06 October 2015

Being an ePatient Scholar at the 2015 MedX Conference

Last week, I had the opportunity to travel to Palo Alto, California (sans husband and kiddos) to attend MedX, a patient-centered medical conference intersecting medicine and emerging technologies.  In addition to my receiving a paid scholarship as an ePatient Scholar, I was asked to be a patient voice as a part of a plenary panel on the future of healthcare journalism and big data.

It was a great honor to sit among such smart people. Our panel was moderated by Dr. Jordan Schlain, founder of HealthLoop.  To my left sat Dr. David C. Miller, program director of MUSIC (Michigan Urological Surgery Improvement Collaborative).  To my right sat Dr. Bob WachterProfessor and Chair, Department of Medicine at UCSF.  Featured on the panel were Marshall Allen and Olga Pierce, reporters of the news organization ProPublica's article called "Surgeon Scorecard."  (Watch this Today show segment to briefly learn more about the Surgeon Scorecard.)

Our panel discussion centered around an article journalists Marshall and Olga recently published titled "Surgeon Scorecard" which used Medicaid data to determine which surgeons around the country had the highest complication rate.  The article hit controversy as many in the healthcare community, doctors especially, have felt like the data inaccurately leads patients and the public to believe this list determines for them who is a "good" or "bad" doctor.

Our panel's discussion of this issue included a conversation about measurement and transparency in healthcare.  Should and how could healthcare providers measure their own work and patient outcomes?  What data, if any, should patients have access to to make decisions of their own?

I shared how we, as patients, need both.  We, as patients, need our health providers to know how they are doing, in comparison to others in their line of work.  And, we, as patients, need to know how our doctors are are doing so we can make fully informed decisions about our care.

Our panel discussion was just a taste of the kind of discussions currently happening within healthcare today. (Once the video of our panel discussion is posted online, I'll link here.)

My experience at MedX was amazing. What struck me the most about my experience at MedX is how valuable the patient voice was to the discussions that were and are being had.  Although I do not have a MD, I felt very much like my voice and experience had an important place in our work together - something I do not regularly feel as a parent of a child with a chronic disease in the healthcare system today.

At MedX, patients/families are treated, not as people who passively receive care, but as people who are well-informed active members of their healthcare team.  Patients are are respected and listened to - they are appreciated for offering insights and stories from which others can benefit. At MedX, it's clear to everyone: doctors learn from patients and patients learn from the doctors.  We're in this together.

I watched as MedX, a 3-day annual conference, gathered together some of the most forward thinking healthcare movers and shakers in the US and overseas (Scotland, Sweden, UK, etc) to discuss a variety of healthcare-related topics such as patient safety, accessibility to data, healthcare innovation, the impact of digital health, the future of medical education, etc.  There were so many amazing sessions to attend and so many smart people sharing what they know.

It was fascinating to learn about the newest technologies and the newest trends in healthcare.  But the single greatest trend I learned about at MedX, the one that clearly as the power to be the most effective in healthcare?  The serious involvement of patients on every level of care.

I think part of the reason authentic patient-involvement in healthcare is still a struggle is because patients don't yet know their own power - their own value to the conversation.  It's so easy, as a patient, to feel the doctor has all the knowledge.  But I am learning the patient has a lot of the knowledge as well, it's just a different kind of knowledge.

I tried to gather some of my favorite nuggets from MedX.  There were SO many.  But, for brevity, I placed them together in a Storify below (click through them to see them all) greatest hope would be that we can eventually bring these ideas to the CF healthcare:

I also wanted to share this short video that was shown at MedX about one of my favorite people in the CF community.   Emily, a CF adult, shows us the power of patients who refuse to settle for the status quo.  Emily shows us that patients in a broken healthcare system don't have to sit back and wait for it to be fixed. We have the power to begin fixing ourselves:

All MedX sessions can be watched online here for free.  Everyone is welcome to join the ongoing join the conversation on Twitter at #MedX (other great hashtags to follow include #epatient, #patientengagement, #CFbigidea, #hcsm).  

Because we're in this together,

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