Whilst at Stanford Medicine X #medx #medxhangover
Stanford Medicine X is the flagship conference in Digital Health which pushes through the convergence between medicine and emerging technologies, by embracing everybody: patients, doctors, researchers, technologists….
I was very proud to take part and have an Ignite Talk on how and why Digital Health evolves with and around the empowered patient.
This post is about what I have found most valuable whilst at Stanford Medicine X (see also my post on the Healthcare Innovation Summit). And I cannot tell you how difficult and unfair it feels, because this event was so intense – with interesting topics and truly amazing people. I felt very humbled and very honoured to have such company. Although I will just brush off a few ideas, this post is going to be a bit longer…
This years theme was Great Expectations, and I could not have resonated more (see also my post All Eyes on Digital Health).
If you want to hop through my post, here is what it is about
- New topics
- Great talks
- Great encounters
- The hangover (spin off post)
In the end
Great eXpectations – New topics
There were incredibly powerful panel discussions, some bringing in new topics. I guess my selection here is based on what I found most humbling, in the sense that I was reminded of how much we take things for granted…
This panel brought to light many aspects of health that are often dropping of the radar in healthcare: independence, autonomy, dignity. I was glad to hear Christopher Scott recommending Oliver Sacks for a deep dive in such matters. Barbara Beskin is such an inspirational person. She made sure to leave our smartphone bent generation with the great advice to mind our posture in the light of a better ageing experience.
There were big-time laughs, and the expected misty eye or two, at today’s Medicine X session on aging and longevity. Natrice Rese, a retired personal support worker, began the conversation with a moving ePatient Ignite! talk about how life for many older adults is less than “golden.”
On the same page, I had the pleasure to meet Michael Fratkin, friend of dear Sue Montgomery, who talked beautifully about palliative care and how technology could help so much in supporting independent and graceful end of life.
@MichaelDFratkin “it has never been harder to die” #MedXpic.twitter.com/tulJvyJIuV
I cannot separate this panel from Tessa Richards beautiful talk on the great efforts BMJ is putting into changing the culture of medical research (BTW, here are her thoughts on this year Stanford Medicine X).
how the courageous @bmj is pursuing their #patientsincluded endeavour by @tessajlrichards her #medx talk https://www.youtube.com/watch?v=ykxd9cWcFyE … 1/2
- Being a patient can drive you take lead in research (Sara is currently a researcher herself). Similar theme is to be found in Emily Kramer-Golinkoff’s story.
- Research outcomes may differ if defined by patient or researcher.
- A better understanding of what patients really need is required (see above BMJ’s commitment in this direction and a wonderful older blog of Susannah’s here). Research has to be grounded in patients’ need.
- So much waste goes on directions that do not improve patient’s life. “Funding is not for patient outcomes, is to produce papers” (Sara).
- Michael told us a bit about how change is happening inside NICE (UK), which engages patients in evaluations from the go.
- “Burden of tracking” – hint for innovators.
@SaraRiggare “the burden of treatment vs the burden of tracking. It’s not worth my time, I want to get on with life” #medx #Parkinsons
- “360 degree access” to research.
@SusannahFox “We want patients to be included in the beginning, but also want patients to have access to research at the end” #medx
- What would be an ideal clinical trial.
@SusannahFox “@patientslikeme is for me a model for change. What other models are there?” #patient #research #pharma #MedX
- Michael believes is very important to consider how more people could be included in research.
@mjseres “majority of people don’t care about research until they have to care about it… how do we get people involved?” #MedX
I somehow connect this panel to the one above, because it deals essentially with the amazing resources, inspiration, wisdom and resilience patients and carers often have. And in the context of an almost beyond understanding harshness of life, they found the most amazing generosity. It is just so much to this point… Emily Lu moderated the stellar panel of Michael Seres, Darla Brown and Molly Lindquist.
Only in healthcare are endproducts not conceived with true understanding of endconsumer #medx @mjseres #doctors20pic.twitter.com/EBwwijvZRZ
“Patients have a resilience and in-built belief that comes across to funders.” @mjseres #medx
@mjseres my darkest time “changed me… in a bizarre way for the better” #MedX #digitalhealth
“I don’t regard myself as owning a tech company. I’m a patient providing a solution to something no one will look at” -@mjseres #MedX
“Who better than to solve our problems in health care than the people who live it and breathe it every day?” That was the rhetorical question posed by Darla Brown, a panelist in a Saturday Medicine X session on patients as entrepreneurs.
Illness & intimacy: How peer-to-peer conversations are identifying and filling gaps in whole-person health
This panel was great for opening up an area not much approached, understood, explored. It is my believe that it is just the beginning, and I am very grateful to Sarah E. Kucharski for leading it.
