Social Health 2010: The Breakout Sessions (Part 3 of 3)
This is the third in a series of posts recapping the Social Health 2010 un-conference in Austin. Part 1 covered the morning speakers, and Part 2 covered the afternoon speakers.
I’ve said a lot about what a great event Social Health 2010 (aka SXSH) was as a pre-conference to South by Southwest Interactive, but I wanted to wrap things up by sharing impressions and thoughts from the breakout sessions I attended.
Bryan Vartabedian, MD (@Doctor_V)
Bryan spoke about what he sees as an obligation of providers to participate in social media, and posed some suggestions for how doctors can continue to stay relevant in the future. The most interesting to me was the idea of doctors as digital shepherds of health literacy, in response to the overwhelming amount of misinformation and even propaganda around health issues on the web.
As an example, he explored the misinformation surrounding the issue of whether vaccines can cause autism. The study that initially raised this concern has since been retracted, yet 1 in 4 parents still believe there is a causal relationship between vaccines and autism. Bryan proposed that if each of the 60,000 doctors in the American Academy of Pediatrics were to write a single blog post on the subject (especially if they each linked to medically-sound resources), it would go a long way in combating the spread of this misinformation. (You can read more of Bryan’s views in this piece in Oncology Times.)
It raises an even larger question: is health an area where the democratization of information on the web is actually detrimental? It seems to me that the more outrageous or sensational some piece of health content is, the more likely it is to capture links and thus rank higher in Google results on related keywords.
Phil Baumann, Creator of #RNchat (@philbaumann)
Phil is the creator of the #RNchat, a weekly Twitter conversation for and among registered nurses, and he joined the event virtually via WebEx/Skype.
In addition to providing a forum for RNs to share information and resources, #RNchat has a secondary goal of improving web literacy among RNs. Phil sees this as an opportunity to get RNs using Twitter, which may then serve as a “gateway drug” to other forms of social media. Follow @RNchat to stay up on the latest discussions.
Rather than try to summarize Phil’s session, I thought I’d share the deck he presented:
Dana Lewis, Co-Organizer of SXSH (@danamlewis)
I got lost in two other sessions on my way to Dana’s, but I was glad to catch as much as I did. Talk about passion! Diabetes management is a topic that’s very personally relevant to Dana, and her own experiences engaging with others diagnosed with Type I Diabetes in online communities are quite interesting.
Ash Damle, CEO of MEDgle (@ashdamle)
Ash spoke about the company he founded, MEDgle, and the clinical decision support tool he created primarily to help nurses in emergency rooms perform triage. Unfortunately I can’t link to that tool (it goes into its first hospital testing soon), but I encourage you to explore MEDgle.com and HealthierMee.com (an online health and fitness tracking tool).
Jen McCabe, Founder and CEO of Contagion Health (@jensmccabe)
I caught the tail end of Jen’s breakout session on practical tools for business, where she was leading an enthusiastic discussion around “gaming” your health to produce behavior change in incremental steps. Jen is the creator of Get Up And Move, and ended her session by playing this video that Wired editor Joe Brown had posted just that morning of his 60-second wall sit in response to a G.U.A.M. challenge.
You can follow Jen over on her blog.
Anything I missed? Let me know about additional resources from SXSH in the comments, and I may include them in this post.
Social Health 2010: Afternoon Speakers (Part 2 of 3)
This is the second in a series of posts recapping the Social Health 2010 un-conference in Austin. Part 1 covers the morning speakers, and Part 3 covers the breakout sessions I attended.
After the morning breakout sessions, we had a quick lunch (provided by MD2P.net — thanks John) and an opportunity to socialize. I had a very interesting conversation with Abby Lowe, Lauran Driver, Sally Bage, and Marc Monseau about HIPAA (what else?) and the impact patient privacy has on innovation in health (or lack thereof). After lunch we were treated to three more impressive speakers. As in Part 1, I’ve tried to provide notes and links to resources for those who were unable to attend.
Fabio Gratton, Chief Innovation Officer and Founding Partner at Ignite Health (@skypen)
Once we were all suitably fed and caffeinated, Fabio Gratton took us through the story of his creation of the hashtag #FDASM and the site FDASM.com in response to the FDA exploratory on regulations for social media. In addition to his role at Ignite, Fabio is a founding member of WOMMA, on the editorial board for Medical Marketing & Media, and is a regular contributor to several top e-health marketing blogs.
Background on the conversation around FDASM, from FDASM.com:
On November 12-13, 2009, the FDA held a public hearing regarding how FDA-regulated products can use the internet and social media for health-related communications. These hearings were the first step toward developing guidelines around this type of marketing for the industry. This site is dedicated to capturing the conversations, stories, and resources related to this topic.
