Better Understanding the Patient and Caregiver Perspective with Effie Parks

At the HLTH conference last year, one of the most amazing people I met was a lady named Effie Parks.  She was attending HLTH to receive a WEGO Health Award for her work on the Once Upon a Gene podcast.  I learned so much from her and was so touched by her story that I knew I had to have her on the Healthcare IT Today Interviews podcast.   What makes Effie Parks special is that she’s an incredible human.  What makes her healthcare story interesting is that she was a new parent of a child with a rare genetic syndrome.  She felt lost and without a guide until she found a podcast that talked about other rare diseases.  Those stories gave her strength and the feeling that she wasn’t alone.  She started the Once Upon a Gene podcast to share more of the rare disease stories she finds and to share her experience navigating the healthcare system as a caregiver of a child with a rare disease.   Be sure to subscribe to Effie’s Once Upon a Gene podcast: https://effieparks.com/podcast  Find more great health IT content: https://www.healthcareittoday.com/