Medicine X: The Intersection of Medicine and Emerging Technologies
It’s about change.
It’s about the belief in change.
It’s about collaboration across narrow fields of interest to bring change.
Last month I had the honor of being an ePatient Scholar at Stanford’s Medicine X. MedX, I know, exists in a bubble. It’s a bubble filled with doctors, researchers, and high-tech professionals who are prepared to put collaboration at the center of what they do, and who invite patients to the table as we explore the future of health, wellness and health care. It’s a bubble filled with people who recognize that where we are isn’t working and where we’re headed isn’t thoughtful. Despite rapidly emerging health care technology and the growing pace of medical research, if we can only forge a new path if we stop following the same old map.
The collaboration needed to move forward came in many forms as we listened to one another, sharing our tales and challenges and dreams. The conference was rich in both content and exchange, as idea after idea was shared both from the stage and within the MedX community. Here are my highlights…
#whatifhc
The “What if health care…” hashtag was launched in January with a simple tweet by Michael Seid (@michaelseid11) inviting us to imagine what health care might look like.
What ensued was an open conversation about needs and hopes from the perspective of patients, providers, researchers and even institutions. Here is just a peek at what happened:
What if health care had a reset button?
Medical Schools: What if medical schools were based in the study of sociology or the humanities, or if med students were taught to use social media as part of their training?
Doctor-Patient Relations: What if the doctor-patient relationship also included a knowledge expert/advocate to make sense of all the data that is relevant to the patient, or if patients had open access to their electronic medical records (EMRs)?
The question:
led to a conversation about how transparency, dreaming big, and best practices being shared online can create change on the ground.
Some other questions include “What if price weren’t an issue in seeking care?” and
There was an empassioned conversation about
“What if end of life and palliative care were part of the system?”
where it was acknowledged that this requires major cultural shift leading us to deeply accept the reality that we are all going to die so that speaking and planning becomes normalized within families.
Want to know more: Check out
Jack Andraka
#RockStar. WIse. Pure inspiration! I can’t really add much to this, except to say that I found Jack studying later in the day and told him how grateful I am that he’s putting his energies in the area of health care!
And in case you didn’t watch, not only did Jack tell his story, but he also addressed the very critical issues of paywalls that prevent patients, and even scientists, from accessing state of the art information about medical research.
Here’s my favorite quote:
“Scientific research should be as accessible as iTunes and the world of pop culture… Why are scientific articles 35 times the cost of the latest Katy Perry single?”
Many patient advocates have long been aware of this challenge; articles can cost the individual anywhere between $35 and $100s. It has gotten so problematic that Harvard University, one of the single wealthiest universities in America, issued this statement last year:
“[M]ajor periodical subscriptions, especially to electronic journals published by historically key providers, cannot be sustained: continuing these subscriptions on their current footing is financially untenable. Doing so would seriously erode collection efforts in many other areas, already compromised.”
Master Class
I was a bit puzzled by this “master class” business; couldn’t quite get a line on what to expect. I read up on my choices and signed up for those I thought were interesting. It was only later that I discovered that the class would include about 15 students, hand-picked by the instructor. When I got the noticed that I was invited to attend Susannah Fox’s class on Participatory Research I was thrilled!
The focus of the conversation was on engaging patients, meeting them “where they are at,” and listening more than talking. We talked about how the internet is forcing a change, that research cannot remain a one-way street, but needs to be become a collaborative effort. The goal is to support these voices as they emerge, creating opportunities for people to engage.
http://storify.com/SusannahFox/master-class-on-participatory-research
So, just a few of the highlights from the stage, if you will. And equally as rich are the connections and relationships that have I had the honor to build – patients, providers and dreamers of what healthcare can be…
regrounding 
Oct 15, 2013 @ 15:52:53
Thanks for representing patients at MedEx and for sharing the experience here with us!
Oct 15, 2013 @ 16:42:52
I am lucky for the chance to have done so!!
Oct 15, 2013 @ 20:09:36
sometimes we speak so excitedly about what’s “on the horizon” – but your post illustrates that so much that will propel the revolution in health care is already here! exciting, but such a challenge to make it all come together. thank goodness you and other inspired and committed advocates are able to come together and are really making progress happen. thank you, lori for sharing such an exciting experience, and for posting the videos.
love and light, and gratitude, too
Karen, TC
Oct 21, 2013 @ 07:48:34
Lori,
Your thoughtful perspective brought so much to the conference, and it’s a great reminder–and a “regrounding” to point out that shifting the paradigm will take time, effort, and a willingness to step outside the bubble.
Much love,
Ann
Oct 21, 2013 @ 07:57:26
Great post! And thank you for the kind words about the master class. It was a challenge for me to take on that role and create a seminar about methods, which is so different from presenting findings.
The #whatifhc panel is also sticking with me, possibly because it took so many unexpected turns. I wrote a bit about what I thought on my blog if you want to check it out:
I’d be interested in your thoughts about the dynamics among the panelists and the moderator.
Oct 25, 2013 @ 10:21:34
You should watch PBS’s Independent Lens film “The Waiting Room”. Talk about needing to be reset! Makes me beyond thankful for my health coverage even if it’s not perfect!
Nov 08, 2013 @ 09:17:58
what an empowering post and what an honor to have been included. this is exciting and challenging but most important, it gives me HOPE.
Nov 08, 2013 @ 13:20:29
Thanks! I, too, am hopeful. And will remain so for as long as I’m still in the game, if not longer!