#SXSH - My Many Perspectives

Early last week, I had the opportunity to attend the Social Health Summit in Philadelphia.  I am a relative newbie in this arena and was looking forward to the opportunity to expand my horizons a bit.  As my friend Russ, pointed out, I had somewhat of a unique vantage point for the conference: I am a health care professional, a patient with a chronic illness, a caregiver for a patient with a chronic illness, a blogger and a marketer/consultant.  Obviously, I had a lot of insights from all aspects of my life and career.

This was the first meeting I’ve ever attended where it was completely appropriate to be on your mobile device while the speaker was presenting.  I like this!  I also really liked the relaxed atmosphere for asking questions and the ability to interact directly with the speakers.  However, I am not used to the un-conference style and somewhat ‘loose’ nature of the agenda.  I am not sure if this is a result of my Type-A personality or years of pharma experience, but I like a little structure and order to my meetings.  It felt a tad unorganized.  I’m adaptable, though, so I made my way through it.

The day started with a dynamic presentation from Todd Park, Chief Technology Officer for Health and Human Services.  As a healthcare professional, I’m intrigued by what HHS is doing to stimulate innovation.  That just seems unusual to me for a government agency.  I was also fully drawn in by Todd’s excitement and passion for the topic.  As a patient, or should I say an engaged patient, the information is great to know.  As a pharmacist, it provided some new insights (for me anyway) into healthcare reform.

A few other key events and tidbits from the day:  36% say social networking is the most valued feature of their mobile phone (from Melissa Davies at NM Incite/Nielson).  Yeah, I’m totally down with that statistic.  Don’t call me – post a status update or Tweet – I’ll be more likely to get it.  From Mark Bard and the Digital Health Coalition: “you can’t control social.”  Will pharma ever get this? And if so, when?  Also, should we be monitoring for things like adverse events?  How much monitoring should we be doing?  As a former compliance and auditing manager, I cringed at this.  If you’ve ever had to fill out an Adverse Event report or write a Periodic Safety Update Report, you know why!

Other cool stuff:  the initial draft of the ePatient Bill of Rights.  I did not participate in this session, but thanks to Bob Brooks of Wego Health for all the details.  Also to Rudy Sims for helping me realize why it’s so important and for taking my feedback on it.  It’s not just about access to my data – I’d like to have access to good data (aka my Personal Health Record on my Aetna profile - FAIL).  A lot of interaction and discussion around ‘Transparent Social Marketing’ presented by Tom Chernaik from CMP.LY.  None of us disagree with being up-front with the data.  How do we guarantee that patients are reading it?  Better yet, how do we know they comprehend what they are reading?  From our @healthythinker, Jane Sarasohn-Kahn – households with disabilities have less access to broadband and hence, less access to information.  A personal one for me to relay back to my autism community friends.  Also, healthcare is “where we live, play, work and pray.”  With so many of us jumping into the ‘social’ health world, this couldn’t be more true.

During lunch, we participated in a live web cast launch of  ‘Is My Cancer Different?’ -  the cool new tool empowering cancer patients to ask their doctors the right questions.  As Ronnie Anderson, CEO of Clarient, said during the presentation “if you’ve seen one cancer, you’ve seen one cancer.”  The more we move into the world of personalized medicine, the more we learn about variations within disease states (even within a single tumor) and from patient to patient.  Not all patients are the same and as patients, we’d like to be treated as individuals and know all of our options.  This holds true for any engaged patient or caregiver dealing with any chronic illness from autism to cancer.

This was the first time I saw Dave deBronkart (@ePatient Dave) speak, although I follow him on Twitter.  His story is so moving from a patient perspective and makes me angry from a healthcare professional perspective.  It shows the power of social media and how knowledge exchange among patients can really save lives.

I ended the day with two of my favorites.  First, an interactive session with Nick Wilson of BodyMedia and a very cool device that measures and records 5000 points of data per minute from your body – things like heart rate, steps taken, blood pressure.  I am so getting one of these to wear during my workouts (and maybe not during my workouts, too).  I’m addicted to gadgets for exercise and wellness, I’ll admit it.  Finally, a lively session with two seasoned patient bloggers, Kerri Sparling (@sixuntilme) and Jenni Prokopy(@chronicbabe).  The discussion was interactive, even a little heated at times, while Kerri and Jenni led a dialogue around how to forge a better relationship with your healthcare team, reminding us that we are all patients.

A great day and great interactive sessions (well worth the large amount of e-mail I had to catch up on when I got back in my office).  A lot of information to digest and ponder in all of my roles.  I’d love to see a working session spin-off from this – one where we can get together and tackle a particular issue, using the skills of all the different folks in the room.  A truly ‘social’ approach to the many challenges of social health.  Either way, I’ll definitely go back next year.