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…

Growing Up, Aging, and Adjusting

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.

Living Long And Living Well: A Conversation On Longevity At Medicine X | Scope Blog

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.

Lorena Macnaughtan on Twitter

@MichaelDFratkin “it has never been harder to die” #MedXpic.twitter.com/tulJvyJIuV

Going from researching patients to patients researchers?

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).

Lucien Engelen on Twitter

how the courageous @bmj is pursuing their #patientsincluded endeavour by @tessajlrichards her #medx talk https://www.youtube.com/watch?v=ykxd9cWcFyE … 1/2

The panel was moderated by Susannah Fox and together with Michael SeresSara Riggare and Elizabeth “Eli” Pollard created magic. Some ideas:

  • 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.

Lorena Macnaughtan on Twitter

@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.

Stanford Medicine X on Twitter

@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.

Lorena Macnaughtan on Twitter

@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.

Lorena Macnaughtan on Twitter

@mjseres “majority of people don’t care about research until they have to care about it… how do we get people involved?” #MedX

Patients as entrepreneurs

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.

Denise Silber on Twitter

Only in healthcare are endproducts not conceived with true understanding of endconsumer #medx @mjseres #doctors20pic.twitter.com/EBwwijvZRZ

EmilyKramerGolinkoff on Twitter

“Patients have a resilience and in-built belief that comes across to funders.” @mjseres #medx

Lorena Macnaughtan on Twitter

@mjseres my darkest time “changed me… in a bizarre way for the better” #MedX #digitalhealth

Stanford Medicine X on Twitter

“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

From Patient To Entrepreneur: Three Medicine X Panelists Offer Advice | Scope Blog

“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.

Lorena Macnaughtan on Twitter

@AfternoonNapper “I don’t know intimacy before illness ” #patient #pain #MedX

Lorena Macnaughtan on Twitter

On sex, intimacy, scars, pain, #patients. Amazing discussion @AfternoonNapper @justin_halls @dudleyHUHS @karolynprgpic.twitter.com/UbKXEEoMx3

Here you find two more accounts:

When Illness Enters a Patient’s Life, Intimacy can be a Casualty

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.

Misconceptions and Misperceptions

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…

Lorena Macnaughtan on Twitter

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.

Doctors 2.0 & You @ Stanford Medicine X 2015 (with images, tweets) · Doctors20

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.

Lorena Macnaughtan on Twitter

@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.

Lorena Macnaughtan on Twitter

@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.

Lorena Macnaughtan on Twitter

@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.

Lorena Macnaughtan on Twitter

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!

Lorena Macnaughtan on Twitter

Did u know they grow pumpkins in Burma? #medx dinner with extraordinary @health20Paris @pamressler & @colleen_youngpic.twitter.com/bn4K912J7n

Bill Kelly on Twitter

We crossed the pond #pinksocks @L_Macnaughtan #medx @StanfordMedXpic.twitter.com/5OEIdWjQWF

EyeSteve MD on Twitter

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!

Lorena Macnaughtan on Twitter

Thanks @larrychu & @StanfordMedX for such an amazing time! #medx #medxhangoverpic.twitter.com/IDxtdY3Veq

Until next time!

Copyright 2015 Lorena Mcnaughtan. All rights reserved.
graphic design by Liana Oprea