Medicine X Hangover

Reflections on Stanford Medicine X

thumb_img_1126_1024

Larry Chu, founder of Medicine X, giving his final remarks

During a time when technology is in the forefront of healthcare delivery and design, the question is what can technology do for patients, and how can healthcare providers tap into tech to better their practice?

As a patient seeking answers, I found some inspiration at Stanford Medicine X, a conference that explores how technology, social media and innovation can revolutionize and improve healthcare.

What an incredible mix of people at the conference. Medicine X is a thriving ecosystem of people from all disciplines, industries, and sectors. A unifying trait across the board was the sense of interconnected sharing – the fluidity of information, transparency of systems, and ease of connection.

At any given moment, I might have been in conversation with representatives from bio-pharmaceutical companies, architects, anesthesiologists, designers, social media strategists, marketing experts, innovation officers, health care providers, medical device manufacturers, genetic analysts, MBAs, radiologists, concerned citizens, entrepreneurs, PHDs, software developers, patients, clinicians, open-access researchers, holistic healers, strategy consultants, lawyers, nurses, principal user experience designer, project managers, investment analyst, bloggers, scientists, biomedical engineers, journalists, and yes, the list goes on.

While many of the people I met came from such vastly different backgrounds from me, I felt like I had equal footing with each and every attendee. I do not routinely mix with engineers, no less pharmaceutical representatives or high-tech people who thrive on quantitative analysis and “metrics.” I am an artist; I am comfortable brainstorming with designers, illustrators, eccentrics and activists. I was struck, however, by how often I found myself having a meaningful, free-flowing conversation with individuals from any and all sectors.

The experience was overwhelming and transformative.

“Patient-centered” – Medicine X talks the talk but can they walk the walk?

img_20160918_152802343
New friends at Med X! Ally, Thatcher, Nick, Danielle & me

Before I attended Medicine X, I was apprehensive. Much of the “Everyone Included” (ei) rhetoric sounded too good to be true. Patients running the game? In case you haven’t caught on in previous posts, I am a quadriplegic. Not many events are explicitly made accessible to me, and as a patient I must tirelessly self-advocate in places that are not patient-centered. The “ei” brand sounds fantastic, but I set the bar low in preparation for a weekend that would be more in line with my past experiences.

However, once I arrived at Medicine X it was clear that the lingo was not just phonics. The staff at Medicine X practice what they preach, and my caretaker and I were stunned by the sense of community that has been fostered among alumni who were in attendance. This community has grown in part out of the support and ease with which Medicine X includes the patient voice. Several of the talks we attended had a down up structure: patients generate ideas, and are major players in shaping the narrative. Med X is advertised as being the largest all-inclusive conference, meaning patients are at the forefront. For example, Karen Sandler, an executive with Software Freedom Conservancy, needed a defibrillator after a devastating encounter with heart disease changed the course of her work. She decided to refocus her work, providing pro bono legal assistance to people seeking information around the medical devices they were fit with.

New community
img_20160918_165351391

Yoko Sen, a sound artist I featured in my last post, performed at the conference. She was incredible! Read more about her mission to reinvent the sound environments of hospitals here.

In addition to the accessibility of the conference and the thoughtfulness of the staff, I was struck by how warm and supportive the other people who have illnesses were towards me. I made two new friends who have a very special place in my heart; several activists who survived brain tumors, and others who manage type 1 diabetes, and a mother of a child with heart disease. We all shared a common desire to reach out to other patients to strengthen community among people living with disease.

Social media has had a huge impact on me this year. I am now on Twitter and Instagram, I’ve established my own personal blog, and I’ve contributed to the Huffington Post. I was swept up by the momentum of Medicine X and the emphasis on technology & social media as a resource for community-building. These experiences fill me with the desire to become a fierce advocate and activist for those with imperfect bodies.

img_20160918_134550970thumb_img_1121_1024thumb_img_1136_1024

Conference highlights

Aside from the patient-centered nature of the conference and the vibrant community I have discovered both in person at #MedX and online, I wanted to address specific moments that stood out to me over the weekend.

Chronic Illness & Mental Health – I attended a workshop on chronic illness and mental health, where a panel of patients spoke about their experiences. I had the opportunity to meet each and every one of them throughout my time at the conference; their wisdom was inspiring. When we only seek help when trauma strikes; we are unprepared. Our mental health is not automatically present – rather it is a practice we must pay attention to every day. Someone on the panel likened it to swimming; if you haven’t learned to swim and are thrown into the water, you will not stay afloat. Just like swimming – if we don’t practice mental health on a day-to-day basis so that we have skills already formed, we will not have the resources for those tough moments often associated with chronic illness.

Radical Change-Makers – A seminar on radicals – people willing to challenge the status quo in a healthcare environment that resists change — where I learned that saying, “No,” is not a rejection of your good ideas, but a rite of passage. If you are trying to create systemic change, you are going to get knocked down again and again. Rejoice in the “Nos,” because with each one you are a step closer to a “Yes.” I enjoyed this lesson because I have repeatedly been denied the opportunity to implement innovative design strategies to improve patient experience in waiting rooms. I’ve gained a fresh perspective in that I now see the negative responses are a part of a lifetime commitment to dismantling conservative, traditional ways of providing healthcare.

Communication Strategies – In turn, faculty members from the business school lectured on effective communication strategies for negotiating change.

Storytelling Soundscapes – Lastly, the closing ceremony that featured an ambient electronic musician, Yoko K. Sen, was the perfect end to the conference. I featured Yoko in an earlier blog post; she is using her gifts as a sound artist to “a social enterprise to reimagine the sound environment in hospitals,” Yoko incorporated voices from people at the conference.

Inspiration

I am inspired to use art and design to further my mission to transform the narrative of illness, working to expand what it means to live in an imperfect body. I want people to see, hear, and connect with those of us with illness. I want people who have illness to engage their lives with dignity, to see themselves as a source of fascination, full of wisdom and grace.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s