NOTE: This post was also featured as part of the themed content on the Social Media Club blog, with October focusing on healthcare.
About Social Health
For those who are unfamiliar, Social Health — otherwise known as #SXSH (Sharing. Exchanging. Social Health) — is a day-long international event that is partly an un-conference and partly invited speakers (called the Social Health Summit); AND it is also a movement that strives to bring together and facilitate conversation among all areas of the healthcare spectrum, including: patients, professionals, payers, providers, pharmaceuticals/biotech, government, and more.
The inaugural Social Health Summit took place in 2010 just before South by Southwest (SXSW) with the intention of bringing more healthcare and social media (HCSM) related content to the mainstream event. The 2010 Summit turned out to be such a success that the SXSW organizing committee ended up incorporating a health track into the regular programming as part of the main conference for 2011.
Social Health 2011
For the 2011 Summit, we once again gathered a group of distinguished speakers, including our kickoff speaker, Todd Park (CTO, Health and Human Services), as well as #HCSM dignitaries such as: Ed Bennett, Melissa Davies, ePatient Dave, Tom Chernaik, Jane Sarasohn Kahn, and Dr. Kent Bottles, to name a few. For a full list of invited and un-conference speakers please visit the SXSH website.
While the various speakers addressed a variety of topics covering a wide spectrum of healthcare topics — from “data liberation” in the government, to the quantified self, to how mobile is empowering health — there were some common themes that came through… So, you’ve heard of the “5 P’s of Marketing“? Well, here are the 6 P’s of Social Health:
Healthcare and medicine are becoming more personalized; both in terms of access and support/services, as well as treatments. For example, the major sponsor of the 2011 Summit is a company called Clarient (a GE Healthcare Company), which develops molecular diagnostics tools to detect specific biomarkers in cancer. They launched their new educational campaign about personalized medicine and cancer, called “Is My Cancer Different” at Social Health… To quote the CEO of Clarient, Ron Andrews, “If you’ve seen one cancer, you’ve only seen one cancer…At the molecular level, every cancer is different“.
From a more support/service oriented standpoint, Todd Park kicked off the summit with a dynamic presentation about how “New Incentives + Information Liberation = Rocket Fuel for Innovation”. He referred to what he calls “Data Liberación” (said with your best Spanish accent) as an important aspect of “rising patient data liquidity”, which empowers patients to have more control over their own data about their health. And there is probably no better testament for how healthcare is becoming personal than the whole ePatient movement. Fueled by increased access to information/data and to other patients via the internet, people are taking charge of their own health and Jane Sarasohn Kahn drove home this point in her presentation, where she talked about the new era of “DIY health” and reminded us that when it comes to health care, one size does not fit all.
Speaking of ePatients, another important theme is the movement towards Participatory Medicine, where “…networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners”. Not just a “one way street” of top down instruction. Ed Bennett spoke about how hospitals are using social media for interaction, advocacy, and a myriad of other ways that involve the patient and he also provided a recent example of how Matthew Browning Tweeted for help for his grandmother with a ruptured aorta and helped save her life. Also, Dave deBronkart (a.k.a. ePatient Dave) spoke on these points through personal anecdotes as well as those of other patients/caregivers and he left us with a poignant reminder that “patients are the most under-utilized resource in healthcare” — his personal rallying cry: “Let Patients Help“.
Dr. Kent Bottles also spoke about “Grassroots Mobilization” and how social media is being used successfully in different areas of medicine, from patient advocacy to clinical trial recruitment and even for FDA patient testimonials. Dr. Bottles made a stark remark about how newly diagnosed patients only remember about 50% of what a doctor tells them and, of that, only about 50% is accurate, highlighting a huge and important gap in your typical patient-doctor interaction. He then told us about a company that he advises/consults for, CareCoach.com, which is trying to facilitate the doctor-patient conversation by helping to “plan, record, and review your doctor visits for more effective healthcare conversations” — basically helping patients/doctors prepare for a visit and even providing real exam room dialogues, as well as allowing patients to record their own exam room conversation and share it with members of their care team who can help explain/remind them of what they need to do.
