Feb. 18, 2016, PALM SPRINGS, Calif. –- In an example of a successful private-public partnership, the creators of a technologically advanced national registry to collect data on the experience of pain sufferers and their responses to treatment are reporting significant growth across the globe. The results are on view today in a scientific poster at the 32nd Annual Meeting of the American Academy of Pain Medicine (AAPM).
The Stanford-developed and implemented Collaborative Health Outcomes Information Registry (CHOIR) is an open-source web application, created to assess patients and simultaneously to support clinic staff by integrating the pain registry into the clinic workflow. A key component of CHOIR is the National Institutes of Health (NIH)-funded PROMIS system. PROMIS stands for Patient Reported Outcome Measurement Information System, a system of item banks that capture a wide range of physical, psychological and social functioning domains. The ultimate aim is data-based and coordinated care that is available just-in-time to the clinician and that is centered on the patient.
Since the program’s rollout in August 2012, more than 7,500 unique patients have completed surveys, via email or in clinic using iPads, the study authors reported. Furthermore, more than 210,000 NIH PROMIS assessments were captured, including items addressing global health, mood, function, sleep and social functioning. The study’s lead author said that the data collected by CHOIR are particularly powerful in aggregate.
“We have demonstrated the feasibility of using CHOIR to assess specific patient-reported outcome measures while the survey is being completed,” said Ming-Chih Kao, M.D., Ph.D., clinical assistant professor within the Stanford University School of Medicine in Palo Alto, Calif. “This, in particular, has enabled targeted measurement of relevant subsets of patients so that the results are highly relevant and the patient burden remains minimal.”
Furthermore, he added, “In CHOIR we found that large-scale patient-reported outcome capture has revealed patterns and signals that would otherwise be hidden.”
Dr. Kao described the growth of CHOIR sites to include new pain medicine clinics, non-pain specialties and expansion into Canada, Australia and Israel. In addition, “as pain medicine specialists, we have also worked with the AAPM to expand the platform to the perioperative setting, including preoperative clinic and acute pain settings,” he said.
The need to improve patient outcome registries is one of the goals set by the Institute of Medicine (IOM) in its 2011 report Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research. The IOM report documented more than 100 million Americans who suffer chronic pain at costs in medical expenses and lost productivity that reach up to $635 billion a year. Dr. Kao praised the power of the CHOIR open platform in which participants may contribute to and benefit from the sharing of programs, algorithms and data. “Over the past year, our experience in engaging stakeholders at institutions across different nations revealed common unmet needs in 21st century healthcare delivery and research,” he said. “Remarkably, these common needs cut across differences between patient populations, between cultures and between healthcare systems.”