Chronic diseases, those diseases lasting 3 months or more that cannot be prevented by vaccines or cured by medication1, are placing an increasing burden on our healthcare system. Unfortunately, the United States has one of the highest rates of illness, disability and death due to chronic diseases, such as asthma, diabetes, coronary heart disease and obesity. According to the Centers for Disease Control and Prevention (CDC), 7 out of 10 deaths among Americans each year are from chronic diseases and as a nation, 75% of our health care dollars goes to treatment of chronic diseases2. In 2005, 133 million Americans, almost 1 out of every 2 adults, had at least one chronic illness1. Regardless of the impact of these preventable diseases, a recent survey found that only 56% of recommended care is being provided for patients with chronic illness3. As a result, provider organizations are seeking new strategies for effectively managing these large and expensive populations4. “There is a great need for a systematic and comprehensive approach to caring for patients with chronic diseases to help improve the quality of chronic care delivery.” 4 One such strategy is implementing disease registries to capture and track key patient information that assists care team members in proactively managing patients with chronic diseases5.
In this blog post, we will take a high-level look at the some of the key functions and limitations of a disease registry as it relates to chronic disease management.
Functions of a Disease Registry
A registry can be defined as “an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individual persons exposed to specific medical intervention who have either a particular disease, a condition (e.g., a risk factor) that predisposes them to the occurrence of a health-related event, or prior exposure to substances (or circumstances) known or suspected to cause adverse health events.” 6
Though many believe that the functions of disease registries are similar to those of electronic medical records (EMRs), the fact is, they serve different purposes:
Table 1: Difference between EMR and Registries7
|Individual patient based||Population based|
|Point of care documentation||Longitudinal data capture|
|Legal patient record||Not a patient record|
|Not designed for reporting and identifying gaps||Designed for reporting and identify gaps|
|Not designed to follow quality||Basic design supports quality initiatives|
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Jane Metzger, in the article “Using Computerized Registries in Chronic Care,” precisely explains “registries differ from EMRs in that they manage only selected information relevant to one or more chronic disease rather than more comprehensive information about patient problems, health history and care. Additionally, disease registries are designed to manage up-to-date lists of chronic disease patients so they can be tracked effectively. EMRs were designed to support providers at the point of care, not necessarily to manage patient lists as needed for the ongoing management of a population of patients.” 8 The article also provides an excellent visual (Table 2) capturing the functions of a disease registry:
Table 2: Basic and Advance Functions of Disease Registries8:
Limitations of Disease Registries:
Though registries seem to be a very viable solution to chronic disease management, R. Christensen from Registrant, notes some important limitations9:
- Inability to perform desired analyses due to limitations of data captured
- Capture of irrelevant data that is not, or cannot be reported
- Analysis of observational data requires experienced biometrics personnel
- Perceived diminished value of research evidence than controlled trials
- Journal reviewers may be less accepting of observational data
- Research naive investigators & sites
- Site may not have a trained Study Coordinator
- Enrolling & training large numbers of sites
- Capture & cleaning of large volumes of data
- Site & patient retention
- Determining the appropriate balance of on-site/escalate monitoring vs. remote site management
- Under-reported & hidden SAEs
Chronic diseases are among the most common, costly, and preventable of all health problems in the U.S2. The use of disease registries can play a large role in effectively managing these diseases. Despite some of its limitations, disease registries can provide useful knowledge on specific patient populations, allowing for more proactive, coordinated and focused care and education, ultimately resulting in improved outcomes and decreased cost.
What do you think? Do you believe disease registries can improve the management of chronic disease?
Resources for this blog post: