Computerized Disease Registries

Areas of Current Investigation |  AHRQ-Funded Projects  |  Selected Disease Registry Resources |  Background | 

Areas of Current Investigation

Computerized Disease Registries and Health Information Exchange

A promising area for further development and implementation of computerized disease registries is in the context of health information exchange (HIE). While still in a nascent phase, organizations involved in HIE are becoming involved in providing disease and chronic care management services. In such cases, the use of a computerized disease registry offers the ability to effectively identify and manage patients with a particular condition across a region.

Regional health information organizations (RHIOs) and other groups that facilitate HIE often have the necessary administrative and technical infrastructure to implement a computerized disease registry. Their systems can usually allow for data extraction from multiple sources, transformation of the data into a common format, and loading of the data into the registry. In general, they also have the expertise to support interfacing from different providers' health IT systems.

By having the computerized disease registry at an HIE organization, participating providers can obtain clinical data from across the community. The registry allows providers to identify patients as having a particular condition based on tests performed by other clinicians that otherwise would be inaccessible. Thus, the registry enhances care coordination among providers electronically. Furthermore, alerts can be triggered so important disease markers, such as hemoglobin A1C for diabetic patients, can be routinely tested and monitored, even if the patient has not been seen by their primary provider. Registry data also can be used by providers to demonstrate provision of appropriate care to their patients for quality reporting purposes. 

While only a few RHIOs and other HIE organizations currently have computerized disease registries, their use has the potential for supporting population health-based care across various providers locally and/or regionally. Future development will need to focus on technical issues and possibly the establishment of standards related to patient identity management, record localization, and the automation of data loading. Also, current registries have limited real-time data feeding capabilities, thus the timeliness of the data can be affected by the frequency of batch loading. In addition, further consideration should be given to integrating the use of registries into clinicians' workflows at the point-of-care. Nonetheless, the implementation of computerized disease registries by HIE organizations poses an opportunity to better manage chronic diseases in a larger population.

AHRQ-Funded Projects

The Agency for Healthcare Research Quality has had a significant investment in projects that are evaluating the impact of computerized disease registries. A few of the projects implementing these registries are listed below:

1. Santa Cruz County Diabetes Registry: Expands an established Web-based, interactive Diabetes Mellitus Registry that provides patient histories and needed tests at the point of care among public, private, and not-for-profit health care providers. It also tracks the diabetes population to identify trends in key indicators of care.
2. Rural Virginia eHealth Collaborative: Examines automation of the continuity of care record for use in patient referrals, hospital admission, and hospital discharge; e-prescribing in physician practices, hospital discharge medications, and long-term care facilities with links to community pharmacies; and disease registries for managing preventive care interventions and chronic diseases.
3. Evaluation of a Computerized Clinical Decision Support System and EHR-Linked Registry to Improve Management of Hypertension in Community Based Health Centers: Creates a computerized disease registry and seeks to address the need for more empirical outcome data on effective information technology strategies for improving control of hypertension among low-income immigrant populations.
4. Feedback of Treatment Intensification Data to Reduce Cardiovascular Disease Risk: Utilizing the PHASE registry to assess whether the use of systematic feedback on need for treatment intensification in patients with poor control of CVD risk factors improves risk factor control.
5. Colorado Associated Community Health Information Exchange (CACHIE): Uses computerized disease registries as data sources in its interoperable quality information system developed for a collaborative network of community health centers that permits real-time and synchronous quality reporting to inform patient care and quality interventions.
6. Using Precision Performance Measurement to Conduct Focused Quality Improvement: Creating systems, including developing codes to update disease registries, that improve quality data and seamlessly link this data to practice-level quality improvement programs and point of care interventions.

Selected Disease Registry Resources

The following resources were selected from the published literature which describe best practices for the implementation and use of computerized disease registries.

