HealthCare SocialMedia Review #2: The Privacy and Security Edition

Welcome to the latest edition of the HealthCare SocialMedia Review, the blog carnival that's all about health care social media. Today we take a look at some of the privacy and security issues relevant to the medium, and at some other current and topical posts from around the blogosphere. But first, pour yourself another cup of coffee, put your feet up, and have a listen to a lighthearted ode to an emblem of secrecy from an earlier age:

Tell some folks you have a secret, and they'll be all over you, cajoling it out of you.

When my late grandmother was an irrepressible little old lady in her late 90's, she would chat people up wherever she met them, and folks would invariably ask her how old she was.  She would smile and respond: "Can you keep a secret?"  As her next victim leaned in, nodding his or her head, she'd let loose the zinger: "So can I."

Responsible users of health care social media understand that a juicy anecdote can make a point far more effectively than a dry textbook recitation of facts and figures, but we also appreciate the need to make sure, sometimes, that "the names have been changed to protect the innocent," the need to keep some things secret.  This imperative exists in a relationship of dynamic tension with the need to share information in order to promote better understanding of disease and health at both the individual and population level.  Neither is an absolute; both need to be observed, and each has its exceptions. Welcome to the exciting world of health care social media!

Last week marked the first edition of the TEDMED conference in its new home, and one of the TEDMED talks highlighted this tension by essentially posing the question: Would you join the Facebook of medicine?  Leslie Saxon wants to "get 8 billion heartbeats on speed dial" via everyheartbeat.org, bringing the Quantified Self movement to everyone, and her message was heard loud and clear across the pond by 3G Doctor, who blogged about her talk.  

Phil Baumann finds the prospect to be creepy.  

Mark Browne has another take on the QS approach, and the way in which patients may need to be engaged in their health care, inspired by a Google Street View car sighting.  (Let's assume the Google Street View car isn't listening in on patient data transmissions, though.)

Regina Holliday was at TEDMED too, sharing the action through her painting, and she gives voice to her art on her blog; a painting of hers from this conference is explicated through a post about spit. (Disclosure: The HealthBlawger is a member of The Walking Gallery.)

It's nice to see a new generation grappling with the issues raised by the use of social media in medicine. Medical student Emily Lu has a post up at KevinMD.com on the ethics of social media use in medicine – she offers more questions than answers, but the questions are key ones that demand our attention. As we work towards answering these questions for a new generation, an older generation (not that old), in the person of Bryan Vartabedian, says that when it comes to doctors and social media, the sky is not about to fall anytime soon. 

Physicians and patients are often the focus of discussions about health care social media, but other health care professionals are, of course, using these tools as well. Barbara Ficarra highlights their use by nurses, and calls attention to a nursing tweetchat (#APRNchat … not to be confused with #RNchat).

Most of you have probably heard of Pinterest by now, and maybe some of you are using this platform. Marie Ennis O'Connor points out the good and the bad, and suggests (man, I love having a non-lawyer say this) actually reading the Terms of Service.  

For anyone considering dipping a toe in the health care social media waters, a top-of-mind question is always: Is it worth the time and effort?  At Walking the Path, Fard Johnmar suggests that ROI isn't the right metric, and that there are other ways to measure the full economic benefits of digital health content.

Pharma has a continuing love-hate relationship with social media, and last week, Boehringer US posted social media guidance for employees — on YouTube.  Kinda cheesy feel to it, IMHO, but it distills it all down to four points: (1) You are responsible for your behavior, (2) Understand the tools, (3) Think about your audience and (4) You are our eyes, ears, and voice. 

If we're looking for succinct, accessible policy statements on the use of health care social media, then personally, I prefer the 12-word social media policy of Dr. Farris Timimi, Medical Director of the Mayo Clinic Center for Social Media (disclosure: I'm on the Center's advisory board):    

• Don’t Lie, Don’t Pry
• Don’t Cheat, Can’t Delete
• Don’t Steal, Don’t Reveal

(You might also want to check out this old chestnut, from Dan Hinmon of Hive Strategies and your humble HealthBlawger: 9 No-Nonsense Rules to Ensure a HIPAA-Compliant Social Media Strategy.)  

Responding in part to the FDA's issuance of incredibly limited social media guidelines, Laurie Gelb offers some thoughts on a way forward for pharma and social media on The Health Care Blog.

While we're on the subject of social media guidelines, be sure to check out the HIMSS social media workgroup white paper posted on the HIMSS blog with a call for comments and a nod to Lee Aase, Director of the MCCSM.

Aside from the do's and don'ts, U.S. health care organizations need more work in the whys and wherefores department.  A recent study shows that in the US of A, health care organizations use social media mostly for marketing, unlike their counterparts in a number of other countries, where use is more focused on communication — among providers or otherwise. (Of course, our market-based health care economy may have just a little bit to do with that focus, no?)

Speaking of the market …  "Free" is never really free, and we pay for some online tools by exposing ourselves to ads.  Context-sensitive ads based on health content are cause for concern over at David Williams' Health Business Blog.  This brings to mind the new Google privacy policy, which says the 'plex has a hands-off policy when it comes to "sensitive personal information," including "confidential medical facts" (gosh, did a lawyer write this policy?) — but we've seen this movie too, in an earlier NY Times piece about Target and, well, targeting.

Finally, please consider the relationship between the government and social media tools. Just as social media has lowered barriers, geographic and otherwise, between physician and patient, and among collaborators, so, too, has it lowered barriers to engagement with those elected and appointed to serve in our nation's capital.  Let's examine the activity related to Federal stimulus dollars focused on health care, as an example. First, the government, in the form of ONC, is blogging about state health information exchange grantees taking part in the ONC consumer innovation challenge. (See more about the ONC and consumer/patient engagement courtesy of Nikolai Kirienko.) Second, there are numerous tools to use in analyzing the proposed regulations on Stage 2 of Meaningful Use of Electronic Health Records (e.g., bookmarked regs and comparison chart shared socially) as well as exhortations to comment on the proposed regs (you may sample a few courtesy of Dave Chase, Brian Ahier and Project Health Design), tools to use in commenting officially and unofficially, and tools to be used in aggregating comments so that they may be filed officially (hat tip to Nate Osit), which have been shared socially. This is so very different from the bad old days of the Pony Express, which is what we used to communicate with Washington when I was starting out in practice. (Not really. Just checking to see if you're still awake.)

Gentle reader: You did it!  This is the end of the line. Thanks for riding with us this week on the HCSMReview Express.  In the immortal words of Michael Dukakis, speaking about the run for the White House (not about enduring this lengthy edition of HCSMR), It's like running the Marathon (and yes, the Boston Marathon runners did wend their way through my leafy suburb on Monday, as they do each year). We hope you come back and try it again. 

HealthCare SocialMedia Review has information about the next edition (which will be up in two weeks' time) and instructions on how to submit your posts for review in future editions. 

David Harlow
The Harlow Group LLC
Health Care Law and Consulting