A fun way to communicate patient experiences

Jill Sisco and Stephanie R. acromegaly patient leaders with the Crinetics team

The perception that scientists and healthcare professionals do not understand what patients go through when dealing with disease, particularly chronic disease, was the focus of a refreshing exercise this past month at Crinetics Pharmaceuticals.  To mark acromegaly day, Crinetics, which is developing an oral drug for the disease and has several other drugs for pituitary disease under development, read more about these drugs here, devised an activity to show its team members what might be like to have to deal with everyday acromegaly challenges such as fatigue, joint pain, headaches, and other insidious conditions.

Crinetics founders Steve Betz and Scott Struthers

All employees, including scientists and executives, were asked to take brakes to signify fatigue, or walk longer to show inconvenience, or stop working and wear a bandana for 45 minutes to illustrate a headache, or wear a blanket to illustrate unusual body temperature regulation, etc.

Stephanie Kallay, director of patient advocacy at Crinetics told me they had a ton of fun doing this.  “It was so helpful for many who work every day looking at molecules and petri dishes, and who intimately understand the ins and outs of pituitary receptors, to do things that remind them what it is like for patients”, she added.

The day was also highlighted by Jill Sisco and Stephanie R, both patient leader advocates.  They gave talks about what it’s like to live with a disease like acromegaly, where so many related conditions can affect quality of life.

Kudos to Crinetics for doing this!  In this day and age, where so much ink is devoted to patient-centric programs or voice-of-the-patient initiatives, it is nice to see some practical applications.  In my book, always great to put your activities where your mouth is.

Stay tuned for our upcoming podcasts series ” From molecule to medicine, from concept to capsule”

© 2019, Pituitary World News. All rights reserved.

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