Using Computerized Registries in Chronic Disease Care Prepared by First Consulting Group February 2004 Using Computerized Registries in Chronic Disease Care Prepared for: CALIFORNIA HEALTHCARE FOUNDATION Prepared by: First Consulting Group Author: Jane Metzger February 2004 Acknowledgments This report was prepared by Jane Metzger of First Consulting Group. Melissa Buckley, Sophia Chang, and Sam Karp of CHCF, Erica Drazen of FCG, Michael Hindmarsh of Group Health of Puget Sound, and Lisa Dolan-Branton of the Bureau of Primary Health Care, HRSA reviewed the report. The author is grateful for the time and contributions of the many individuals in physician practices and community health centers listed in Appendix A. About the Author First Consulting Group is a leading provider of consulting, technology, and outsourcing services for health care, pharma- ceutical, and other life sciences organizations in North America and Europe. More information about FCG is available at: www.fcg.com. About the Foundation The California HealthCare Foundation, based in Oakland, is an independent philanthropy committed to improving California’s health care delivery and financing systems. Formed in 1996, our goal is to ensure that all Californians have access to affordable, quality health care. Additional copies of this report and other publications can be obtained by visiting www.chcf.org. ISBN 1-932064-57-5 Copyright © 2004 California HealthCare Foundation Contents 4 Executive Summary 7 I. Background Introduction to Chronic Disease Care Purpose of the Report 9 II. Introduction to Disease Registries Definition and Functions How a Registry Supports Chronic Disease Care Types of Registries 15 III. Using Disease Registries Point of Care Outreach to Patients Population Reporting 23 IV. Considerations in Getting Started Choosing between a Registry and an EMR with Registry Functions Choosing a Registry Application Costs to Consider The Registry Data Set Automating Data Entry into a Disease Registry Identifying Patients to Track in the Disease Registry Ensuring Data Quality Implementation 32 Appendix A: Interviewees from Provider Organizations 34 Appendix B: Profiles of Organizations Using Patient Registries 37 Appendix C: Examples of Computerized Disease Registry Tools 46 Appendix D: Glossary 47 Endnotes Executive Summary CHRONIC CONDITIONS ARE THE MAJOR CAUSE of illness, disability, and death in the United States, despite the fact that much is known about how to prevent chronic disease and delay or avoid many related complications. A systematic and comprehensive approach to caring for patients with chron- ic disease has been shown to improve the quality of chronic care delivery. This approach includes a range of interventions, such as case management, physician feedback, clinical informa- tion systems to track patient care, adoption of clinical practice guidelines, and a focus on patient self-management skills. A disease registry is one type of clinical information system that is effective in supporting new models for delivering chronic care. By tracking patient information, a disease registry helps physicians and other members of the care team to identify and reach out to patients with gaps in care. It also prompts them to ensure that appropriate and timely care is provided during patient visits. The first disease registries were developed in the 1980s at Group Health of Puget Sound and Lovelace Health System. Evidence of gaps in care for patients with chronic disease, com- bined with growing evidence that a more systematic approach improves outcomes, has led a growing number of provider organizations to adopt disease registries as a primary tool for improving chronic care. New programs, such as the Pay-for- Performance initiative in California, are also increasing the interest in and adoption of disease registries. This report provides an introduction to the function and use of computerized disease registries, one option for improving patient information management. It is intended to help physi- cians, clinics, and medical groups get started in their own assessment of computerized tools to improve the management of patients with chronic diseases. 4 | CALIFORNIA HEALTHCARE FOUNDATION The disease registries discussed in this report are There is no standard design for disease registries computer applications used to capture, manage, in use today, but the following list of character- and provide information on specific conditions istics help to differentiate one registry from to support organized care management of another. patients with chronic disease. They provide ■ Source of registry application: Software physicians with three types of reports: applications can be developed locally, pur- ■ Printed patient reports at the point of care chased from a vendor, or obtained from provide information on specific conditions one of several organizations offering reg- and prompt provider teams to conduct istry applications for free (public domain). appropriate assessments, deliver recom- ■ Sponsorship: A registry can be provided by mended interventions, and capture infor- the local medical practice or medical group, mation to update patient records. a quality improvement organization or clinic ■ Registry-generated exception reports identify consortium, an independent practice associ- patients who are overdue for care or are not ation (IPA) or health plan, the federal gov- meeting management goals, and include ernment, or another organization such as a important patient information—such as last pharmaceutical company. visit and test dates—to develop an appropri- ■ Technology hosting: The software applica- ate outreach strategy for each patient. tion and database can reside on a PC or net- ■ Aggregate reports provide information about worked server at the provider organization, how well individual care teams and the or can be hosted by a commercial vendor or overall provider organization are doing in other external sponsor (where the data and delivering recommended care to the patient software program reside) and are accessed population. over the Internet or private network. Computerized registries generally require a data- ■ Single or multiple condition: A registry base to store integrated patient information, as can manage a single disease or multiple well as a software application that can sort the conditions. information into different views and reports as ■ Stand-alone or integrated into an EMR: described above. This ability to provide multiple A registry can be a separate application or views of patient information makes computer- part of a comprehensive electronic medical ized registries a more powerful tool for popula- record. tion management than the paper-based reg- istries often used to track conditions such as ■ Source(s) of patient information: Data can cancer. Registries generally