Better Tools to Manage Chronic Illness Can Improve Patient Outcomes

April 2014
Topics: Information Privacy, Human Computer Interaction
MITRE has created the Patient Toolkit to help people with chronic illnesses better track changes in their health, communicate with their providers, and increase treatment compliance rates.
Doctor and patient.

Roughly four out of five U.S. healthcare dollars are spent on behalf of people with chronic conditions. Chronic conditions present many challenges in both their management and treatment. For example, patients struggle to communicate their symptoms while their caregivers struggle to evaluate them.

Providers and patients often must make critical decisions based on limited, incomplete patient-provided data—data pulled from memory and hand-written notes. Treatment plans must be comprehensive enough to be effective yet uncomplicated enough to ensure compliance. In addition, treatment plans must be coordinated among multiple providers—which requires efficient ways to share information. The intertwined processes involved in communication, collaboration, and coordination can undermine the daily processes necessary to control chronic conditions.

A Personal Approach

MITRE researcher and engineer Kristina Sheridan understands the problem too well. Her daughter was so ill she couldn't go to school. Over three years, the little girl was referred to 30 different doctors, had five hospitalizations, received 15 diagnoses, and was prescribed multiple treatments and medications. Sheridan created an Excel spreadsheet just to track her daughter's symptoms.

"I really didn't know what it was like to manage a chronic illness until my daughter got sick," she says. "There are all kinds of records to keep track of—hospital visits, medical tests, bills, home treatments, research, medical devices, and medications. And that's in addition to keeping up with your regular life. If I were a patient, I would never be able to pull this together."

At one point, Sheridan was getting ready to take her daughter to a new specialist. She wondered how she could share stacks of data with this doctor so he'd be able to quickly understand the patient's entire history. "I created an 11x17 graph that depicted my daughter's diagnoses over time and how her symptoms had fluctuated in relation to various treatments and prescriptions. That was the beginning of her turnaround in the battle against Lyme Disease."

This experience explains why Sheridan is so committed to creating simple-to-use, reliable tools that will help patients communicate effectively with their providers and caregivers, better comply with their treatment plans, and coordinate information more seamlessly among providers.

"My team began searching for technology that would make patients more active contributors within their healthcare teams," she explains. The group researched factors that prevent patients from fully engaging with their providers, investigated current health IT software, and wrote the requirements for a mobile app to fill in the gaps. They wanted to create a tool that a patient would readily use all day long. The tool takes advantage of mobile technology and provides meaningful ways to visualize and understand data.

One result of this work is the Patient Toolkit, which demonstrates how technology can be used to help chronically ill patients track their health data and activities, including symptoms and medication usage, and easily share that information with caregivers and providers. The research also provides recommendations on how these toolkit functions can be integrated into existing healthcare technology to enable caregivers, home nurses, or doctor's offices to collect this missing patient-generated data.

Example of a how the toolkit helps patients track their symptoms each day.

Testing the Toolkit with Patients

Sheridan and her team are completing a prototype of the toolkit. They're partnering with the University of Virginia's engineering and medical center on a clinical study to assess the reliability of gathering patient-generated symptom data and evaluate how this data can be used in the clinical setting.

In collaboration with Carnegie Melon University, the team will study the types of health and lifestyle data available on social media that might work with the toolkit. The team members will interview physicians to learn what health and lifestyle data would be most useful from a clinician's perspective. The team plans to evaluate the impact the healthAction Patient Toolkit might have on the personal and financial burdens of chronically ill patients.

A Better Outcome for Chronically Ill Patients

"We believe that by giving patients, caregivers, and providers a more complete set of information, they will be better able to make decisions about treatments," Sheridan says. "And if we can improve patient outcomes, we can help reduce costs throughout the healthcare system in the treatment of chronically ill patients."

Her goal is to finalize development of the healthAction Patient Toolkit prototype and transfer the technology to the government and other healthcare stakeholders who can bring put it in the hands of patients and their providers.

For more information, please see the video here.

—by Beverly Wood and Russ Woolard





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