Two weeks ago today, I was deep in the first day of Stanford’s Medicine X 2013 conference. I started the day in a large conference space, complete with a stage, high-tech lighting and video, control board, and several hundred people from around the world. This was very different from last year’s Partnership with Patients Summit, with our seventy attendees, refurbished casino setting, and scrappy self-funded attitude. Except that it wasn’t all that different after all. When I blogged about my experiences at the PWP Summit, I found myself reflecting on several key issues that came up repeatedly throughout the three days of MedX:
1. Our stories matter. Stories are one of our most powerful tools. Whether it is the story of a patient’s experiences, or the story of a provider’s motivation to help, or the story of an advocate’s struggle for access and parity–our stories contain the human elements that compel attention and action. With patient stories at the heart of MedX, this message came through loud and clear again.
2. Relationships built online can bring as much value, joy, and connection as relationships built “in person.” This year, during MedX, you could consistently hear greetings change as conference attendees recognized one another’s Twitter usernames. I heard one person describe it as, “getting the chance to spend time with all the best friends I’ve never seen.”
3. Patients have an important role to play in educating themselves, one another, and their health care teams. When you have a team approach that treats the patient’s knowledge as a valued piece of the treatment planning process, you get better outcomes. When experienced patients guide and mentor new patients, they can ease some of the stress and isolation that accompanies a new diagnosis. When patients and family members who have suffered medical harm use their grief as fuel to seek eduction and change, that creates a new light in the shadows of bureaucracy.
I also found myself being presented with a few new themes, things that came up over and over.
1. All of us may benefit from remembering that we have more similarities than differences. People with very different physical diagnoses struggle with many of the same social and emotional challenges in living with their illness. Health care providers and technology developers will also spent at least some part of their life as patients. It is important not to let our language divide us artificially.
2. We are dealing with a tension between the need to slow down and really hear one another and the pressure to adapt new technologies, be more efficient, keep up with rapidly changing clinical information, and deal with practical realities of financial issues. Naming this tension, and remembering that we are more alike than different, may be a critical step in solving some of the challenges we face.
3. We still struggle to get good representation of marginalized groups in these efforts to change and move forward. This year’s Medicine X did a fantastic job of including and respecting patient voices. However, as fearless advocate Regina Holliday stated during one panel discussion, “We are talking about the importance of respecting diversity, but I’m the only woman on an all-white panel–and that doesn’t touch issues of financial means or health literacy.”
4. The mental health field has so much to bring to the table in this effort to change and improve health care. I heard many attendees talking about the value of patient stories–mental health is centered on the story. I heard speakers talk about the critical lesson of asking if they “got it right” when summarizing patient experience. This person-centered reflection has been part of introductory therapy training for decades. In addition, when we aren’t talking about the impact of mental health factors on patient education and health decision-making, we’re missing a huge part of the picture.
I’ll be thinking and writing about the lessons I learned at MedX for a while–there was a lot to take in, and I had the privilege of being exposed to some brilliant and passionate folks. If I’ve caught your interest, the amazing team at Stanford has created a video archive that will let you hear some of the programs first-hand. In addition, Dr. Catherine Rose has begun a blog round-up of MedX-related writing.
So now, I’m curious to hear from you. Were you at MedX? Did you want to be? What do you think of these themes? How should we move forward? What did I miss?