The sore back. The stiff knee. The aching hand. More than 50 million Americans suffer from these and many other forms of noncancerous chronic pain. Treatments recommended for chronic pain include physical therapy, exercise, cognitive behavioral therapy, meditation, medication, a wide range of alternative therapies and other measures. Often it is not easy to tell how effective a treatment is because most patients do not carefully monitor changes in their pain levels and function over time.
With diabetes, we test patients’ glucose levels, recommend insulin, exercise, diet changes and other evidence-based treatments. But with chronic pain the evidence supporting many therapies is limited or absent and routine monitoring is rarely used, so the condition continues to hit our economy with $100 billion in losses and expenses each year.
Many of my colleagues and I believe that in order to effectively manage pain, we need to know much more about how pain and treatments are woven into our patients’ daily lives. We need to address questions like: How often do symptoms occur? How long do they last? What level of intensity do patients experience? What triggers pain? How well does the pain respond to treatments? How does pain interfere with activities and sleep?
A few years ago, I had the opportunity to take part in Project HealthDesign, a national program of the Robert Wood Johnson Foundation’s Pioneer portfolio. We sought to create new technologies to help patients manage chronic diseases and deal with other health concerns. Our team at the University of Massachusetts Medical School developed a mobile application, which we call an electronic pain and activity diary. This application has the potential to enable patients to use smartphones and PDAs to record information about their daily lives, including how much pain they experience hour by hour throughout the day, how physically active they are, and how they respond to different treatments. We are also working on ways to display the data collected from the diary in ways that will help patients and their providers understand the nature and impact of the pain experience from day to day as well as the individual’s response to treatment over time.
The average user of our mobile application engages with the application for 5-7 days at a time. She uses it periodically to monitor response to new therapies or to document in detail changes in the pain experience, like when she identifies a new pain or perceives a change in an old pain. The application automatically triggers notifications every two hours, which remind the user to record information. We believe our app will help users identify patterns in their short- and long-term pain experiences, like “When I work out more often, I don’t notice as much lower back pain” and “I find certain triggers seem to cause more intense pain.”
We hypothesize that detailed time series analyses of pain, activity and treatment data – when effectively summarized and displayed – will effectively capture a patient’s experience better than diaries that call for one or fewer entries per day. Because it is challenging to patients’ memories and is also time consuming, the complex nature of patients’ pain experiences is rarely explored in this level of detail during visits with their health care providers.
Along with other patient-centered innovations, our pain diary holds promise for changing the way health care is delivered. Technologies like the pain diary promote far more patient engagement than many of our current approaches to chronic disease management, as well as more communication between patients and clinicians in order to develop effective treatment plans.
Rethinking our approach to pain couldn’t have come at a better time as health reform efforts focus our attention on innovative and technologically advanced approaches to more patient-centered, more cost-effective care.
If we are to have a truly integrated health infrastructure in the U.S., clinicians must value patients’ daily experiences and act on the data they collect outside of the clinical setting. This will lead to better clinician and patient decision-making and health care that is more patient-centered. Then – and only then — can we truly begin to “make the pain go away.”
Roger Luckmann is a family physician.
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