Both the clinician and the patient hold an important piece to the care puzzle, according to Kristina Sheridan, head of the enterprise strategy and transformation department at the nonprofit MITRE Corporation. 

The physician has expertise in treating illness, whereas the patient is the authority on living with the condition, she explained at the Society for Participatory Medicine in Boston this morning. But transferring the patient’s life experience into a useable dataset can pose challenges. 

“We hear about patient-generated data all the time,” Sheridan said. “But when you hear about the context of that data, most of the time right now it is around wearable devices and monitoring devices. … People aren’t talking about the other type of patient-generated data, what we call active patient generated data — the patient voice.”

Sheridan knows about the patient perspective from her own life experiences caring for her two children, both of whom contracted Lyme disease when they were in grammar school. This condition led to major complications for her daughter.

The symptoms of her condition became so overwhelming that her daughter started to think of them as the new normal and stopped mentioning them to doctors. That was when Sheridan put together an Excel spreadsheet to help keep track of her daughter’s symptoms. 

“I finally had something to back up that gut feeling that something was off. When progress was slow and my treatment was plateauing, the data helped encourage me that things were still getting better,” Kate Sheridan, Kristina’s daughter who videoed into the session remotely, said. “But when things declined it was still beneficial to see. Sometimes between my myriad of symptoms it could be hard for me to identify and communicate exactly what was getting worse. Small changes in my condition could mean an infection or a bad reaction to meds and catching those symptoms prevented a trip to the emergency room. The data helped legitimize what I was feeling and gave me confidence in evaluating and communicating my own state of health. Data has power.”

This experience prompted Sheridan, a trained engineer in astronautics and space, to change careers. She now works with the research nonprofit MITRE to develop a digital Patient Toolkit, which lets patients digitally record symptoms, treatments and medications. It also lets patients communicate with their providers. 

While she was inspired to get involved with patient data because of her personal journey, the Patient Toolkit comes from a slew of additional research. MITRE worked with the University of Virginia to listen to what patients wanted from a tool like this. The team found patients were mostly managing their own condition without digital tools, that patients wanted to be heard by providers and felt positively towards e-health tools. 

The team also worked with Carnegie Mellon to listen to what providers wanted from patient generated data. The answer was longitudinal severity and compliance data. 

Sheridan pointed out that most of the patient experience happens away from provider’s office. The toolkit was developed to remedy this gap. 

“I don’t know any other experts who have no tool to support them in the 99 percent of time they are applying their expertise,” Sheridan said. “Patients are at home managing their own chronic condition the majority of the time, and they are in the clinic for [a small] amount of time.”

The toolkit was designed to help facilitate that patient input and let patients see their symptoms over the course of time.  

“The best care is when patients are included and acting together,” Sheridan said.