I’ll be honest. I had no idea what to expect when I was headed to MedX this weekend. What I did know is that an abstract that my rare friends and I put together was accepted, and we were to present it at Stanford University’s MedX Program.
Me. A rare mom. Talking about Hannah, Gaucher Disease, and the entire rare disease community to healthcare leaders on the Stanford University campus. This was exciting and intimidating. I’ve spoken in front of audiences about rare disease many times over the past 5 years, but for some reason, this one gave me a few butterflies. But when you speak at a rare disease conference, you are preaching to the choir – they get it.
But this audience was different. Would they get it? Would they see why we were so passionate about our rare disease journeys and want to learn more?
Dr. Larry Chu, the executive director of the MedX program, kicked the event off with words that filled me with confidence and excitement. “The purpose is to bring stakeholders together. Inclusivity has to start somewhere.” Patient engagement, a term that our rare disease community fights for, was one of the priorities for this program.
How do we teach healthcare professionals to involve the patient and caregiver experience? What changes in the medical schools need to be made to create an understanding that patients are the physician’s most important partner when it comes to their care? How do we change the philosophy that medical specialties work best in silos?
The sessions focused on innovative strategies and new learning styles that have been applied in medical school institutions such as East Tennessee State University. Although they admit that the program has a way to go to be more fully integrated, the implementation of having specialties get out of working in silos is a huge step towards understanding the totality of a patient’s needs.
Our session came later on the first day. Kristen Smedley (Curing Retinal Blindness Foundation), Monica Weldon (SYNGAP) and I shared information on rare disease resources, opportunities for medical students to get more exposure into rare disease, and we ended the session sharing how important social media is to each of our disease groups and to the entire rare disease community.
The response from those who were there was incredibly positive. The three of us walked away from that presentation with smiles on our faces, knowing that we were able to share our stories and talk about the rare disease community…at Stanford University…at Med X.
The biggest takeaway from this event was not the excitement of our session (which was really high), but it was that there are those in the healthcare education community who realize that change needs to be made in how medical students (and established physicians) engage with the patients they treat. They recognize that the patient’s experience and contribution are invaluable and are working towards programming and initiatives to spread this.
We, the rare disease advocates and those healthcare leaders at MedX, are all working towards the same thing. Finding ways to have the patient as a partner in their healthcare and to break down the existing system of specialist silos so everyone can work towards a common goal…enhancing the quality of life for the patient.
At the end of the day, isn’t that what healthcare is about?
And finally I, a rare mom to an amazing little girl named Hannah, got to present her story at #MedX.