Patient advocate: How patients want to navigate chronic health issues

When Kate Sheridan was 11 years old, a series of complications from Lyme Disease changed her life dramatically.

“I went from a straight A student to not being able to read and write, a competitive athlete to wheelchair-bound, and developed an intense pain disorder,” she said. “We very suddenly had a lot to manage — medication schedules, dozens of doctor appointments and conflicting diagnoses, school accommodations, medical equipment — all of it was important, and all of it was overwhelming. We hit a low point where we had no way of controlling or even keeping up with what was happening; the whole situation seemed hopeless.”

Kate’s mother Kristina is a department head and researcher at the MITRE Corporation.

“As Kate's Mom and caregiver, I manage her care, advocate on Kate's behalf, coordinate between each of her doctors, and lay out the method we developed to communicate effectively and consistently with her medical team,” Kristina Sheridan said. “Kate's younger brother Ben was also sick at the same time, so we made sure the system we set up worked for them both. This experience made me realize how hard it is to manage complex, chronic conditions, and how little support or tools exist for chronic patients and their caregivers.”

Kate is now in remission and about to graduate from George Mason University, with a degree in health administration and policy.

Kate and Kristina have several suggestions for how to make healthcare work better for patients with chronic conditions. For one, Kate said, the industry needs to recognize that being a patient or a caregiver is hard work — and no one is born knowing how to do it.

“I compare learning the process of managing your data and engaging in bi-directional communication as similar to learning a new language,” Kate said. “We would never expect someone to be able to learn how to speak French immediately with no background and while under intense stress. It takes technology, education, and practice. We need better tools to make the language of data and empowerment accessible to all — this is where health IT has the opportunity to make a real difference.”

Kristina said another thing the industry can do is invest as many resources in care outside the clinical setting as inside it.

“Patients spend the majority of their time outside the clinical setting managing their illness by themselves, and yet we invest the vast majority of health IT funds in tools for the clinical environment,” Kristina added. “To truly empower patients, we need to invest in tools that will ease the burden of their illness on a daily basis and help them capture their input in real time, as they think of it, rather than expecting them to remember a month of changes during their appointments.”

But most importantly, if institutions want to improve the patient experience, it starts with listening to patients.

“We often think of patients as recipients of care, as people to take care of,” Kristina noted. “We forget that they are experts in how they feel, how their illness impacts their lives, and why they are unable to follow a certain treatment plan. Include these experts as consultants when designing a system or process. Ensure the inclusion of a diverse set of patients so the solutions are comprehensive and inclusive.”

At HIMSS18, Kate and Kristina Sheridan will share their story of how they overcame those difficulties and what lessons that story has for those working in healthcare. In addition to their personal experience, the Sheridans will also share results from a number of surveys and studies Kristina has embarked on at MITRE, inspired by their experiences.

Kristina and Kate Sheridan will be speaking in the session, “Democratizing Patient Data: A Story of Patient Empowerment,” at 1 p.m. March 8 in the Venetian, Palazzo K.