e-patient reflections: the download on sxsw interactive

i've had the privilege of attending sxsw's interactive conference in austin, tx these past few days. i'm here wearing many hats- health care marketer with a focus on social media and video; patient blogger and online disease community member; and proud daughter supporting her dad as he presents about a topic close to her heart.

my dad presented on a panel about the convergence of patients, doctors and insurers on social media. the idea was to get sparks flying, put everything out on the table and actually have some meaningful dialogue to generate actionable to-do items.

the cast of characters
insurer: michael golinkoff - aetna executive (my dad)
doctor: wendy sue swanson - mom, pediatrician and blogger on seattle mama doc
patient: jamie heywood - co-founder and chairman of patientslikeme

they kicked the talk off with a skit that parodied how bad the health care space is right now for all the players and they ended with a discussion about how everyone can do better.

i've included videos of the skit below. based on the crowd reaction and tweets at #sxehealth, i think it's safe to say the presentation was a big success! (i could be wrong, but i think they may have even trended on twitter!) 

so, what's the role of social media in health care? the way i see it, social media is breaking down the barriers. it's letting people tell their stories and share them with the masses. it's both empowering and overwhelming people with unprecedented amounts of information and connectivity. it's revealing the extent of the problems in health care and perhaps most importantly, i truly believe it is providing the platform for change- to make health care better for everyone.

it was interesting to watch this dialogue from the audience. i've thought and written lots about the e-patient movement and its role in propelling forward participatory medicine. i've seen firsthand how empowering, informative and emotionally cathartic it can be to connect with the CF community on facebook, through blogs and in online communities. i've also hugely benefitted from having a connected doctor who is always only an email away. with any question, concern or CF-related epiphany, i can email him without thinking twice and expect an answer in a matter of hours (or usually, minutes).

truth be told, it was funny to watch a panel of experts discuss a topic that's such a fundamental part of my life. they're involved in health care and social media primarily as professionals, but for me, it's not a choice. it's essential.

CF sucks. a lot. as much as i try to plow forward, head held high with big dreams and goals and a steadfast commitment to living richly and productively, there's no denying CF's constant looming and disruptive presence. the fact of the matter is it's not normal to be staring down lung failure at what should be the peak of my life.

i need social media because nobody gets that like my fellow CF'ers on cf2chat. nobody can joke about the painful absurdities of our lives like my fellow CF'ers do with their dry, hilarious humor in our "CF memes" facebook group. nobody can allay my concerns about esoteric bacteria that suddenly pop up on my sputum culture or instantaneously advise me on how much insulin to take with lunch when i'm having an unexpected low like my fellow CF'ers do in our adult CF facebook group. nobody can coach me through the emotional rollercoaster of life with a progressive disease that robs me of my breath like my fellow CF'ers have done and continue to do in their beautiful, honest and articulate blogs.

so, as a patient, what's social media to me? it's my lifeline. it's my sanity. it's my advisor and supporter. it's my laughter and tears. it's my emotional health and comforter. it's my optimism. it's my realism. it's my connection to people like me and that's worth a whole lot more to me than data, clinical information or even immediate access to my doctor.

social media is about communities and that extends to health care in big, influential ways. i feel immensely grateful to be a part of the CF social media community where i feel that impact every single day.

i'm pleased to report that after these past few days, i'm incredibly excited and truly hopeful that such smart, passionate and committed experts are recognizing social media's power and actively wrestling with how to optimally harness it for the delivery of better health care.

hopefully, they can put on a skit that looks radically different very soon.

beginning skit part 1 (the very beginning is slightly cut off)


beginning skit part 2