Information Technology to Support Improved Care For Chronic Illness
Author(s): Young AS, Chaney E, Shoai R, et al.
Source: J Gen Intern Med. 2007 Dec;22 Suppl 3:425-30.
Summary:  BACKGROUND: In populations with chronic illness, outcomes improve with the use of care models that integrate clinical information, evidence-based treatments, and proactive management of care. Health information technology is believed to be critical for efficient implementation of these chronic care models. Health care organizations have implemented information technologies, such as electronic medical records, to varying degrees. However, considerable uncertainty remains regarding the relative impact of specific informatics technologies on chronic illness care. OBJECTIVE: To summarize knowledge and increase expert consensus regarding informatics components that support improvement in chronic illness care. DESIGN: A systematic review of the literature was performed. "Use case" models were then developed, based on the literature review, and guidance from clinicians and national quality improvement projects. A national expert panel process was conducted to increase consensus regarding informationsystem components that can be used to improve chronic illness care. RESULTS: The expert panel agreed that informatics should be patient-centered, focused on improving outcomes, and provide support for illness self-management. They concurred that outcomes should be routinely assessed, provided to clinicians during the clinical encounter, and used for population-based care management. It was recommended that interactive, sequential, disorder-specific treatment pathways be implemented to quickly provide clinicians with patient clinical status, treatment history, and decision support. CONCLUSIONS: Specific informatics strategies have the potential to improve care for chronic illness. Software to implement these strategies should be developed, and rigorously evaluated within the context of organizational efforts to improve care.

Using a Simple Patient Registry to Improve Your Chronic Disease Care
Author(s): Ortiz DD
Source: Family Practice Management
Year: 2006
Summary: This short primer provides a brief background on chronic disease management and how you can utilize readily available electronic tools to create a simple patient registry to improve chronic disease care in your practice.

Creating and Validating a Pneumococcal Vaccination Registry
Author(s): Dexheimer JW, Gregg W, Talbot TR, et al.
Source: AMIA Annu Symp Proc. 2005:201-5.
Summary: Healthy People 2010 set a goal of 90 percent vaccination rate for pneumococcal vaccine in elderly patients. We developed a keyword search, using pharmacy orders for Pneumovax as a gold standard, to determine patient eligibility for a computerized pneumococcal vaccination registry. The keyword search captured 98 percent of vaccinations in the validation dataset. A total of 4,768 patients matched at least one keyword in the search and were added to the immunization registry. Through our search, we found a 63 percent vaccination rate in the primary care patient population older than 65, leaving 37 percent of the high-risk population still needing vaccinations.

BRIEF REPORT: The Prevalence and Use of Chronic Disease Registries in Physician Organizations: A National Survey
Author(s): Schmittdiel J, Bodenheimer T, Solomon NA, et al.
Source: J Gen Intern Med. 2005 September; 20(9): 855-858.
Summary: OBJECTIVE: Disease registries are lists of patients with a particular chronic illness, including clinical information, to improve the care of individuals and populations. The objective of this study was to determine the prevalence of disease registries in physician organizations and the extent to which they are used to improve care. Design: A cross-sectional national telephone survey with a response rate of 70 percent. SETTING: All physician organizations in the United States with 20 physicians or more. PARTICIPANTS: Chief executive officers, presidents, or medical directors of 1040 physician organizations. INTERVENTIONS: None. Measurements and Main Results: Forty-seven percent of organizations reported having a registry for at least one chronic illness, with diabetes registries being the most common. Half (51 percent) of the registries were not linked to clinical data. Organizations with at least one registry were more likely to have implemented other chronic care improvements (P<.0001). Factors associated with the presence of registries in physician organizations include external incentives for quality and extent of information technology capabilities. CONCLUSIONS: Disease registries are not utilized by half of physician organizations. This finding is disturbing because registries have the potential to catalyze needed improvement in chronic care management.

