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Helping Patients Test Treatments for Chronic Illness

Customizable tools will let patients, and their doctors, track various health metrics.
July 12, 2011

A new set of tools could help patients with chronic illnesses track their condition and monitor  how they respond to different treatments.

The tools are designed to let physicians run experiments tailored to an individual patient’s needs, a faster and more quantitative way than infrequent office visits to determine a treatment’s benefits or side effects.

“The idea is to try to make interactions between patients and doctors more continuous, and to provide patients with more information so they can participate more actively in their care,” says Peter Margolis, a physician at Cincinnati Children’s Hospital. The project is part of the Collaborative Chronic Care Network (C3N), whose goal is to collect real-time data and use it to change how chronic illnesses are managed.

Those involved with the project would like to see health care focused more on the variability of day-to-day life, and less on sporadic visits to the doctor’s office.

Today, most patients with chronic conditions see their physicians a few times a year. The doctor prescribes a new treatment, and the patient reports back weeks or months later. Margolis and his collaborators have created a suite of tools, including automated text messages, smart phone apps, and online surveys, to help patients track their symptoms more rigorously.  Because the tools are designed to generate quantitative data, “we can set up a self-experiment and see if treatments work,” says Margolis.

The project is part of a larger trend of people using new technology to monitor their health. While much of this tracking occurs outside of the traditional health-care system (see The Measured Life), Margolis would like to create a platform that brings both doctors and patients into the process.

“The theory is that if we had more rigorous information on patient outcomes, we would be able to adjust therapies in a more scientifically rigorous way,” says Richard Kravitz, a physician and health policy researcher at the University of California, Davis, who is not involved in the Cincinnati effort.

Margolis’s project will initially focus on children and teens with Crohn’s disease, a painful intestinal disorder, and other inflammatory bowel diseases. It is still in the early design phase; researchers are testing the system on a handful of patients with the goal of deploying it through the 300 physicians of C3N. Part of the early work involves determining what kinds of questions patients ask and the best ways for them to collect information. The tools are designed to be flexible, Margolis says, and therefore they should be applicable to other conditions as well.

One of the first patients enrolled in the study is a young runner with Crohn’s disease. “He wants to find the right combination of medication, lifestyle, and diet that will enable him to perform at the same level on his cross-country team as he did before he got sick,” says Margolis. Regular text messages ask him to report whether he has run that day and at what pace. Over time, that data, along with information on the medication he is taking, should reveal whether the drugs he’s taking help or hurt his running stamina. “He still thinks his stamina is not where it was before, but right now we can’t tell if it’s his disease or not being able to train,” says Margolis.

A more advanced program for children with attention deficit hyperactivity disorder (ADHD) has already shown some success. Jeff Epstein, a pediatrician at Cincinnati Children’s, has developed Web-based software that distributes questionnaires to parents and teachers and analyzes the results. Doctors prescribing stimulant medication to children with ADHD are supposed to objectively monitor the effects of the medication to see if it’s adequately controlling symptoms, or if children are experiencing side effects such as a lack of appetite or trouble sleeping. But they almost never do this, says Epstein. The questionnaires cover the child’s mental status, physical symptoms, quality of relationships, and success in school.

Epstein says parents and teachers seem to like the tool. An ongoing study is examining whether it improves children’s outcomes as well.

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