Patient-centered approach to capturing data from cancer patients improves care and research

DURHAM, N.C. – Wireless, personal computers used by cancer patients to log their symptoms help improve the patients’ care and further cancer research, according to a study led by researchers in the Duke Comprehensive Cancer Center.

“We wanted to see if patient-reported data generated at the point of care could be used to build a growing dataset for clinical care and research,” said Amy Abernethy, M.D., an oncologist at Duke University Medical Center and lead investigator on the study. “We found that we could create a rapid learning oncology system in an academic clinic without interrupting patient care. We feel this is really an example of what a patient-centered learning health care system is all about.”

For the study, researchers collected data from 275 breast, lung and gastrointestinal cancer patients. When patients arrived at a clinic for their appointments, they were given a wireless tablet personal computer. The computer guided them through a series of questions about their symptoms and quality of life and immediately generated a report for clinicians to review. In return, patients received educational information about their particular cancer. Meanwhile, aggregate data is used to inform care at the clinic level, and also feeds into a larger data system comparing interventions and care patterns.

The researchers will present their findings at a poster session and oral discussion at the 2009 American Society of Clinical Oncology meeting in Orlando, on Sunday, May 31.

The use of the personal computers to capture patient data was acceptable for patients and clinicians and both groups experienced advantages from the system, Abernethy said. “Patients find it a more pleasant way to report their symptoms, are often more honest with their answers and find it helpful in remembering all of the symptoms they had since their last appointment,” she said.

“The information patients enter creates longitudinal data that clinicians and researchers can use to assess what happens to a group of cancer patients over time. This may lead to improved care for the patient,” Abernethy said.

“For example, among the breast cancer patients we noticed that sexual distress was an underserved concern, and we have initiated intervention studies to address this,” she said.

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