@AfternoonNapper “I don’t know intimacy before illness ” #patient #pain #MedX
On sex, intimacy, scars, pain, #patients. Amazing discussion @AfternoonNapper @justin_halls @dudleyHUHS @karolynprgpic.twitter.com/UbKXEEoMx3
Here you find two more accounts:
By Ana Santos Today at MedX, a panel of patients, providers and researchers got together with one question in mind: how to reclaim intimacy? SUNDAY, Sept. 27 – Illness, acute or chronic, can have a dramatic impact in patients’ sexuality. Many people experience pain, reduced energy, and changes in how they feel about their body image and intimate relationships.
A Discussion Of Intimacy And Illness At Medicine X: “Embrace Yourself And Embrace Your Normal” | Scope Blog
Medicine X is well known for shining a light on dark feelings and difficult-to-talk about topics, as well as being a safe place to hold such conversations within the health-care community. Last year, a key theme of the conference was addressing the relationship of mental and physical health.
I admit I was still blown apart by the loudest speech I have ever ever heard – Dr. Ben Bahan “Standing Main Stage Talk – Deaf Gain: what can healthcare and society at large gain from the deaf community?” I loved how Alexandra Drane moderated the panel. I am sure this is another topic which will return…
Benjamin Bahan delivered an extraordinary message at #medx on flipping perceptions #deaf. @CBlotner_ same on #genderpic.twitter.com/zlbvQrhUJI
Great eXpectations – Great talks
I have already mentioned Tessa Richards, Dr. Ben Baham and Michael Fratkin. I had the pleasure to hear Dr. Gina Neff – I loved her disruptive view on disruptive innovation.
I loved Dr. Bonnie Feldman‘s presentation on immunology. She is doing amazing research, very impressed.
#WhatIf We Could Think Differently for Autoimmunity – Stanford MedX 2015 (with images, tweets) · DrBonnie360
DrBonnie360 brings the Lonely Voices of Autoimmune Disease back to Stanford Medicine X 2015 to present and collaborate on ways to bridge the autoimmune abyss. Through the #WhatIf workshop for #medXautoimmune, the bridge’s foundation begins to takes shape.
Wonderful Denise Silber gave a powerful talk on state of Digital Health across Europe. I loved to hear some of some stories behind the innovative European Digital Health startups: MySugr, Esperity, i-Nside, Tavie, or Fightthestroke.
Denise Silber presents the Doctors 2.0 & You update based on digital health start-ups in capitals around Europe.
I guess, up up there I’ve placed Meg Maley‘s talk.
@megamaley informs us that #Canada includes #distress as the 6th vital sign – here is a resource http://www.ncbi.nlm.nih.gov/pubmed/21456060 #MedX
Was it because the conference was coming to an end…, Meg had a soul-stirring presentation.
@megamaley stunning at #medx. On #healing without #curing and #curing without #healing. @CanSurround #doctors20pic.twitter.com/FwzEX45aLo
As if I was not emotional enough, at the end we had Michael Seres and Larry Chu. And they can both take you there… with a smile.
@larrychu & @mjseres know how to send you off with a smile and… a #medx hangover kit :)pic.twitter.com/sUyvL7qE2C
Great eXpectations – Great encounters
I was so happy to reunite with people I knew. I had the pleasure to meet many of those I’ve been admiring in the Digital Health sphere. And I discovered many beautiful, passionate people. Such a long long list! Not to mention the people I wished I had more time to get to know.
Cheering for @louise_schaper ! She ran Ignite Talks so gracefully and supportive! Superstar! @StanfordMedX #MedXpic.twitter.com/j8JIye5nuc
There is so much energy in Digital Health, so many great minds and hearts coming together.
Of course, we had great fun!
Did u know they grow pumpkins in Burma? #medx dinner with extraordinary @health20Paris @pamressler & @colleen_youngpic.twitter.com/bn4K912J7n
We crossed the pond #pinksocks @L_Macnaughtan #medx @StanfordMedXpic.twitter.com/5OEIdWjQWF
The impromptu #MedX dinner crew, featuring these wonderful new friendspic.twitter.com/fDGa61vMTW
In the end
Certainly, at Medx you get immersed with the latest and most advanced technologies and topics. But I believe that the transformative effect of this conference relies on the joy you feel from people being there, so involved and empowered, and on the fact that it serially confronts you with taken for granted assumptions or taboo aspects of life, in the deepest sense.
I can say Stanford Medicine X is a movement. It has an amazing ethos, it creates loyalty, and it is incredibly inclusive. The hangover kit makes a lot of sense.
So hard to say good bye, especially to Zoë Chu!
Thanks @larrychu & @StanfordMedX for such an amazing time! #medx #medxhangoverpic.twitter.com/IDxtdY3Veq
Until next time!