South by Social Health 2014

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The 6 P’s of Social Health — Reflections on SXSH 2011

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NOTE: This post was also featured as part of the themed content on the Social Media Club blog, with October focusing on healthcare.

On September 19th, 2011, a group of around 80+ people from across the healthcare industry gathered in Philadelphia, PA for for the 2nd Social Health Summit (#SXSH).

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:

Personalized:
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.

Participatory:
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”. N
ot 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.

Preventative:
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.

Peer-to-Peer/Patients:
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:
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.

Passion:
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.

P.S.
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.

Gamification of Health by Fabio Gratton

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Wow, it’s been a while since I last blogged… Let’s hope this inspired post is the start to some regularity from this point forward.

So what inspired me to jump back on the blog wagon…?
Well, a couple of days ago, my good buddy, Fabio Gratton, got up on stage at ePatient Connections and did a 6:40 min “song and dance” (presentation), otherwise known as a pecha kucha. For those unfamiliar with the concept, a pecha kucha presentation is based on a simple format — 20 slides, each playing for 20 secs long. As soon as the presenter ‘clicks go’, the slides automatically advance every 20 secs. It’s similar to the O’Reilly Ignite series (which is quite funny, since the company that Fabio co-founded is called IGNITE Health).

I’ve seen a few Ignite presentations before, but I have to say that Fab’s pecha kucha on “Gamification of Health” is ABSOLUTELY BRILLIANT! Probably one of the best presentations in this format that I’ve ever seen and with a great story/message as well — watch and learn…

I don’t want to steal all the thunder from the video (go watch it now!), so here’s a very brief summary of what was covered…

  1. Gamification
    - It’s not just “games for health” or “exergaming” (e.g. Wii Fit)
    - It’s about the “game layer” over our life
    - It’s really Game Mechanics!
  2. Mechanics
    - e.g. Countdown Dynamics (e.g. think Groupon)
    - We need EPIC Meaning in what we do
    - References Jane McGonigal
  3. Framework
    - EPIC Gamification of Health
    - Experience
    - Purpose
    - Incentive
    - Catharsis

Let’s Miyagi the world!!! Wax on, wax off… :-)

DC Health Innovation Week and HHS Heatlh Data Initiative

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June 9th marks the kickoff to the much anticipated HHS event — the Health Data Initiative (a.k.a. Health Datapalooza) — that led to a series of additional events (like HealthCamp DC and Health 2.0 Code-a-thon) surrounding it, resulting in the Mayor of DC declaring the week of June 6th Health Innovation Week.

According to the folks running the event, there are over 650 people that will be attending the event (~450 in the live event room and an overflow room for the rest). If you haven’t registered, don’t bother… From what I hear, they still have a waiting list of over 200+ people. Instead, what you can do is watch the live broadcast or join one of their 10 satellite locations around the US, which includes: PA, NY, OH, CA, KY, MI, and TX.

Of course, you can also follow along the live tweets using the #healthapps and #dchealth hashtags. In addition, a few of my fellow Edelman Health folks (including myself) are going to be live tweeting the event, both from the live DC event, as well as the sattelite NYC “unNiched” event — we’ll be aggregating our tweets via CoverItLive (below or at EdelmanDigital.com), so I hope you can join in the festivities. Look out for a series of interesting “datapalooza” announcements that will be released throughout the day, as a course of this event.

Leaving the Pharm…Heading to the Big City

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Dear Friends,

After almost 6+ years on the “inside” of the pharmaceutical industry, I will be stepping off the reservation… Well, not TOTALLY off the Pharm completely, but I will be moving out from being on the “client side” to being on the “agency side”. This work-week — ending Friday the 13th :-) — will mark my last week in the office as a Vertex employee.

While it is with bitter-sweet emotions that I am leaving Vertex, it is with great pleasure and much excitement that I can announce that I will be joining the health practice at Edelman as VP of Digital Health, where I will be reporting into Bruce Hayes (General Manager of the NY Health Practice) and joining my friend, Gigi Peterkin (formerly from AZ), to head up and build out the digital health offerings in the NYC office.

Many of you will probably be familiar with Edelman, either by their reputation alone, their well respected digital thought leaders (like Dave Armano and Steve Rubel), and/or by their well regarded Edelman Trust Barometer and Edelman Health Engagement Barometer studies.

Leaving Vertex…
I’m sure many of you are wondering why I’m leaving Vertex, especially at a time like this; where the company is at the brink of commercializing and poised to become a great full-fledged pharmaceutical, with a new product (pending FDA approval) and pipeline to boot.

So, let me first put aside any thoughts in your mind that I am leaving because I have any doubts or negative feelings towards Vertex. In fact, it’s quite the opposite — I have a HUGE amount of respect and adoration for the company, the people, and the product(s).

