Disease Registries

Patients with chronic diseases, and these patients often have multiple chronic diseases, are said to account for a high percentage of total health care spending.  Multiple organizations have issued at times varying guidelines on the treatment of these patients and numerous care management programs have been tried in an effort to both improve quality and lower costs in regard to the health care these patients receive.  Disease registries are one of the simpler methods for tracking the care of these patients.  Research reported in Health Affairs looks at disease registries in the United States, Australia, Denmark, Sweden and the United Kingdom to see what value they have offered.   (HA Article)

The authors begin by pointing out that while a common view is that disease registries serve primarily as a passive data collection tool to be used for retrospective outcomes research, they actually have excellent potential as a proactive care management tool, particularly when maintained and available in real-time in a provider’s office.   The registries allow comparison of actual treatment with guidelines and for comparative outcome measurement across sub-groups of patients or patients treated by different physicians, but they also can serve as a source of prompts for providers to deliver recommended or missing care, for example ensuring that patients with diabetes get eye and foot exams.  They serve as a cornerstone of sustained quality improvement programs.

The authors then examined 13 registries in five countries and interviewed experts.  While not able to really ascertain cause and effect, several of the registries appear to be associated with great improvement in recommended care guideline adherence and ultimate patient outcomes.  For example, use of cardiovascular registry in Sweden appears to have led to substantially greater delivery of recommended care and significant reductions in mortality.   A hip replacement registry seems to have led to reductions of as much as 8% in spending on the procedures, largely by avoiding early second replacements.  In the much larger US population, such savings could approach billions of dollars a year.  With the emphasis on provider HIT in the United States, registries are a fertile ground to assist with quality improvement as more providers obtain and implement good clinical systems.