precision medicine

Wellness Wednesday: Stanford Medx 

I just knocked something off my bucket list. 

Stanford Medx is a multi-day conference on innovation in health care. The conference is akin to it’s older and more popular cousins TEDx and TED, programs which are available online to everyone and which deal with topics in technology, entertainment and design, really all the big issues. 

Medx brings together people interested in moving medicine to a new and better place. It’s themes are people, technology and design. I would like to share with you some of the material that I encountered and the people that I met, together with a few images. 

On Wednesday my first day, I travelled. It is always an entertaining shock to change biomes so quickly, going from the alpine to the sonoran in little more than a couple hours. From cool pine I went to warm eucalyptus. After getting settled, I attended presentations and a workshop at the D school - The Design School on the Stanford Campus. There I met designers, architects and medical people all coming together to make buildings, objects, and even procedures which would make getting medical care more effective and pleasant for patients and caregivers. I met a women who is involved in renovating the Women’s and Children’s hospital at Stanford, just as I am at my hospital. I also met the grandson of Charles and Ray Eames who reviewed principles of design though a survey of his grandparents’ work. I also met the mother of an unexpectedly premature baby who had struggled with expressing colostrum. She had, as a result, developed a clever and inexpensive device to modify existing pumps to make them more effective. We expect its use to become widespread. 

Day two was a workshop on shared decision making. This was meant to be decision making between anyone and anyone else: doctor-patient, doctor-nurse, and family member to family member. Shared decision making was a key theme which dovetailed into one of the main themes of the conference, EVERYONE INCLUDED.

Decisions from the top down can be problematic, and partake of hierarchy. Hierarchy for its own sake is to be banished from medicine. Effective communication, and therefore better results, satisfaction and even safety grow out of shared decision making. This was amply explained an demonstrated across all the varied content of the conference.

Communication needs more than clarity. To be optimal, it is two way, and involves empathy. EMPATHY was another key theme echoed over and over again. As physicians, engineers and designers, we must employ empathy in all our thinking. We need to ask the patients and the users for input at all stages of development. Such a process creates more user satisfaction and better results. 

On day two, we partnered up. Our group was composed of the professionals I mentioned, but also of special “ e-patient scholars”. These were medically sophisticated patients with serious chronic medical conditions who could speak to us about their long experience in the medical system. They were there to help us see through their eyes. I was paired with an older woman in a wheelchair with end stage MS and lupus. Since I have lupus we exchanged notes about that. But it was her MS that was making the critical problems. She spoke about her end of life plan. Even so, she was as pleasant and sparkling as a person could be.

On days three four and five we had presentations from morning until evening, often rapid fire. That is when the conference really took on a life of its own. The conference designers were smart. They had substantial breaks every hour or two, and provided food, and tables, and encouraged everyone to live tweet the conference. The session to break ratio was optimally dialed for stimulation and interaction. All the speakers made themselves accessible, so not only did you hear these phenomenal stories, you met the phenomenal people. Bread was broken and contact information was exchanged. 

Key themes were as follows: 

  • open medical data, especially genetic data
  • open research data 
  • the quantified self 
  • gamification of healthy lifestyle goals
  • getting patients, doctors and researchers together, often through the internet
  • patient education, often self education, through apps and the internet
  • collaborative and integrative medicine
  • collaborative end of life planning

A lot of this came together under the topic of PRECISION MEDICINE. This means care tailored to one's precise condition, down to the genes if possible. It also means giving exactly the right amount of medical care, not too much, and not too little. It also means care tailored precisely to the patient’s wishes. Finally it means oversight so that care dollars are used optimally. 

By far the most stunning presentation was that of Dr. Lucy Kalanithi, the widow of Dr. Paul Kalanithi, Stanford neurosurgeon who wrote “ When Breath Becomes Air”. Her presentation detailed the reality of love and connection despite suffering and death in a way that I have never imagined. Her presentation had more power than any I have ever heard. I recommend the book. 

Besides being stunned, I was also charmed. I got to meet so many delightful people who were also talented beyond measure. The same people were uniformly willing to share their insight and experience. Noteworthy among these was Dr. Wendy Sue Swanson, Seattle Mama Doc. She is a Pediatrician, mom, and writer extraordinaire. Check out her website, blog, and book " Mama Doc Medicine".

It was also great to meet Dr. Kyra Bobinet, who shares my interest in helping patients realize their goals in fitness, nutrition and health in general. She told me that everything she knows is in her book, " Well Designed Life". I didn't believe her but I can't wait to read it. 

Medicine is moving forward folks, and you will want to come with it. Medicine needs your input to be what it needs to be. Monitor yourself. Get your health data. Try to connect with your caregivers. Tell your story. Listen and see an alternative point of view. Have a discussion.  This is the basis of the future of medicine, medicine 2.0. 

Not nearly everything from the conference is uploaded, but a Stanford MEdx youtube channel exists. Check out the link below and I know you will be inspired. 

https://www.youtube.com/channel/UCK1chhgXNHf7iB5mlqzXODA