For Nikki Abramson, who has dealt with a complex health condition for nearly her entire life, having access to her health records to manage her care isn’t just a convenience—it’s a necessity.
Nikki is an accomplished author and educator with a passion for theater and the arts. She puts her talents to work at Upstream Arts in Minnesota’s Twin Cities, where she teaches acting to individuals with disabilities. In addition to juggling projects on her packed professional calendar, Nikki deals with the effects of mitochondrial myopathy, a rare condition that weakens her muscles.
“Since I was diagnosed when I was five, I’ve had to find ways to conserve energy, like wearing strong glasses and sometimes using a wheelchair,” Nikki explained. “I see lots of different specialists to help me manage the effects related to my condition, like asthma and scoliosis.”
The specialists who care for Nikki are spread across different Minnesota health systems. They’re able to coordinate and share information about her treatments using Care Everywhere.
“It’s been super helpful to have every provider I see know what’s going on with my care,” Nikki said. “Where one person leaves off, the next can pick up, because I have one record across the different health systems.”
Nikki recently had a related health scare when the abdominal pain she’d been experiencing for months was diagnosed as a gastrointestinal stromal tumor, an uncommon type of cancer. Specialists from around the country reviewed her unique case, using Care Everywhere to view her health information. Her treatments, surgery, and rehab have required multiple hospital stays and ongoing therapy, so she uses MyChart to manage her extensive recovery.
“MyChart is a huge gift,” Nikki said. “I go on MyChart every day to look up appointments, check in, ask my doctors questions and update them on my progress, refill my prescriptions, and verify my medication list.”
Nikki is looking forward to when all of her providers enable Happy Together for MyChart so she can combine her accounts.
“I believe that there’s still room for improvement when it comes to designing patient-focused technology,” Nikki said. “I encourage you all at Epic to continue to design features with patients like me in mind.”
Learn more about Abramson’s work and her experiences as a patient on her website.
