“Doctors go to med school to become doctors, but patients don’t go to patient school to learn to be patients,” shared 19-year-old Auburn University student, Morgan Gleason. Gleason was diagnosed with a rare autoimmune disease when she was 11 years old and has spent an unfortunate amount of her youth living in hospitals to treat her disease. She became nationally known when one of her vlogs (video blogs) she recorded during a hospital stay went viral on YouTube. Her vlogs focus on the experience is of the person with the diagnosis, such as this popular one entitled “Why does everything beep?” Now after appearing in Forbes, Huffington Post, Time and many others publications she, like the rest of the speakers at the What’s The Fix? conference, has dedicated her life to patient advocacy.
Healthsparq recently brought together an impressive line-up of patient advocacy experts, like Gleason, to the inaugural What’s The Fix? conference hosted at the Cambia Grove. This conference brought together people who are changing health care for the better, from the outside in. From Dana Lewis, who created her own open-sourced artificial pancreas to help make living with diabetes more like driving an automatic car rather than a stick shift, to Fred Vogelstein, who according to the FDA and DEA had to buy a 957lb safe to store the cannabis tinctures that curbed his son’s epileptic seizures, these stories shared merely begin to scrape the surface of what the patient and caregiver experience.
Conference keynote speaker, Susannah Meadows, described the true grit it takes to be a patient advocate but pointed out the silver lining – that progress is being made and the patient is becoming the center of care, citing the work of Beto Lopez and Andrew Richards who are charged with “building the medical school of 30 years from now, not 30 years ago.”
If you weren’t one of the 500+ people watching these dynamic speakers during the live stream on June 14th, not to worry. You can watch all the sessions online here.
After watching the sessions, think about commitments you’re willing to make and how you too can play a role in helping to fix health care. You can see commitments from conference attendees here and you can download your own commitment cards to make and share your commitment on social media with #WTFix.