MedX: Empathy, Patient Stories, and Empowerment

"Medicine X is a catalyst for new ideas about the future of medicine and health care. The Medicine X initiative is designed to explore the potential of social media and information technology to advance the practice of medicine, improve health, and empower patients to be active participants in their own care."  - Medicine X website

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Last month, the Patient Revolution team was at the Medicine X (aka MedX) conference in Stanford to facilitate a workshop "An Exercise in Empathy: Creating the space for careful and kind care."  The workshop was amazing, with a small but nimble group of attendees joining in for a conversation centered on a series of empathy cards.  The conversations were rich and helped shine an empathetic light on different perspectives, breaking down silos and barriers and helping people see one another as people, despite societal labels like "patient" and "doctor."

Patient Revolution director and MedX co-presenter Maggie Breslin said, "it was great to bring together a group of patients and clinicians and create a space for them to reflect on and share about on their own experiences. The places of agreement, the moments of disconnect, they all spoke to the complexity of care and the reasons why scripts and standardization will never be the answer to helping complex people manage complex lives."

Co-presenter and Patient Revolution board member Kerri Sparling agreed.  "After 31 years of living with type 1 diabetes, I know that empathy breeds better understanding and ultimately a better healthcare experience for everyone involved.  I'm excited that the Patient Revolution is helping change the clinical encounter from the ground up, empowering patients and doctors alike to see one another as real people with an emotions invested in health outcomes."

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But the Revolution team wasn't just there for the workshop; we were taking in the main stage talks, attending workshops, and chatting with patient advocates in attendance.

"I found the variety and scope of patient voices to be a real success of the conference, particularly those that were challenging in some way to a traditional and/or clinical point of view," said Maggie.  "Alice Wong's talk which asked who gets to decide how gene editing is used and which disabilities are allowed to exist was the most resonant of these for me. It was a reminder that suffering is not binary and exists along with joy and fullness and that making assumptions about someone else's experience almost always sets you up to be wrong."

Maggie was also impressed with how patients are taking the lead in changing healthcare.  "Dana Lewis' Open APS project was a powerful example of patients developing products in line with the principles of Minimally Disruptive Medicine - to respect patient capacity and minimize treatment burden. Seeing the work to make that a reality, despite all the barriers set up to make it hard if not impossible. I found it really inspiring. A testament to what people can do when they push on the system."

"It really is something to see patients take the stage and tell their stories.  So much of what I've experienced in healthcare sees the clinician's perspectives as 'the right perspective,' not taking the patient's lived experience into account when assessing treatment options, next steps, etc," said Kerri.  "People talk about how patients are at the center of healthcare but the reality is that we're barely considered part of the hierarchy at times.  I'm excited to see a real revolution take place, where patient voices are as dominant as all other stakeholders, speaking their truth without hesitation or fear."

The Revolution is here.  Are you ready?

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