I really admire and laud the Vertex senior leadership for the approach/mindset they’ve taken towards building this company. I’m a big fan of the culture and the patient-first mentality that pervades even the commercial (sales and marketing) teams. And I absolutely love the fact that at almost every major (internal) meeting, we are reminded of the George Merck creed: “We try never to forget that medicine is for the people…“. If there’s anything I learned more about during my time at Vertex, it is the importance of always trying to serve the patients’ needs and how to try to put them first, even within a commercial setting.

On top of all that, I’ve gained a lot of experience in building a digital infrastructure and strategy in preparation for commercialization and I’m also very proud of my recent (digital/social) accomplishments, including the launch of the corporate Twitter account and the (digital) hepatitis C disease education campaign, which includes a YouTube Channel and a Slideshare page.

Bright Lights, Big City
Having said all that, sometimes an opportunity comes along where the timing is right and you know deep inside that it’s worth changing your whole world for… including a big move from Boston to NYC. So, while I was able to rollout some cool and interesting digital initiatives during my time at Vertex, my new role at Edelman will allow me serve the industry in a greater capacity and spread my wings more broadly by challenging me to think across multiple audiences, diseases, and brands/clients. It will also give me the opportunity to use my knowledge and experience to help other healthcare and pharma companies implement/execute innovative digital and social media. Additionally, I will be involved with internal education, client strategy and development, and overall thought leadership in healthcare and social media (HCSM).

I am also looking forward to the opportunity of working alongside and tapping into the Edelman “brain-trust” of people that I have come to know and respect in the digital and health community, including my friends: David Armano, Emily Downward, and of course, Gigi Peterkin.

Moreover, as many of you know, I am passionate about the use of digital/social media within HCSM and, as such, I’ve been heavily involved in various activities that resonate with this passion, including: my Med 2.0 Blog, SocialPharmer.com, SXSH.org (Social Health), and PharmFresh.TV. Hence, the opportunity to continue to embrace these activities — together with various industry engagements (e.g. speaking events) — at a greater level, while bringing more value to the organization that I work for, is something that I am very excited about.

Parting Is Such Sweet Sorrow
Amidst all this excitement about the job and the big move to NYC, I also realize that I will very much miss many of my good friends that I’m leaving behind in Vertex and the Boston area, as well as the whole Boston social media scene overall. However, it comforts me to know that NYC isn’t really that far away and many people travel through NYC at some point, so I’m hoping to still see everyone quite regularly.

Finally, aside from the sticker shock that I’m getting from NYC property prices, I think the biggest challenge that I will have to overcome with this move is how difficult it will be for me to continue to be a Boston sports-fan in NYC… Go B’s, Go C’s, Go Pats, and Go Sox!!! I love that dirty water… :-)


Social Health @ SXSW 2011

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Wow! Where did all of January and February go? I can’t believe that neither Marc nor I have had a chance to blog at all this year, as things have been a little crazy for both of us (mainly in terms of our “real” jobs)… So much for my recurring new years resolution of blogging more regularly! Must. Try. To. Keep. Up.



Anyway, can you believe it’s now less than 1 week till SXSW (South by Southwest)? I’m totally psyched and can’t wait to head out :-) !!!


As many of you know, 2011 will be a defining year for healthcare at SXSW because “health” is now a distinct topic/track within the mainstream SXSW sessions, partly due to the Social Health (SXSH) Unfoncerence that we held last year (read more at SXSW blog). However,
since we already succeeded in achieving one of our main goals last year — to get health into more “mainstream” events — we decided NOT to hold another Social Health Summit/Unconference at SXSW this year (so we don’t compete with the “Health Track”). Instead, we will be moving  the unconference to a different date and venue later in the year (we’ll be announcing where/when on Friday at SXSW — keep reading).

So, what are we doing at SXSW this year?

Well, we realize that there will probably be a lot more healthcare folks that now have an excuse will plan to attend SXSW in 2011 thanks to the “Health Track”, so we suspect there may be many people who will be attending SXSW for the first time. As someone who attended last year for the first time, I can tell you that it can be an overwhelming, over-stimulating, sleep-depriving, and mostly AWESOME experience.

So, in the spirit of the “Social Health” mission to “socialize” the health industry and bring together various groups of people from across the healthcare spectrum (patients, professionals, payers, industry, etc.), we’ve  partnered with some sponsors to organize a few “mixers” (read: parties) targeted at the “health folks” as part of what we call the  “Social Health @ SXSW“  experience. We’ve also compiled a list of all the health related sessions below and provided some related resources to help everyone navigate their way through SXSW and find all the health activities that are taking place…

2011 Social Health @ SXSW Mixers:

Hashtags:
For the main part, we will be using the hashtag #SXSWh for all the Health Track sessions/activities. However, we will also be using #SXSH for all the Social Health @ SXSW activities, so be sure to put both in your filtered tweet stream.

Resources:

Health Track Sessions:


Click here for to be taken directly to the Google Doc

We hope that you’ll find all these resources helpful and we’ll continue to update them as we find more. If you know of any additional sessions, activities, events, etc. that should be listed, please do leave a comment and let me know.

See you at SXSW!!

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