. The challenge—and the beauty--of the ever-evolving nexus that is the Internet, is to find ways to use this tool effectively.

As a practitioner, how do you involve yourself in this constantly changing infosphere to best serve your community? It's an important question because for you and your patients, the internet can be either a tremendous support for better health or a massive time-waster and source of confusion.

Crowd-Sourcing Health

Mathematician John Allen Paulos aptly described the problem presented by the World Wide Web when he said, "The Internet is the world's largest library. It's just that all the books are on the floor."

What began as a means of sharing information between the US government and top research institutions, has grown to be the largest information warehouse in human history. Naturally, navigating through this vast information landscape can be a daunting (if not impossible) task for even the well–equipped and savvy Web enthusiast.

So with the rising need to contextualize and navigate this growing cluster of information, the internet has evolved into a second generation or "Web 2.0," characterized by user-centered websites, applications and networked systems that facilitate our search for information and encourage its co-creation.

Examples include social networking sites like Facebook and LinkedIn; rating–supported sites like Yelp and Amazon; and a host of sites with "liking" or voting systems. There are also thousands of mobile applications that foster human interaction and information sharing via smartphones and other handheld devices. These systems encourage the emergence of new information purely because of the interactions they facilitate.

The function of the Internet, therefore, has truly shifted from being a locus of static information, like an electronic version of a printed book or news article, to one for vibrant real–time discussions. We're in a phase where the people engaging online actually provide both a context for existing information, and shape the information itself.

Because Web 2.0 provides opportunities for collaboration online, the information now available is ever–changing, and emerges from multiple, ongoing, and real-time authorship. For online health information, this means that both practitioner and patient can, nay must, work to tailor-fit the information they find online to better meet personal needs and requests.

In a tangible example of how Web 2.0 has impacted online health information, just consider this sort of conversation between a patient and his or her practitioner: The practitioner has listened to and documented the patient's symptoms and experience, and subsequently offers an array of treatment information. The patient then posts the key points of this offline interaction in an online forum, blog or ratings-based site. This same conversation is then visible to anyone with a computer and an internet connection, anywhere in the world.

A third party, having read this original communication, can also comment alongside that information, creating a richer context to the original two-pronged conversation. If each of the original conversation participants---the practitioner and the patient—are themselves consulting numerous sources of online information, it becomes clear how the internet has made the basic medical consultation ever more comprehensive and contextualized.

The implications of "crowd-sourcing" health information are massive.

Participatory Medicine

It used to be pretty simple: you were the doctor, with access to a world of highly technical, sometimes arcane information about which your patients knew little. Today, you're still the doctor, but your patients have access to almost all the information you do.

Patients these days are reading blogs (written by other patients or practitioners themselves), PubMed articles; they watch health videos, participate in online medical forums and support groups; and they rate health care facilities and practitioners. In doing so, they are educating themselves and engaging with medical information in a new, more personalized way.

A recent Pew Internet Study published by the Journal of Participatory Medicine found that people believe their specialist or MD to be the best resource in 2 categories: Diagnosis and Advice on Management After Diagnosis. But for another 10 situational categories, they rated online support groups as being the best resource.

These categories included: Best In-depth Information on My Condition, Best Practical Knowledge of My Condition, and Best for Helping Me Find Other Medical Resources. Needless to say, and as studies now show, online social support for health conditions is a much utilized and coveted space that only continues to grow with increasing internet use.

Whatever you may think or feel about the notion of crowd-sourcing healthcare information, the reality is a lot of your patients are probably involved in it.

Of course, now that the information is in the user's hands, so is the onus for using it intelligently. Whether they do so consciously or not, patients who seek and share health information online are putting themselves in the role of responsibility for discernment of credible and true information. This is one of the many places where you as a practitioner can help, and why you need to be part of the online conversations.

Becoming a Web-Wise Practitioner

Here are some possible ways to get started developing an online presence for yourself and your practice.

