It’s been a fun week here in Mighty Casey Media Land. We kicked off the week a little early (on Sunday) – the 411 on that is available here, and some of the social exhaust is available on Storify here and here. One member of the e-patient posse worried that the guy was gon’ have to enter witness protection, given the avalanche of opprobrium aimed his way from the expert-patient community.
In an email thread among a group of expert patients working on aggregating and curating patient-useable outcomes reporting tools, Dr. Corrie Painter said she had called the Brookings Institution, the think tank where the author of the US News piece that set my hair on fire does his think-tank thing, and left a terse message on the Governance Studies main line about pontificating patriarchal putzes (technical term).
Given my willingness to talk to anyone, any time, if it moves the needle on healthcare system transformation, I went one better and called the *other* number on the guy’s bio page. I expected to wind up leaving a voicemail, but …
He. Answered. The. Phone.
We talked for about 30 minutes, during which I assured him that I did *not* think that Yelp reviews were the ne plus ultra, or even a thing, when it came to outcome metrics on physicians and other clinical providers of medical services. But, as I pointed out in my “I’m channeling Lewis Black, with boobs, in healthcare here: righteous rage + cutting humor = driving that point home!” post, what real metrics are *available* to patients seeking intel on the expertise and outcomes of the doctors they go to for care?
There are PQRS and Physician Compare data sets, but they’re pretty small beer. Physician Compare serves up Medicare data – just *try* to find intel on a pediatrician, or an obstetrician, in that reporting tool.
In a follow-up post of his own, Yaraghi clarified his position on online review sites like Yelp *not* being the right place for medical provider ratings based on medical training, outcomes, or efficacy of care. His closing graf is the money shot for me:
Patients’ involvement in their medical care is the best thing that could happen to our severely sick health care system. Patients should have access to reliable and valid data to help them decide about their medical provider. They should have the capacity to shop around and visit multiple providers. Healthcare is the most important service we obtain in our life and being able to choose who provides it, in my opinion, is a fundamental patient right. Currently available online patient reviews however, are not the correct measure to rely on when making such a decision.
Net/net here: Niam Yaraghi is a guy with an open mind on the idea of patient expertise. In the days and weeks to come, I hope that the e-patient community turns out in force to engage him in conversation, and to make their case for both patient expertise and the deep need for effective, accessible physician scoring – on number of procedures, on patient satisfaction, on recurrence rates, on all stats relating to the efficacy and humanity of their care – that people can use to find the best doctor for their healthcare needs.
I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS.
(c) Lucien Engelen
MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits.
MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion.
My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session:
The rest of the day played out as a firehose of ePatient awesome, including the first presenter to bring me to tears: Sara Riggare, a brilliant woman who is, among many other things, an engineer and a Parkinson’s patient. During the panel discussion on “The Self-Tracking Patient,” and my (somewhat sobby) conversation with Sara afterward, was when I fully realized, even though I’d talked about it last year on one of my blogs, that I had been born an ePatient. Well, maybe not born, but them that brung me into the world also brought me to ePatient-cy. I felt my late father, whose Parkinson’s laid him low, and then to rest, over 10 years ago, standing by me as I listened to Sara talk about her own self-tracking and self-advocacy. My dad was a warrior – literally, a US Navy fighter pilot – and brought that warrior spirit to his battle with Parkinson’s. I’d like to think that Big Mike would be proud of the work I do today to bring sense, and sensibility, to the most human of all sciences: medicine.
The Friday sessions ended with a “What If Healthcare …” panel discussion, conveniently tagged for the Twitter-verse as #whatifhc(click that link for a Symplur transcript of the conversation as it unfolded live). This session is the only one that pressed my buttons in a not-good way, and here’s why: there were a group of white-dude brainiacs, and one not-a-white-dude, on that panel. Don’t get me wrong, I like white dudes. Hell, I’ve married two of ’em (NOT at the same time!). But I found it sort of anachronistic that, as the “dream big” panel on the first day of a Patients Included medical conference on the campus of a major medical school (Stanford Med), the participants on that panel were so very white-dude, with the notable exception of healthcare artist/activist Regina Holliday. Regina herself mentioned the very-not-diverse makeup of the panel during the session. I made the observation on Twitter, as I listened to the panel’s conversation, that healthcare in the US is a great wealth-transfer system … but as a health-transfer system?
Saturday opened with something for which I was utterly unprepared: hearing first-hand about the project that won the 2012 Intel ISEF Prize. Jack Andraka is the 16 year old kid from Baltimore who, at 13, decided that not having a reliable early-detection test for pancreatic cancer was a terrible thing. He resolved to create that test … and he did. It’s been patented in the US, and is in the process of being patented globally. Here’s the first-look video of his hilarious and inspiring call to action for open science:
Frankly, I count hearing that talk, and meeting Jack later that day at the MedX reception on the Dean’s Lawn, as the highest high point of my MedX experience. I told Jack that I couldn’t wait to see what he did next, but that even if he decided to rest on his uber-science-geek laurels with his mesothelin discovery, he’d given a gift to humanity unlike any other since Jonas Salk. Visit his website to keep track of this approachable, funny, huge-hearted young man who has the mind of a god.
The other big high of my MedX time was finally – FINALLY – being in the room with all three of the women who birthed #BCSM, one of the most powerful healthcare communities on Twitter. My ePatient journey may have been started by the voyage with my parents through their health issues, but it was forged into hardened steel by my own breast cancer experience. Connecting with Alicia Staley was one of the things that helped turn my book, Cancer for Christmas, into an Amazon bestseller in ’09. I spent much of the conference touching base with the #BCSM crew, who were in attendance in force at MedX. It was #BCSM Summer Camp!
The conference closed on Sunday with a keynote by Vinod Khosla, “2025: 20% Doctor Included?” Khosla’s viewpoint – which I share – is that technology will provide more reliable and efficient diagnostic tools, removing the mis-diagnosis risk that leads to most medical errors. He also stated that transformation of the healthcare system will not happen from within. Khosla backed up his positions with evidence, and I was nodding so hard in agreement I risked whiplash. It was the perfect close for the epic firehose of forward-thinking that was MedX 2013. Here’s the first-look video of Khosla’s talk:
What will I remember most about my MedX experience? I’ve listed some of it above, but even as I write this post I realize how much more mental food was served up during those three days. There were the conversations that happened over coffee, during lunch, with a frosty beverage in the Sheraton bar. I met people I’d known online for years, but had not had the opportunity to hug and thank for the impact they’d had on my life until MedX put us in the same room.
Amir Dan Rubin – the CEO of Stanford Hospital & Clinics, his master class on quality improvement will inform my hospital-med journo work for years to come
Dr. Marc Katz(I hadda go to Silicon Valley to meet a terrific doc who practices down the street from me – go figure)
What did I learn at MedX? I learned that there’s hope. Hope for healthcare, hope for humanity, and hope for every single person who winds up a patient (and hey, we’re all patients, right?). The key is that medicine is a team sport. It requires the full participation of everyone in every health-related transaction.
So pick up your ball, and let’s play together, shall we?
