“If we have data, let’s look at data. If all we have are opinions, let’s go with mine.” — Jim Barksdale, former Netscape CEO
Sheepishly, I find myself enjoying this quote a little too much. My clinical and research workdays would go by so much more smoothly, for me at least, if folks would just accept what I tell them. After all, they tell me I am an “expert” in the field of pain medicine. Then again, I have enough experience at this point in my career to understand that experts and the opinions they spawn usually are indicative only of a professional who is no longer willing to learn anything new. I think Mark Twain got to the meat of the issue when he said, “It ain’t what you don’t know that gets you into trouble. It’s what you know for sure that just ain’t so.” The sad fact is that many of my so-called expert opinions have had to be adjusted or changed throughout my career due to nasty facts that some miscreant researcher found in the data. While it is true that no human (that I would trust) likes to have their opinions on a subject contradicted by the data, I find it far less stressful to practice medicine that is supported by facts rather than my expert opinions.
I would suggest that the need for quality data to drive medical practice is more important than ever as the complexity and technology that drives modern medical practice seems to be in an exponential growth phase. In my own field of pain medicine, the need for better evidence to drive current clinical practice has been seen as the primary focus of efforts to improve pain care in America. Both the Army Pain Management Task Force — Final Report May 2010 and the Institute of Medicine 2011 report on pain, “Relieving Pain in America: A blueprint for transforming prevention, care, education, and research” noted the lack of data to support the most common pain management procedures and techniques. Furthermore, there is little evidence against many integrative pain-management traditions (acupuncture, yoga, massage) that are often considered outside accepted medical practice. In short, there is a real need within the pain-medicine community for large, patient reported outcome registries to provide the standardized “big data” needed to make value judgments on the therapeutic benefit (or not) of any given pain treatment modality for any given pain condition.
It is for these reasons that I am pleased to report on the initial rollout of the Pain Assessment Screening Tool and Outcomes Registry (PASTOR) in the warrior transition clinic at Walter Reed National Military Medical Center (WRNMMC) in Bethesda, MD, that is directed by Army Col. Wendy Campbell, clinic officer-in-charge, and Army Col. George Kyle, Warrior Transition Brigade surgeon. PASTOR is an electronic pain-data registry and clinical support tool designed to facilitate conversations between patients and providers about pain while providing data needed by clinicians to make individualized pain treatment choices.
Further, it is increasingly recognized that the complexity of pain disease processes requires assessment of the biopsychosocial aspects of pain. Traditionally, obtaining this information required cumbersome and lengthy questionnaires that were typically limited to clinical research protocols. PASTOR leverages the academic power of the National Institutes of Health through the Patient Reported Outcome Measurement Information System (PROMIS – www.nihpromis.org) which represents an investment of $100 million to develop a library of well-validated, patient-reported outcome measures and a system for administering them utilizing computer adaptive tests (CATs).
Basically, CATs greatly reduce the question burden associated with measuring any one clinical domain, thus allowing collection of far more information with less question burden for the patient. Utilizing modern Internet technology, patients are able to complete the PASTOR questions in the privacy of their own home on their chosen Internet device. The information obtained from patients’ responses is stored in the PASTOR registry and presented in a two-page summary for the clinician. The summary report is designed to facilitate meaningful and directed conversation between providers and patients about pain. It also includes pertinent warnings to clinicians when a patient’s responses suggest issues with alcohol, drug use, depression or suicide. In short, the system allows for a more substantial provider and patient interaction concerning pain within the constraints of a typical clinical visit.
The system is being piloted at WRNMMC and soon at Madigan Army Medical Center in Tacoma, WA. Once interoperability with the DoD electronic medical record is worked out, the system will expand to additional sites. Once multiple centers are online, the system will begin collecting standardized pain-related data on literally thousands of pain patients within the DoD. In time, this number will swell to hundreds of thousands, allowing comparisons and population-based pain research heretofore impossible. It is anticipated that PASTOR will provide the evidence required to drive best pain-care practices and pain-resource allocation into the 21st century.
The power of standardized, population based pain registries utilizing the NIH PROMIS engine is not lost on civilian medicine. For example, a similar program was launched from Stanford University by Sean Mackey, MD, PhD. Wider adoption of this approach will enhance the power of the data generated and allow unique comparisons of systems across the nation. Finally, although the PASTOR project is focused on the national health problem that is pain, the PROMIS tools cover a wide range of health-related domains. It is conceivable that any clinic could design PROMIS-based question sets unique to the medical priorities of the clinic in question but still feed information into large registries for comparison and research. There is no reason why similar PROMIS-based systems such as PASTOR could not be developed for diabetes, behavioral health, cardiovascular disease or any national health issue.
I am convinced that projects like PASTOR will soon be a routine part of American medicine. It is exceedingly difficult in this short editorial to describe the many advantages of the PASTOR project for managing pain in the DoD. Further information about the program can be found at www.dvcipm.org/pastor. I applaud everyone — there are many — within the DoD, NIH and VA partnership who has helped make PROMIS a reality. I, for one, am looking forward to the time when I can speak more clearly to my patients about the data supporting my medical practice and rely less on my opinions. PASTOR is bringing that time into the present.