Fabio led off with a quote from Pepsico Americas SVP Frank Cooper (with regard to Pepsi choosing to invest in social media instead of the Super Bowl): “In 2010, each of our beverage brands has a strategy and marketing platform that will be less about a singular event, less about a moment, more about a movement.”
Three ingredients for a successful movement:
- People +
- Purpose +
- Passion
Fabio illustrated how he used collaborative tools to help gather & organize resources such as draft comments to the FDA from pharma companies in a way that was much more user-friendly than the govt’s own site. (You may need to just spend some time at FDASM.com to see it all in action.) He also took us through a few more projects he launched, such as PharmaTweeps, an aggregator of all the leading pharma brands’ Twitter feeds.
Great closing quote: “Fail forward.” Don’t be afraid to screw up — do it in such a way that you’re making progress even as you’re making mistakes.
Marc Monseau, Director of Corporate Communications and Social Media at Johnson & Johnson (@JNJcomm)
Marc has a rare perspective on what it takes to lead a giant corporation with dozens of subsidiary brands into the social space. He handles media relations for Johnson & Johnson — providing issues management and crisis communications support and counsel. He’s also responsible for Johnson & Johnson’s blog, www.jnjbtw.com, works with different teams in the organization on their social media strategy.
J&J’s approach to social media:
- Start simple
- Introduce complexity; build confidence
- Add more complexity; broaden scope (add more tools/platforms)
Marc highlighted the importance of not trying to launch social media efforts in a silo, but rather to tie them to specific programs & strategic objectives: “Make sure that your social media initiatives connect with other initiatives around your business.”
Marc shared some interesting stats on health seekers online. One in particular stood out, from (I believe) the Pew Internet & American Life Project: 60% of online “health seekers” say that the information they found on the web directly affected a health decision they ultimately made.
Q&A featured a good discussion about the distinction between an individual who represents a brand in social media and the brand itself. Marc represents J&J much as Scott Monty represents Ford; but Forrester struggled with this when Charlene Li, Peter Kim, Jeremiah Owyang and others left (separately) and took their massive audiences of followers and blog subscribers with them. (Forrester has since implemented a policy where blogging employees are more or less required to blog only on Forrester’s properties. Peter Kim reflects on this policy here.)
David Hale, Social Media Strategist at the National Library of Medicine and Project Manager of Pillbox (@lostonroute66)
Just about the time most people hit their post-lunch, early afternoon energy slump, David came out and gave a presentation that jolted us all awake. David is the Project Manager of Pillbox, a National Library of Medicine/ FDA patient-safety initiative which is restructuring federal pharmaceutical data and adding high-resolution images of solid-dosage medications to create a public domain medication identification and reference system. Pharmaceutical Manufacturing Magazine referred to Pillbox as “the Physician’s Desk Reference on steroids.” Pillbox is being built through an open development process, with various health-related communities sharing ownership of the project. And get this: all data from the project is being released through an API to promote disruptive innovation in the Health IT community. Very cool.
What can I say about Pillbox? This is an incredibly exciting project that seeks to take an enormous amount of dense, user-unfriendly data that the government has on FDA-approved drugs, and turn it into an API that has real, practical value for rapid pill identification. There are 1.5 million reported cases of unknown pill overdose resulting in emergency hospitalization every year (hope I didn’t butcher that stat too badly, David), and emergency responders have very few resources on hand to narrow down exactly what that small, blue, partially-digested pill might be after it’s pumped from someone’s stomach.
David’s team has taken the raw FDA data on thousands of drugs and dosages and combined them with original hi-res photos in a slick (and very usable) Adobe Flex-powered interface for rapid identification based on characteristics like color, shape, visible text & numbers, etc. There’s even an HTML-only version of the site for maximum compatibility.
On top of this, the team at Pillbox has created an open API, to provide other developers with access to their cleaned-up data. Already, some savvy hackers out there have created a (more than a little irreverent) Facebook app, and even a realtime text-to-speech IVR system for over-the-phone pill identification (neither are yet available to the public).
Check out Pillbox at http://pillbox.nlm.nih.gov/
That’s it for the afternoon speakers; stay tuned for Part 3 on the breakout sessions.
Recapping Social Health 2010 (Part 1 of 3)
This is the first in a series of posts recapping the Social Health 2010 un-conference in Austin. Part 2 covers the afternoon speakers, and Part 3 covers the breakout sessions I attended.
Yesterday was the first annual #SXSH un-conference (for legal reasons, the S-X does not stand for “south by”). Organized in two months by a small team of passionate individuals who had never met each other before in real life, the event brought together some of the leading minds in the Social Health / Health 2.0 space from around the country. As someone who is still extremely new to the healthcare industry, I can’t even begin to quantify how much I got out of this event.
Thanks again to Shwen Gwee, Dana Lewis, Reed Smith, and Tom Stitt for organizing such a phenomenal event.
