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“Patients Shouldn’t Be Just ‘At the Table’ – They Should be Planning the Meal.”

Updated: 8/14/21 6:00 amPublished: 10/5/15

By Nicole Kofman

Twitter summary: Some of our favorite quotes from Stanford MedX 2015

This was our first year attending Stanford Medicine X, a patient-centered conference whose guiding principle is to include everyone in discussions about healthcare. We were inspired by the dozens of presentations given not just by the usual clinicians and researchers, but also by patients, advocates, and innovators within healthcare and medicine. Here are some of the most thought-provoking quotes from the conference:

On democratizing medicine:

“In only one state do patients own their own medical data. Doctors don’t believe that patients can handle getting their data… It needs to be considered a civil right.” – Dr. Eric Topol, author of The Patient Will See You Now

“When we share our data, we get back support from others. Support can be the most important medicine.” – Steven Keating, brain cancer survivor

“Being able to access my data isn’t enough. It needs to be in a format I can understand.” – Steven Keating

On precision medicine:

“Having engaged patients who will be partners in research, not just participants, is at the core of this effort. Patients shouldn’t just be ‘at the table’ – they should be planning the meal.” – Claudia Williams, White House Office of Science and Technology Policy

On patient engagement:

“For me, patient engagement means not being called in for my opinion only at the last stage. Engagement is about letting us partner and really make the most of those synergies.” – Emily Kramer-Golinkoff, cystic fibrosis patient advocate           

“Patient engagement is about blurring the line between patient and scientist. We have to take down these paywalls too – people need to have access to the latest scientific literature.” – Matt Might

On digital health and wearables:

“I think we talk too narrowly about digital health – it’s going to connect much more broadly to every aspect in our life…It’s not just about monitoring.” – Shawn DuBravac, Consumer Electronics Association

On reforming the healthcare system:

“It’s wrong that patients die from problems that we could have prevented addressed earlier. Why don’t we actually talk about this? We can make a major change as soon as we say it’s wrong and then do something about it.” – Dr. Robert Pearl, CEO of The Permanente Medical Group

What do you think?