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21st Century National Pain Registry Could Change Culture and Practice of Pain Management

PHOENIX, March 11, 2014 /PRNewswire-USNewswire/ -- Based on early testing, the future looks bright for the creation of a technologically advanced national registry to collect data on the experience of pain sufferers and their responses to treatment, according to Stanford scientists who presented data at the 30th Annual Meeting of the American Academy of Pain Medicine (AAPM).

In a scientific session on Friday, Sean Mackey, MD, PhD, president of AAPM, explained how the Health Electronic Registry of Outcomes (HERO) system is designed to capture detailed, longitudinal patient-reported outcomes on physical, psychological and social health. The HERO system uses sophisticated algorithms to quickly assess a patient's condition and assign values to the individual contributors of pain. The system is designed around the knowledge that many factors contribute to an accurate pain assessment.  Some of those factors include pain intensity, how much pain interferes with activities, physical function, fatigue, sleep, mood and others.  The value to the pain practice and pain patient is dramatic, said Dr. Mackey, who is chief of the Pain Medicine Division at Stanford University School of Medicine in Palo Alto, Calif (http://snapl.stanford.edu.)

"We expect this work will ultimately help clinicians target tailored treatments to a specific patient," Dr. Mackey said.  "And we hope this work will help persons suffering from pain get the right treatment that is safe and effective for them to ultimately improve their quality of life."  

The work on HERO began with both philanthropic funding (Redlich Pain Research Endowment) to Dr. Mackey as well as a grant from the National Institutes for Health (NIH) Pain Consortium to Dr. Mackey and the Stanford Center for Clinical Informatics (SCCI). The goal has been to develop an open source health registry available on a national scale. "This is a perfect example of a public-private partnership that is working," Dr. Mackey said. "We are using both NIH resources as well as our own to develop a flexible system that will be freely available and usable for multiple pain and other medical conditions."  In late 2012, the Stanford Pain Management Center rolled out HERO and now has data on approximately 3,200 unique patients with over 8,000 longitudinal data assessments. Ming-Chih Kao, MD, PhD, assistant professor in the Stanford Pain Medicine Division, demonstrated several examples of how HERO has helped improve the quality of life for patients suffering with chronic pain as well as served as a platform to answer important pain research questions.

The need to improve patient outcome registries is one of the goals set by the Institute of Medicine 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. To address IOM requirements, Dr. Mackey said, HERO is able to:

  • Support assessment of patients and treatment decision making at the point of care
  • Provide for the aggregation of large numbers of patients
  • Enable the assessment of the safety and effectiveness of therapies
  • Create "learning systems" that would provide clinicians with ongoing information about treatment success or failure

The idea is to remove technological barriers to collecting assessment and treatment data locally that can be rapidly aggregated and harmonized nationally, Dr. Mackey explained.

A frequent question that arises is why not use currently existing electronic medical records (EMRs)? The answer, Dr. Mackey said, is that current EMRs are not adequate to the complexity and demands of modern patient-reported outcomes. "Limiting our infrastructure to static or traditional forms would be like building a word processor that uses only the Courier New font," he said.

A key component of HERO is the NIH-funded PROMIS system, which stands for Patient Reported Outcome Measurement Information System. The NIH has invested more $100 million in developing the dynamic system of health-related measures since the project's inception in 2003, said Karon F. Cook, PhD, of the Feinberg School of Medicine, Northwestern University, Chicago, Ill., who also spoke to AAPM attendees.

In addition to Stanford and the NIH, the project's other collaborators include the University of Florida where testing is under way to integrate the new database with the current system of electronic medical records. 

About AAPM
The American Academy of Pain Medicine is the premier medical association for pain physicians and their treatment teams with over 2,500 members. Now in its 31st year of service, the Academy's mission is to optimize the health of patients in pain and eliminate pain as a major public health problem by advancing the practice and specialty of pain medicine through education, training, advocacy and research. Information is available on the Academy's website at www.painmed.org.

SOURCE American Academy of Pain Medicine

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