  • Have a Website: The moment someone searches for you online, it is best if they find a website you created. Build a website that truly reflects your values, your clinical approach, and your practice philosophy. Then link out of this site to any other sites and other practitioners with whom you are affiliated. It is a good idea to have a "Referrals" tab on your site. If you feel it is appropriate, you can ask other practitioners to link to you as well, or you can trust that the favor will naturally be returned. Cultivating good will and authentic interactions online is just as important, and just as transparent, as such endeavors offline.
  • Start Blogging: A blog is still a great way to give voice to your practice, your ideas, your passions, your questions and your general musings. It is one step beyond your website through which patients (or potential patients) can see if your ideas and persona align with theirs. An MD who blogs about the latest nutrition findings or the benefits of complementary healing modalities will attract a different clientele than one who blogs solely about the newest pharmaceutical interventions. Whatever your specific clinical interests, if you put them out there, you'll attract patients who share them. Blogging websites like wordpress.com and weebly.com, make it very easy to design, publish and tag your blog articles so they are visually engaging, and searchable.
  • Yelp Your Practice: For better or worse, people search for and rate practitioners just like restaurants on www.yelp.com, a ratings-based platform. Let people know that your practice is on Yelp by stating so on your own website, and also offline in your office. Ask loyal patients if they would feel comfortable posting a review of your practice. Just make sure the post doesn't end up sounding like a sales-pitch.
  • Join Question & Answer Communities: www.quora.com is a very high quality Q/A site, offering expert answers to people's posted questions. Quora is a great place for you to help others and exhibit your "thought-leadership" by providing answers to health questions—of which there are many. You can also link your answers back to your own site, but don't let this be your only reason for joining Quora or your true motives will show. (Believe me, it's pretty evident when people use the site primarily for self-promotion.) Quora is a particularly good option if you don't want to get into blogging. Answers can be shorter than blog posts, and you needn't be as timely about posting entries.
  • Stay Informed: Read up on how the web continues to change and how health information and healthcare practices change as a result. Attending Medicine 2.0 conferences, reading about the latest advances in online medicine and peer-to-peer healthcare, and even watching TED talks are great ways to stay informed.
  • Avoid Spinning Your Wheels: Putting your profile on every site that aggregates practitioners' names will probably cost you more time than it is worth. Why? Because there are hundreds of "community-ratings sites" that simply list practitioner and/or clinic names, and wait for both you to come on to augment your profile and for the online community to come on and rate you. They'll all purport to be "community driven" sites, but most don't have enough active members to be comprehensive. Sites where only a few practitioners actually have ratings or comments, and those who do have fewer than 5 comments, are probably not worth your effort. When I asked a successful Silicon Valley web designer if there was a name for these kinds of aggregated community sites he replied, "I think they're called, 'Wastes of time & money.'" My point exactly.
  • Don't Try to Game the System: In Web 2.0 lingo, "gaming the system" means to falsify the presence of genuine online interactions. Common examples include: forcing, forcefully "suggesting," or even incentivizing people to rate you positively online; hiring companies to "like" your Facebook or Yelp profile; and back-linking to your personal webpage without providing valuable content to the site you're back-linking from. You wouldn't do something like this offline, so don't do it online.
  • Don't Forget Disclaimers: Writing answers to health or medical questions without references and without a disclaimer is a bad idea. The medicolegal implications of sharing medical knowledge and experience online are yet unknown. Cover yourself by citing your information and including something like the following when you give medical answers: "This information is intended as educational information only and is not a substitute for professional medical advice. Always seek the advice of your doctor before starting or changing the course of your treatment. If you think you may have a medical emergency, call your doctor or (in the United States) 911 immediately."

From "No Way!" to New Way

Peter Shark, MS LAc has been my primary practitioner for the last 2-plus years. Not only that, he also helped me immensely when it came to writing my thesis by appearing in my survey video used to determine social media's role on the perception of so-called "alternative" health information.

While Peter was willing to help me research this subject, and he has always enjoyed writing offline, as of a year ago, he had virtually no interest in utilizing social media for his clinical practice. Which was why I was amazed to hear him utter the following statement when I recently went to see him: "People don't want to interact with stagnant pages online anymore," he told me. "They want to be able to move and engage and actually interact with the information that they find out online."

"Yes Yes Yes!" I silently exclaimed in my head. Peter went on to explain he had started a blog on Wordpress (www.wordpress.com) to discuss his practice, Wood Tiger Acupuncture and particularly his experience with Amino Acid Therapy.

After just 6 weeks, he had already received a few new clients, as they'd found him when searching 'Amino Acid Therapy' online. Peter links both out of and back to his own blog, and says he prides himself on putting WebMD and PubMed citations right next to links to acupuncture videos from youtube.com.

There is an array of useful information to be found online, and it runs the gamut from material considered "researched and proven" through conventional clinical trial designs, to crowd-sourced information that is "validated" by thousands of individual experiences shared, corroborated and contested online. By putting these types of references right next to one another, Peter helps to bridge the gap –long recognized by researchers and practitioners alike--between what happens in the highly controlled setting of a clinical trial, and what actually happens in the day-to-day trenches of patient care.

Peter told me he's working to move his existing website over to Wordpress since he found it to be so user-friendly. He admits to having hired a designer to help him with the layout of his site as well as someone to teach him how to tag his blog posts to make them more searchable online.

But beyond that initial expense, he says, "The brilliance of using social media is that it's extremely low-cost as compared to traditional advertising." You're also better able to tailor the information to your specialties and thus attract people who are likewise interested in that same niche. While I wouldn't expect instant results from your new online presence, I do believe that learning to use the Internet will help you attract the people who are aligned with your vision to your practice.

It's really quite simple: Keep doing what you've always done, only now, use the Internet to display it. Continue to have authentic interactions with your patients and cultivate mutually beneficial and legitimate relationships with fellow practitioners. Know the people in your field(s) and continue to grow, learn, debate, ideate and make connections with other experts in your community.

Then, bring those authentic off-line connections and interests online through connections on your personal website, on public forums (perhaps creating a few new online-only connections) and on a few meaningful ratings-based sites.

People can see through the spam-like and fabricated information sites, and generally don't trust them. So as a practitioner you needn't be on every website that happens to list your name. What internet users do respond to is real people giving real reviews, information and advice, be this about specific practitioners or entire modalities.

So speak up about your passions, your niche, and your honest experience, and put the message in the right place online so patients seeking those topics will actually find them and find you. The beauty of the internet is that for very low cost, like-minded individuals really can connect, create, collaborate and even cure. This is the shining promise of the information age.

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Sarah Showalter, MA, is a corporate health coach who conducted her thesis on how social media influences a user's perception of online alternative health information. You can check her out at: http://sarahshowalter.weebly.com/index.html

 
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