I have pages and pages of notes from the event, but unfortunately I don’t have time to turn them into a full narrative, as that “other” conference is starting today. What I’ve tried to do is provide links to the resources that were discussed, for those who were unable to attend the event — mostly in outline form.
Keynote Speaker: Doug Ulman, President and CEO of Livestrong (@LIVESTRONGCEO)
Doug is a 3-time cancer survivor, non-profit and social media icon, and just a really nice, down to earth guy. He kicked off the conference, talking about his battle with three types of cancer, how he got connected with Lance Armstrong (Lance emailed him; Doug had never heard of him), and how he wished social media had been around when he was first diagnosed: “Throughout this whole experience, all I wanted to do was connect with someone who had been down the same path.”
Three reasons social media will change health care:
- Free and accessible
- Real time: can get answers to things right away; no more “I wish I would have known X six months ago”
- Patient-centered, patient driven
Cancer is 400 diseases; there will be no silver bullet. “At the end of the day, it’s people coming together and interacting, that will change this paradigm.”
Doug urged participation in clinical trials: “Only 3% of adults participate in clinical trials. If that number was 6%, we could shave years off of clinical developments.”
A patient’s point of view on HIPAA: ”This may be controversial, but…As a patient- HIPAA doesn’t matter to me at all. I’ve had cancer; I’m already discriminated against in so many ways. I already can’t get life insurance.”
Examples of how social media has impacted their work & business:
- The @LIVESTRONG Twitter page is the top referrer to the Livestrong website; ditto for grassroots advocacy page, LivestrongAction
- In one of the worst economic years we’ve seen in our lifetimes, Livestrong raised 17% more in 2009 than in 2008 (2009 was the first full year of having an active social media presence)
Highlight from Q&A
Q: “When you first started with Twitter/Facebook, did you have strategy or did you just jump right in?”
A: Someone on Doug’s team signed him up for Twitter. When Lance asked what it was: “I don’t know what it is, but they put it on my Blackberry…. There was no strategy, at all.” But “there is incredible authenticity. With Lance, there are times when he posts things, when I’m like, ‘Did he really just post that?’ But it’s real.”
Speaker: Jenn Texada, M. D. Anderson Cancer Center (@jenntex)
Jenn runs social media for M. D. Anderson, and social media listening is a 24/7 activity for her. She shared some great success stories, and a was also gracious enough to show some situations where things were trickier.
Getting things up and running was tough; lots of ‘nightmare scenarios’ where explored. (“What happens when…”) It took going down to the finance, customer service, etc., departments and telling them, “OK, we have these new channels. And this is a good thing.”
The Mayo Clinic’s work in social media paved the way for Jenn to sell in her own program.
Great success story from Facebook: A man posts, “Just diagnosed with cancer, can’t talk to family and friends. Want to curl up in a ball and cry.” MD Anderson immediately shares a resource and a number he can call to talk to someone, and other patients chime in to offer support. (See the actual post: http://www.facebook.com/MDAnderson?v=feed&story_fbid=348390749910&ref=mf )
Jenn’s advice to those trying to get a social media initiative off the ground at their own company: Find the people internally who really understand communications (and hopefully really understand social media).
Speaker: Greg Matthews, Humana (@chimoose)
Greg Matthews is Director of Consumer Innovations at Humana. After spending a career helping to build and operate businesses, Greg is now focused on using social media to create different kinds of interactions with consumers – with the goal of supporting a social revolution in health. Most recently he launched the health industry’s first twitter search tool, myTPSreport.com , and designed and launched CrumpleItUp.com , where he blogs regularly.
Greg’s task at Humana, and the question that led them into social media: “How can we, Humana, build a deeper level of commitment with our consumers as an insurance company?”
Key insight (possibly one of the best insights of the whole day): When thinking about all the times when an insurance company actually comes into contact with its members, Humana (via Greg) realized, “we are part of a sickness industry” (as opposed to a health industry)
One of the questions became: “How can we engage with healthy [health-minded] communities?”
- Build our own community? “Trying to move us away from that sort of thinking”
- Asked permission to participate in Twit2Fit
- Had already been members, personally, for 6 months
- Embedded a professional marathoner in this amateur fitness community
- Training logs, tweet chats, etc
- Engagement in this community went up 300%
“One of the things that people don’t think about, when they think about social, is that gaming is a social activity.”
- Created a social game built on web-enabled pedometers for kids
- Kids got together at recess to do exercise to get their step count up (!)
- Kids were exercising with families at home to get their step count up (!!!)
