Emily’s Tips for Cultivating Super-Patients

When it comes to managing life with a chronic illness, taking all your medications and following your treatment regimen isn’t as simple as you might think. In fact, it’s often really hard.

That’s what Emily sought out to remind health care providers and policymakers at a March 11-12 conference, “Promoting Appropriate Medication Use: a Collaborative Strategy,” held by the Agency for Healthcare Research and Quality (AHRQ), a national initiative of the U.S. Department of Health & Human Services.

Drawing on her lifetime experience as a Cystic Fibrosis patient, Emily served on a panel called “Patients as Partners.” She spoke about her evolution into a “super-patient,” the empowered, engaged and hyper-adherent partner in her care that she is today despite her time-consuming medical regimen. You can ready more about her journey here.

Emily said her adult CF medical team’s willingness to listen, high regard for her life goals, and co-development of care plans together as partners served as catalysts for her evolution into an empowered “super-patient.”

She stressed the importance of treating the whole patient, not just a symptom or disease, and brought to life the enormous impact of medications and treatments on patients’ everyday lives.

“When [providers] jot down a new prescription or rattle off a new treatment, it may seem like just another pill, or just another 20-minute nebulizer, but I think what often gets lost is the impact of those additions—the ripples.”

She also highlighted the substantial barriers many patients face in their attempt to follow care plans, including significant time burdens, difficulty obtaining prior authorizations, and difficult decisions about which prescription to take if they can’t afford them all.

Her core message: we have to change the conversation from one about medication adherence and non-adherence to asking the question, how can we create a system that brings out the most empowered, satisfied, healthy and productive “super-patient” in us all?

Emily was one of a handful of patients and caregivers among the 33 speakers, panelists and moderators at the AHRQ conference, convened by the Centers for Education & Research on Therapeutics. Emily participated in a “Patients as Partners” panel moderated by Michael Seid, PhD, Cincinnati Children’s Hospital Medical Center that included: Ian Eslick, PhD, managing partner, Vital Reactor; Erin Moore, CF parent and Cystic Fibrosis Foundation advocacy chair for Ohio; and Roni Zeiger, MD, CEO of Smart Patients.