manage a much be entered manually or through electronic smaller amount of patient information than feeds from sources such as practice manage- electronic medical records (EMRs), and focus ment systems, claims systems, laboratory or on selected information relevant to one or more pharmacy systems, or EMRs. chronic diseases. Some EMRs for the physician ■ Configurability: A software application can practice also include registry functions for be pre-configured with data elements and population management. This report focuses pre-programmed with reports that cannot on stand-alone disease registries that are not be modified, or it can be modified to collect integrated into an EMR. Using Computerized Registries in Chronic Disease Care | 5 additional data or to provide reports specific Ensure up-to-date, complete, and accurate to the care management goals of the patient information. Because of the burden of provider organization. manual data entry, electronic feeds of data from practice management, laboratory, claims systems, Successful implementation of a disease registry or EMRs are highly desirable. Careful attention requires physicians and medical groups to consid- to the quality of the data is needed, regardless of er several important issues: the source of registry information. When data Select the registry that will support the chronic from external systems are used, daily feeds and conditions of interest and track the desired care successful patient matching are required. Even interventions. Each physician practice or med- with electronic data feeds, local care teams must ical group decides which conditions to tackle maintain patient lists and manually record data and which disease management guidelines to that are unavailable in electronic formats, as adopt. These decisions in turn define the infor- well as information on patient services obtained mation that should be collected in the disease elsewhere and reasons for non-compliance with registry. The design, configurability, and scala- targeted interventions and services. bility of the registry application also need to Integrate registry use into the workflow of support the way the practice expects to deliver the clinic or practice. Using a registry requires chronic care over time. care teams to rethink how they prepare for and Choose a suitable registry application that fits conduct patient visits, create new processes for within technical and financial constraints. following up with patients, and produce and Physician practices and medical groups already distribute feedback reports. Practices and larger planning to acquire an EMR should consider organizations profiled in this study all reported selecting a product that includes the functions of that successful transition to new processes is hard a disease registry, or one that can easily interface work. Each had at least one individual overseeing with a disease registry. A number of disease reg- the registry and process elements of chronic istry application options are available, either at disease management. A physician executive or no cost or a lower cost than an EMR. The tech- clinical leader is also important for building and nology for a stand-alone disease registry is fairly sustaining the program. simple—involving one or more computer desk- Physician practices starting work on a more sys- tops and connection to the Internet or private tematic approach to chronic disease care can network. Applications can be hosted locally on a obtain information about disease registries and PC or networked server or managed by a sponsor how they are used by participating in chronic or vendor at another location. It is important to disease collaboratives and attending conferences consider the pros and cons of maintaining offered by groups such as Group Health of Puget patient information in a database under local Sound, the Institute for Health Care control or of taking advantage of remote hosting, Improvement, and an increasing number of which requires less technical expertise. Regardless regional and state quality improvement organiza- of where patient data reside, it is important to tions. Community health clinics also have access take appropriate measures to protect the security to a number of programs and publications of patient information. offered by the Health Resources and Services Administration’s Bureau of Primary Health Care. 6 | CALIFORNIA HEALTHCARE FOUNDATION I. Background CHRONIC CONDITIONS SUCH AS DIABETES , asthma, and coronary artery disease are the major cause of ill- ness, disability, and death in the United States. In 2000, the medical cost of chronic disease amounted to 75 percent of health care spending.1 The Institute of Medicine (IOM) singled out four chronic conditions—asthma, hypertension, diabetes, and coronary heart disease—among 20 priority areas for improving quality of care.2 There is growing interest in a more systematic approach to managing patients with chronic disease. This interest is due to a growing awareness of the large gap that exists in delivering care that can prevent or delay many of the complications of chronic disease. McGlynn et al. recently assessed gaps in care in a ran- dom sample of 6,712 adults in 12 different metropolitan areas. Patients with chronic disease received only 56 percent of rec- ommended care; those with diabetes received only 45 percent of care known to reduce costly and debilitating complications.3 New comprehensive approaches for chronic disease care – incorporating a variety of interventions such as case manage- ment, physician feedback, clinical information systems such as disease registries, adoption of clinical practice guidelines, and a focus on patient self-management skills—were first developed at Group Health of Puget Sound in Washington and Lovelace Health System in New Mexico many years ago. Elements of this model have begun to spread more broadly to physician organizations thanks to nearly 10 years of programs organized by the MacColl Institute (www.improvingchroniccare.org), as well as other groups such as the Institute for Health Care Improvement (IHI) (www.IHI.org), the Institute for Clinical Systems Integration (ICSI) (www.icsi.org), and the Bureau of Primary Health Care, under the Health Resources and Services Administration (HRSA) (www.healthdisparities.net). These comprehensive approaches to chronic care can be very effective at managing chronic disease.4,5 According to one review, 5 32 of 39 studies of interventions based on the model showed improvement in at least one process or outcome meas- ure for diabetic patients; 18 of 27 studies involving three differ- ent chronic conditions also demonstrated lower health care costs and/or lower utilization of services. In Crossing the Quality Chasm, the Institute of Medicine IOM concluded, “The cur- Using Computerized Registries