- Called “Horsepower Challenge” – horsepowergame.com
Along the way, Greg demoed a very cool Twitter/geo-mapping dashboard they developed — try it yourself at http://www.mytpsreport.com/
Greg’s #1 target for 2010: communities of care
- Ex: CureTogether.com
- 6-7K members
- Over 400 conditions represented
- All about helping people to find people in a similar situation and figure out how to work through this thing that’s happening to me
- “There is tremendous power in this model… I don’t yet know how a health insurance company can play here, but I want to support it, I want to be a part of it”
Q&A Highlights:
Q: “How did you pull this all off at Humana?”
A: “A little bit of stealth, and a quick win.”
Q: “Does social gaming as vehicle for behavior change translate to adults? Is Nike+ the model?” (Kids examples include Humana’s Horsepower Challenge, and the recently launched glucose meter for Nintendo DS)
A: There are a lot of sensors out there that can provide personal data related to health. Nike & iPod is a great example. What’s missing is the experience that ties the raw data, the social aspects, and the tracking of behavior change together in one place. “I think the market is there.”
More to come: the second set of speakers in the afternoon — Fabio Gratton, Marc Monseau, and David Hale — as well as the breakout sessions I attended.
A First Look at “The Decision Tree”
Thomas Goetz’s first book, The Decision Tree, was released yesterday. Though his role as the executive editor of Wired Magazine guarantees his ability to tell a tight story about a complex subject, it is his master’s degrees in public health and American literature that qualify him to write passionately and insightfully about patient navigation of the American health care system.
The subtitle of the book, “Taking Control of Your Health in the New Era of Personalized Medicine,” confirms that this is a manifesto of patient empowerment. “Know thyself” is the implicit theme of much of the book, as Goetz ardently advocates gaining knowledge of one’s own genetic and environmental health factors to the fullest extent possible; from simple activities such as measuring daily weights to privatized personal genomics — having your DNA assessed for predisposition to thousands of different health conditions by vendors such as 23andMe and Navigenics. Goetz explores and refutes the idea that certain knowledge, such as the knowledge that you have a terminal illness for which there is no treatment, can be toxic in it’s own right. Rather, he seeks to illustrate — with the results of several clinical studies — that all knowledge about your personal health is valuable and should be sought after.
Goetz cautions, however, against the pitfalls of countless regularly administered screening tests, particularly with regard to patients’ understanding of the results. One of the more notable examples he discusses is the PSA test for prostate cancer, known in the medical community to produce both a high number of false positives (men who screen positive but don’t actually have cancer) and false negatives (men who screen negative but do in fact have cancer). A knowledge of what the test actually does (and doesn’t) prove is thus vital to anyone considering such screening, especially when treatment options typically include surgery or radiation therapy, both with frequent side effects such as impotence and incontinence.
Goetz also specifically touches on the value of “computerized decision tools… available to help people understand their situation and make good calls.” He concludes that “these these tools can have a remarkable impact on the quality of our decision making.” Goetz elaborates,
Do these tools actually help patients? Do they overcome our fuzzy thinking or confuse us all the more? To answer that question, Dr. [Annette O'Connor, PhD; professor of nursing and epidemiology at the University of Ottawa] reviewed nearly 200 studies that assessed a specific decision tool. These tools helped patients face specific situations, from breast and colon cancers, to diabetes, to osteoporosis treatments. The cumulative answer divined from these 200 studies was that yes, decision tools lead to better decisions, as demonstrated by all sorts of metrics. Fewer patients using decision aids reported feeling uncertain or unclear about their options, and more had made up their minds on a course of treatment after using a decision aid. What’s more, patients using decision aids had better understandings of the risks and rewards of treatment…. Patients using decision aids seemed to get better care than those acting solely on their physician’s guidance. And compellingly, patients chose less surgery when they understood their options. They preferred a behavioral or drug therapy over an invasive procedure 24 percent more often after consulting a decision aid.
Perhaps of most interest to me personally, Goetz takes a deep dive into the realm of online patient support communities, specifically PatientsLikeMe. The internet, and particularly social media, is a relatively new resource for patients, and one that definitely “unnerves the medical establishment.” Back in 2001, the American Medical Association made a more candid statement: “Trust your physician, not a chat room.”
But the 40,000 registered members of of PatientsLikeMe, who have bypassed HIPAA entirely by volunteering their own personally-identifiable health information, are clearly not only finding emotional support through their online interactions, but gaining valuable knowledge about their conditions through the experiences of others. My own, limited, firsthand observation of PatientsLikeMe over the past six months tells me it’s a breakthrough platform that will only continue to gain momentum as a resource for sufferers of chronic conditions.
The Decision Tree is a remarkably accessible book for the amount of scientific and medical knowledge conferred to the reader. Whether or not you have a professional interest in the health care system, you should certainly have a personal interest in your own health; and in that case, I recommend you get your hands on a copy.
(Cover image respectfully borrowed from www.thedecisiontree.com. I make no claim to any rights thereof.)
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