A randomized trial of three diabetes registry implementation strategies in a community internal medicine practice
Author(s): Stroebel RJ, Scheitel SM, Fitz JS, et al.
Source: Jt Comm J Qual Improv. 2002 Aug;28(8):441-50.
Summary: BACKGROUND: Disease registries are powerful tools with the potential to transform the way chronic diseases are managed. To date, however, little work has been done to determine how to optimize the implementation of a chronic disease registry in practice. METHODS: Twenty-nine physicians and their nurse teams in a large community internal medicine practice participated in this 6-month prospective randomized trial in 2000. Teams were assigned to one of three implementation strategies using information from a diabetes registry. Process and outcome measures for diabetes management were analyzed. Process measures included the percentage of patients completing glycosylated hemoglobin (Hgb) testing within 6 months and low-density lipoprotein (LDL) testing within 12 months. Outcome measures included the percentage of patients with a glycosylated Hgb > 9.3 percent (equivalent to a HgbA1c > 8.0 percent), the percentage of patients with an LDL cholesterol > 130 mg/dl, and the percentage of patients with controlled blood pressure, defined as < 130/85 millimeters of mercury. Mean change in LDL and glycosylated Hgb values was also measured. RESULTS: Teams randomized to an intervention strategy that included direct letters to patients showed significant improvement across a number of measures. The improvement was most apparent among patients without recent testing or with poorly controlled disease. The two interventions that did not include direct patient letters resulted in limited improvement. DISCUSSION: Disease registries can be used to improve outcomes in the management of diabetes and other chronic diseases. Better outcomes were seen in patients who received letters based on registry-generated data. This strategy should be included as part of a comprehensive chronic disease management plan. Further refinements in the use of registries should result in further incremental improvement.

Building a Computerized Disease Registry for Chronic Illness Management of Diabetes
Author(s):  Hummel J
Source: Clin Diab. 2000;18(3).
Summary: Changes in lifestyle and food consumption are fueling a dramatic increase in type 2 diabetes in children and adolescents. To combat the increasing prevalence of obesity that underlies this trend, health care providers must recognize risk factors in their pediatric patients so that aggressive intervention can be offered. Development of strategies to curb obesity and prevent type 2 diabetes require a team effort by parents, health providers, school personnel, and motivated patients.

Innovations in Using Health IT for Chronic Disease Management: Findings from the AHRQ Health IT Portfolio (PDF, 116 KB) 
Author(s): Dixon BE, Samarth A
Year: 2009
Source: AHRQ National Resource Center for Health IT
Summary: This report summarizes and highlights lessons from the AHRQ health IT portfolio from those projects targetting chronic illness. The report features lessons around quality and cost of care as well as implementation challenges.

Tools for Clinics: Four Health Centers Use Chronic Disease Management Systems
Source: California HealthCare Foundation
Year: 2008
Summary: In this issue brief, four California clinics describe their experiences setting up and using chronic disease management systems (CDMS), which can track thousands of patients at a time.

Registries for Evaluating Patient Outcomes: A User's Guide
Source: Gliklich RE, Dreyer NA, eds. Outcome DEcIDE Center, Agency for Healthcare Research and Quality (AHRQ)
Year: 2007
Summary: The purpose of this document is to serve as a guide to the design, implementation, analysis, interpretation, and evaluation of the quality of a registry for understanding patient outcomes. Although registries can serve many purposes, this handbook focuses on registries that are created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.

The Value of Information Technology-Enabled Diabetes Management
Source: Center for IT Leadership (CITL)
Year: 2007
Summary: Focuses on the use of information technology for the development of diabetes registries. It presents a cost and benefits model that illustrates how the use of IT and disease registry technologies can save lives, decrease cost, and improve patient care.

IT Tools for Chronic Disease Management: How Do They Measure Up?
Source: California HealthCare Foundation
Year: 2006
Summary: This report compares and contrasts chronic disease management systems (CDMS) with electronic medical record (EHR) systems.

