Tuesday, January 12, 2016

The Future of Patient Engagement

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The Systemic Juvenile Idiopathic Arthritis that I live with is a rare disease. It's difficult to diagnose and, in many cases, to treat. I know all too well the difficulties one can have living with a rare disease that is potentially fatal. I got into patient advocacy and volunteerism due to the fact that I have to constantly be my own advocate, at work or with my physicians. Since I see physicians in multiple medical systems, a fairly normal issue for rare disease patients, I have to keep track of everything on my own to compare notes with my providers. I have had to seek out physicians who have knowledge on my disease and connect with them, whether in an appointment or via email. I pore through journal articles every week, looking to find new things to share with the readers on my blog and with others living with SJIA or, the adult-onset counterpart, Adult-Onset Still's Disease.

I want to share with you today two rare disease champions who have been instrumental in changing lives due to their personal connections with these diseases. They do so without medical degrees, but with the knowledge and fighting spirit rare disease patients must have.

Emily is a White House Champion of Change and has been involved with Stanford Medicine X. She's also the founder of Emily's Entourage, an organization focused on accelerating Cystic Fibrosis research in order to give patients with rare mutations, like Emily, a better chance at a future.

She's been making the rounds, appearing on The Doctors this week, and she was recently on People to discuss her journey:


In September, I was honored to travel to Stanford University for their Medicine X conference which brings together all types of stakeholders in health care to discuss its future. Being run, in part, by patients, there is a large focus on how the health care system can engage patients and ways in which technology can be utilized to accomplish that goal.

Emily was one of the people I met while there. She is more amazing in person than you see here. Her story is one of resilience and perseverance.

Emily is incredibly unique, but she is not alone on her journey.

People with rare mutations or rare diseases have to do a lot more legwork in order to get a diagnosis, to raise awareness, and to get treatment.

Another great example is Matthew Might, who is on sabbatical from his programming professorship at the University of Utah to serve as a visiting professor at the Harvard University Medical School. He spoke at Medicine X in 2015 as well.

Matt's son Bertrand has been diagnosed with a rare condition called NGLY1 Deficiency. At the time of diagnosis, he was the only case doctors knew of.


As a blogger, Matt began to discuss his son's condition online. This led to finding others who later tested positive for the disorder, helping people to find a name to this collection of symptoms.

These two individuals are incredibly unique, and yet their stories bring up similar notions - the idea that crowdsourcing or crowdfunding could help to find diagnoses, treatments, and cures for many with rare diseases. In fact, the Rare Genomics Institute works on that idea by connecting patients with medical institutions willing to study their illnesses and develop treatments or cures.

The other shared idea here is how integral to our own health we can be. As Emily pointed out in her segment on The Doctors, she didn't want to wait around for the death she had been dealt. Matt couldn't bear to watch his son suffer. These are families affected by major illnesses that chose the advocacy route instead of apathy or ignorance, which would likely have been easier in some ways.

I believe this is the future of patient engagement and advocacy, where people educated on systems analysis become visiting professors at medical schools due to their fighting spirit, and where rare disease patients are able to raise awareness and funding to try to bring research and treatments up to speed for those who desperately need it.





About the author:

Kirsten Schultz is a health activist and blogger. You can read more about her life living with multiple chronic illnesses on her blog, on Creaky Joints, or follow her on Twitter.  


She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event.  ePharma will take place February 29 - March 2, 2016, in New York City.  As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!
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