Of course, another part of participatory medicine is open innovation — basically, crowdsourcing innovation. Todd Park kicked off the meeting with some great examples of how the government has opened up data through the Health Data Initiative, in order to “partner with the public” and help solve real world problems based on real government data, as well as to turn “complex spreadsheets into useful data” that can help healthcare overall — some examples of this incude: iTriage, Castlight, and Asthmapolis. Similarly, Sara Holoubek talked about the role of innovation challenges in healthcare, such as the Sanofi Aventis “Data Design Diabetes” challenge that she consulted on.
There was also discussion around Preventative Medicine — the need to not just treat someone after they fall ill, but to try to encourage behavior change that will lead to a more healthy lifestyle, which could in turn prevent an illness in the first place. To that end, Fran Melmed led an un-conference discussion on “workplace wellness” and how employers can be a driver of healthy behavior change. Also, Nic Wilson from Body Media led a separate un-conference session about new personal health tracking devices like Body Media, that provide feedback about your exercise and daily activities, with the ability to share your information socially for support… All this being part of the Quantified Self movement — getting the right feedback, to the right people, at the right time, in order to ultimately drive appropriate behavior change.
Needless to say, patients are at the very heart of the everything that Social Health stands for. As alluded to earlier and by various speakers at the summit, patients are now helping themselves and seeking out other “patients like me”. The internet — social media, in particular — has really changed the paradigm of how people seek health information… Not just for patients and caregivers, but even doctors and the rest of the healthcare spectrum. Melissa Davies of NM Incite presented some brand new, hot-off-the-press data on the prevalence of a disease vs. the volume of discussion online (in social media) — check out the great infographic here. Also, our very own SXSH co-organizers, Jenni Prokopy and Kerri Sparling led an un-conference session (and gave out stickers saying “I’m a Patient Too”) on empowered patients and reminding us that we’re all patients some day.
Portability, in this case, comes in two forms… Firstly, data portability in the sense that we are now able to have access to our personal health data in a way that’s never been possible and (in some cases) take it with us to where we may need it. One great example of this is what Todd Park shared about the BlueButton Program, which enables “…any veteran, Medicare beneficiary, or military beneficiary to download an electronic copy of their own personal health or claims information”.
Secondly, we also talked about portability in the physical sense — how the mobile platform is essentially a tsunami driving a new wave of healthcare access, in a very personal way. In a really interesting un-conference session led by Michelle Samplin-Salgado from AIDS.gov, she discussed some fascinating data around mobile outreach to Latino and African American communities. She found that “desktop searches” tend to be more informational, whereas “mobile searches” tend to be more specific and contextual — essentially, mobile searches tend to be more “honest” and less vague; again speaking to how personal a mobile device has become. Furthermore, she found that mobile users were spending far more time on site compared to desktop users. In support of that, another interesting fact that Meredith Ressi from Manhattan Research reminded us of during her un-conference session, is that while mobile is HUGELY important, it’s not just about apps… The majority of users use mobile for search, so that needs to be carefully considered in any mobile strategy.
Finally, it’s all about passion. Passion for patients. Passion for health. Passion for sharing. exchanging. social health! Many of the speakers and examples they cited did not first seek to do something in this space so they could “get rich”. Usually, it’s about some personal experience and/or major health incident that has fueled the passions of individuals and groups to do what they do. For example, ePatient Dave — who he is now — was born out of his experience as a patient who was only given 24 weeks to live at the time of his diagnosis…in 2007. Patients Like Me was founded out of the passion of wanting to help a brother with ALS. And people like Todd Park (whom I am convinced doesn’t really sleep at all brings the passion for healthcare into the work he does, thereby driving disruptive changes in areas like the government — an organization that is rarely associated with innovation, openness, or speed. It’s all fueled by passion.
Not an “official” P among the other “six P’s of Social Health”, but as a post-script, I wanted to add that there were also a lot of other important discussions that don’t really fit neatly into any of the above headings. Most notably, are the discussions around regulation and transparency, such as Tom Chernaik’s presentation about what his group, CMP.LY, are doing and their efforts to help standardize online transparency and disclosures. Having already worked with the FTC, SEC and the likes, could CMP.LY also find a way to help the healthcare industry stay transparent? On a similar note, Mark Bard’s discussion around the Digital Health Coalition and what it’s trying to do with trying to bring organizations together to help define how to act responsibly with their promotion and communications in social health.
To review the live tweets that came out of the event, please see the CoverItLive module on SXSH.org or get the transcript here. Event media, including presentations, video, etc. will also be updated on the SXSH.org website over the next few weeks.