Using Computerized Registries in Chronic Disease Care
Source: California Healthcare Foundation
Year: 2004
Summary: The report provides an overview of the functions of computerized disease registries and outlines issues for consideration in obtaining registry software and integrating registry products into the routine work of the physician practice. This information is intended to help physicians, clinics, and medical groups conduct their own assessments of registry tools.

Background

A disease registry is a tool for tracking the clinical care and outcomes of a defined patient population. Most disease registries are used to support care management for groups of patients with one or more chronic diseases, such as diabetes, coronary artery disease, or asthma. Paper-based registries have long been used in the care of patients with chronic diseases; however, computerized registries provide users with an automated way to store data and to create, sort, and display lists of patients and other data for use in planning, quality improvement, reporting, and direct care delivery.

Computerized disease registry functionality is included or available as an add-on to many electronic health record (EHR) products. In addition, stand-alone options can be implemented and are usually less complex and thus simpler to setup then EHRs. Based on their priorities, some organizations may choose to implement computerized disease registries as an interim step prior to implementation of a more comprehensive EHR system. Disease registries can also provide more flexibility for reporting and aggregating data from multiple data sources. When implementing a computerized disease registry, an organization will need to analyze and adjust practice workflows to support new data collection requirements and to integrate the new information from their registry into decisionmaking and planning.

The basic architecture of computerized disease registries consists of three components:

1. A database (server, database management system software, and management tools) to store patient information. 
2. A data model to organize and integrate information in the registry. 
3. Software tools that allow users to sort, manipulate, and create views and reports from the information in the registry. 

Organizations can procure each of these components individually to build their own solution or purchase them as packages from vendors.

Another architectural choice involves where the registry is hosted. The registry can reside either: (1) locally (on a network server or PC within the provider organization) or (2) at an external location hosted by a vendor or another sponsor (i.e., Application Service Provider or ASP model). While local hosting provides more direct control of the data and the solution, external hosting (coupled with service-level agreements) can shift the burden of maintaining, upgrading, and supporting the registry from the provider.

Organizations interested in a registry also should consider how data will be populated. There are three main ways to populate the registry with data:

1. Manually entering data by typing into defined fields in the system. 
2. Importing data using standards-based message formats (often HL7 or CCD) that the software can parse and automatically populate the fields. 
3. Combining these two approaches. While populating a registry "integrated" with an EHR system is often far from a seamless process, the main disadvantage of a stand-alone registry is the requirement for manual data entry or the need to set-up interfaces for data population from one or more separate, electronic sources.

Data included in the registry can be important in assisting clinicians with appropriate preventive maintenance and disease management. For example, if the clinician is monitoring the care and health of his/her diabetic patients, the registry could include data such as the date of the patient's last hemoglobin A1C tests and the results as well as other clinical information, including additional diagnostic testing results, medication lists, and the history of compliance with recommended guidelines. Some registries with more advanced features may include clinical decision support functionality that can prompt users with care recommendations.

Computerized disease registries allow providers to:

1. Create patient reports to be used at the point-of-care. 
2. Generate exception reports to identify patients who are not meeting management goals. 
3. Develop progress reports to examine provider and staff performance in delivering recommended care. 
4. Produce population reports to monitor and stratify patients. 

In addition, computerized registries can support internal and external quality improvement and reporting requirements. While computerized disease registries do improve providers' capabilities with regard to identifying and following up with patients who have gaps in their care, they do have limitations. Most significantly, the majority of computerized disease registries manage only selected information related to a few diseases. Also, often the data included is not the legal documentation of care. Thus, with stand-alone computerized disease registry products, providers need to have other means for maintaining patients' health records and billing, either electronically or on paper.  

Nonetheless, computerized disease registries are important tools for supporting care delivery and prevention for patients with chronic diseases. As with any health information technology (health IT) tool, the implementation of a computerized disease registry in a provider practice should include workflow analyses to ensure that the functionality is being used appropriately and optimally.