Project HealthDesign Featured in Wall Street Journal

Aug 17, 2010, 12:45 PM, Posted by RWJF Blog Team

Today’s Wall Street Journal has an excellent article and blog post on Pioneer national program Project HealthDesign (PHD), written by Informed Patient columnist Laura Landro. Both pieces focus on how Observations of Daily Living (ODLs) can improve care, going into detail about some of the innovative ways PHD grantees are enabling both patients and their doctors to track – and learn from – these observations.

Do you think monitoring ODLs can dramatically improve the quality of your health? What specific kind of ODLs would you most likely track on a day-today basis? Read Laura’s article below and let us know your thoughts.

How Life's Details Help Patients

Personal Observations Provide Doctors With New Information to Aid in Treatments

By Laura Landro

The Wall Street Journal

Suffering from Crohn's disease, an inflammatory digestive disorder, Nikolai Kirienko has to watch for complications, such as life-threatening internal bleeding in his intestinal tract.

Now, the University of California at Berkeley undergraduate is working with researchers there on a project called Crohnology.MD. The project will let Crohn's patients with a smartphone track daily digestive symptoms and sleep patterns along with signs of anemia, depression and weight loss that could signal a worsening of the condition, which affects 600,000 Americans. Known as "observations of daily living," the data will be charted, along with lab results and other measures, to create visual trend lines on a website—and viewed by patient and doctor.

Thanks to smartphones and wireless monitoring devices, experts say, it is getting much easier to capture such data and summarize it in easy-to-read graphics and charts for patients and physicians.

The Crohnology.MD effort is part of Project HealthDesign, a program funded by the Robert Wood Johnson Foundation in Princeton, N.J., to see how soliciting information from patients' daily lives could improve care for chronic illness and other health conditions. "It's the day-to-day experience that shapes a lot of your health, but doctors don't have that information in the medical record," says Stephen Downs, assistant vice president of Robert Wood Johnson's Health Group.

Other academic medical centers in the project are testing the use of smartphones to track symptoms, medication use, and physical activity for patients with asthma, and creating mobile devices for parents to track the progress of pre-term low-weight babies. At San Francisco State University, researchers are providing smartphones to overweight teens to help them monitor physical activity, food intake, and mood changes, to see if it can help them overcome obesity and the depression that often accompanies it.

Several Web-based programs such as theCarrot.com and Keas.com allow consumers to input medical information and track their conditions using mobile devices, as well as create summaries or charts to bring or email to doctors. A number of websites allow patients to keep their own health records. But the sites are primarily for patient use, so unless they share that information with doctors, it isn't of much use for treatment plans

Project Health Design's teams are integrating data collected by patients into personal health records so doctors can see patterns that might alert them to a health problem.

"We don't want to track every missed footfall, but we are making it possible for patients to record what they felt was important, and what they wanted the doctor to know," says Patti Brennan, a professor at the University of Wisconsin-Madison School of Nursing and national program director of Project HealthDesign.

Reviewing reams of daily-life data gathered by patients could be overwhelming for doctors. But researchers in the program are using a number of Web-based applications to summarize data in charts, trend lines, and other visual aids.

Mr. Kirienko came up with the idea for Crohnology.MD after keeping his own electronic journal through six surgeries in different hospitals over the years. The 30-year-old says his observations allowed him to avert disaster on several occasions. Once, as he was being rolled into the operating room, he noticed swelling in his fingers that he recognized as a sign of a blood clot, of which Crohn's patients have a higher risk. He had suffered two clots in the past and recorded the symptoms in his journal, which he says "gave me the confidence" to insist on delaying the surgery.

But Mr. Kirienko was less vigilant after starting an experimental therapy using parasites known as hookworms to suppress the inflammatory response in his intestines. He says he was too busy with finals to notice a dramatic weight loss and symptoms of anemia. Rather than put his disease into remission, as hoped, the hookworms invaded his digestive system, drawing more blood than expected and causing the anemia. Mr. Kirienko says had he tracked his symptoms daily in an online timeline like those created with Crohnology.MD, he and his doctor might have seen the connection to the treatment and taken action sooner. (The hookworms were eventually killed with antibiotics.)

Patients may feel gathering all that data is too difficult and intrusive, as researchers in a 2006 to 2008 Project HealthDesign program at the University of Washington learned. Early in the project, they asked diabetics to take cellphone pictures of what they ate and email them to their doctors. Principal investigator James Ralston says patients found it cumbersome, but they were willing to monitor their blood sugar levels after food and send the data to doctors. After patients uploaded the data via phone, it was incorporated into health records so they could track it online and review it with doctors.

"Our goal is to allow patients to understand the patterns of their disease so they can manage it on their own with confidence," says Dr. Ralston, a researcher at Group Health Cooperative in Seattle.

At the University of Massachusetts Medical Center, Project HealthDesign researchers worked with chronic pain patients to design a hand-held electronic pain diary that was easy to use. The researchers found it was easier to recall pain intensity in the short term than on a daily basis, so they asked patients to enter their observations at two-hour intervals on the device using a touch screen. Roger Luckmann, the physician who led the project, says the idea is to have patients use it over a three-to-four-day period.

 "To take care of someone with pain, a doctor really needs to know what the experience is like over several days, and to know things like how pain interferes with sleep," says Dr. Luckmann, who is working with a developer on a commercial version.

 Patients who are reluctant to share information or admit to doctors face to face that they didn't follow their regimen may feel more comfortable entering the data into a device. Katherine Kim, principal investigator for the project for obese teens at San Francisco State, says providing the popular iPod Touch to let them monitor physical activity, food intake and mood may allow the teens to share the requested data more easily—and at the right times—with their care team at San Francisco General Hospital's teen clinic. "Nurses have told us that patients text them all the time and are more comfortable and honest in a text message because they aren't face to face," says Ms. Kim.

This commentary originally appeared on the RWJF Pioneering Ideas blog.