Toward a New Science of Patient Engagement
Pathways, a Scientific American magazine, has a long new article, The Rise of the Empowered Patient.
Fittingly, I’m just starting a full day meeting of the new Proleukin Patient Advisory Board in San Diego, so I haven’t read the article yet. More later.
A quick note on site updates as a busy Fall season begins – new videos and new speaking appearances:
I think e-Patient Connections is the highest value business conference for how patient engagement can transform healthcare. Conceived by former pharma marketer Kevin Kruse, last year it attracted a hybrid audience: almost half of attendees were in public health and non-pharma sectors. All came to understand connecting with empowered, engaged patients. It was a high quality event, with smooth logistics and facilities, despite being its first year with a skeleton staff.
This year I’m speaking in the opening keynote on 9/28, and I gladly agreed to participate in this new video. I want to say why.
As regular readers know (here and on my personal blog and e-patients.net), I think healthcare transformation is both a need and an opportunity. We desperately need to stop the cost spiral, we need to much more effectively connect clinicians’ skills with the patients and families who need them, and we need to improve quality and eliminate medical errors.
Innovation has turned many industries inside out – why not healthcare? Because we’re missing something. When smart people work hard for a long time, unsuccessfully, it’s a good bet they’re overlooking something fundamental. I believe it’s that the engaged patient is a valuable and underutilized resource, and most businesses don’t get it. So they operate, leaving a worthy resource untouched. This resource blindness constitutes waste.
E-Patient Connections 2009 taught attendees how to understand the value of connecting authentically with e-patients. I encourage people to attend.
Full disclosure: I receive no fee from this conference, just travel expenses. My speech will be inside the keynote by Klick Pharma, a client who has me on a small quarterly retainer. I support this conference for exactly the reason I said – it’s a smart, valuable event, addressing a vital aspect of making healthcare more effective and more efficient.
As I build my new career in healthcare, speaker fees are my main income. Here’s one I did for free.
Usually when I speak, one of the first things I have to say is “Trust me, your time will come. ‘Patient’ is not a third-person word.” Well, I got to skip that part in June when I spoke to a bunch of people who already have my disease. And boy did we surpass the normal subject matter.
The event was the third annual Kidney Cancer Symposium sponsored by the DF/HCC, aka the Dana Farber / Harvard Cancer Center. That mouthful includes my hospital, Beth Israel Deaconess. Speakers included my doctors, surgeon Andrew Wagner and oncologist David McDermott. (With MDs and Mxxx’s up the wazoo; I love those guys but I gave up on keeping tabs on their credentials. To me they just saved my life.)
They invited me to speak about being an e-patient. Couldn’t turn THAT one down. 35 minutes:
Immense thanks to them for making this event FREE (including lunch) to all patients, and offering the video for free distribution to all who weren’t there.
They say the videos of other talks will be available on their site shortly – with full credentials for the doctors, probably. :–) Thanks to them for letting me have it first!
Update: the questions were answered (thank you all!) and the book’s now available on Kindle. Buy some now!
We have many, many requests for a Kindle, eBook (Sony) or iPad version of Laugh, Sing, and Eat Like a Pig, and the time has come to git ‘er done. BUT (and it’s a big but), for this book there are decisions to be made, so it’s time to crowdsource: what’s our best approach?
I’ve never done this, so correct me or make suggestions. [Read more…]
Full title: “Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it)
Thanks for the incredible response!
It’s the approach I chose to take to the news that I had a lethal cancer – a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:
In my online community I told people “If I ever write a book about this, that’s what I’ll call it.” And here we are.
Admittedly, that’s not a conventional approach to a deadly disease. But that’s the point. And the whole story’s true.
4,000 people a day (in the US alone) discover they have cancer, and face that moment of “What on earth do I do NOW??” I know that feeling. Some look for what to do next; others don’t even think they can do anything — they just think they’re screwed and go into depression. This book is about hope, getting it in gear, and going “e.” (E-patients are “empowered, engaged, equipped, enabled, and educated.”)
I’m committed to a world where healthcare works better – and not just for patients but for the people whose work is to deliver care. I agree with the words of Warner Slack MD, who said patients are “the most under-utilized resource” in health IT, and I think it applies to all of healthcare.
Healthcare today has unprecedented challenges. Let patients help (which a year later became my TED Talk, then my next major book).