in Chronic Disease Care | 7 rent delivery system responds primarily to acute ■ Integrated Healthcare Association Pay- and urgent health care problems, emphasizing for-Performance—a statewide effort of diagnosis, ruling out serious conditions, and seven health plans in California to use com- relieving symptoms. Those with chronic condi- mon performance measures for health main- tions are better served by a systematic approach tenance organization (HMO) members and that emphasizes self-management, care planning to pay quality bonuses to physician groups with a multidisciplinary team, and ongoing based on that performance (www.iha.org). assessment and follow-up.”6 ■ The Physician Group Practice The IOM also emphasized the importance of Demonstration—a 3-year project of the “good information about patients and their care Centers for Medicare and Medicaid Services to improve outcomes.” Paper registries have (CMS) to pay physician fees for Medicare been used in the past to track patients by using a bonus pool important information about Physician organizations derived from savings achieved using disease registries conditions such as cancer. through improvements in care. Computerized systems for (www.cms.hhs.gov). Percent managing the necessary These programs, combined patient information have the Diabetes 40.3 with the expectation that the advantage of quickly providing Asthma 31.2 pay-for-performance model is multiple views of the informa- Congestive Health Failure 34.8 likely to spread, are accelerat- tion to support chronic care, Depression 15.7 ing the incorporation of com- including reminders during puterized tools such as disease encounters, lists of patients Survey of 1,040 physician organizations by Casolino et al. 7 registries into patient care. needing follow-up, and reports providing feedback to physi- cians about how well their patients are doing. Purpose of the Report A growing number of clinics and physician This report provides an introduction to the organizations have adopted a computerized dis- function and use of computerized disease reg- ease registry or an electronic medical record to istries, one option for improving patient informa- provide this information support. Registries are tion management. It is intended to help physi- usually focused on the information needed for cians, clinics, and medical groups get started in specific chronic care conditions. Though cheaper their own assessment of computerized tools to and easier to implement than an electronic med- improve the management of patients with ical record, registries are a less comprehensive chronic diseases. clinical system. Practical information about the registries avail- The IOM and others have identified numerous able today and how physician practices are inte- barriers to widespread adoption of new models grating registries into regular workflow was for chronic care.6, 8 A fundamental barrier is the obtained through attendance at collaborative lack of financial incentives for physicians to learning sessions, discussions with registry pio- change practice to treat patients with chronic neers, and interviews with current users in many disease proactively. Recently large-scale demon- different practice settings (see Appendix A). This stration projects have been launched to experi- report provides general information about disease ment with financial incentives: registries and suggestions for getting started. 8 | CALIFORNIA HEALTHCARE FOUNDATION II. Introduction to Disease Registries REGISTRIES FOR CHRONIC DISEASE MANAGEMENT are not new. In the late 1980s, Group Health of Puget Sound built one of the first registries—called a “clinical- ly related information system”—regarded today as the pioneering effort in demonstrating the feasibility and value of using technology to track condition-specific information for use in primary care.10 As disease reg- istries have been adopted more widely, their definition and function have evolved along with a better under- standing of how to manage a population of patients with chronic disease. “Health care teams that have access to a registry can call in patients with specific needs, deliver planned care, receive feedback on their performance, and implement reminder systems.” Wagner et al. 9 Definition and Functions A computerized disease Disease registries generally supplement rather than replace registry is a software individual patient medical records and should support application for capturing, providers in the treatment setting. They help assure that data managing, and providing are complete, readily available, and arranged to make it easier access to condition- for care teams to deliver appropriate care and follow-up to each specific information for a patient. The different views and patient lists that a computer- list of patients to support ized registry can provide are a big advantage over paper-based organized clinical care. registries, long used in health care to track information for patients with certain conditions (e.g., tumor registry). Registries differ from electronic medical records (EMRs) in that they manage only selected information relevant to one or more chronic diseases rather than more comprehensive infor- mation 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 primarily 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. The basic functions of a disease registry are depicted in Figure 1. Using Computerized Registries in Chronic Disease Care | 9 Figure 1. Basic Functions of a Disease Registry Registry provides reports or displays Electronic patient infor- Condition-specific patient mation from external information is entered into systems is sometimes the registry (in the physician also extracted and fed practice or by a program into the registry via an manager at another location) inferface To provide status reports on the care program: ● As feedback to physicians For use at the point of care To use in identifying patients who may need follow-up care about their performance ● To track programs with population management As shown, the major function of a disease registry ■ Between visits, for use in identifying is to provide multiple views of information about patients with apparent gaps in care (patient a list of patients for use in three situations: lists, called exception or outreach reports), and ■ At the point of care, to provide patient-spe- cific information (e.g., lab results, medica- ■ Periodically, to provide status reports show- tion lists) and advice to support decision ing aggregate information about the patient making (typically a report or display called a population for use in gauging progress and visit planner or patient profile and often continually improving care delivery (popula- including specific treatment recommenda- tion reports). tions), Delivering these functions requires that the reg- istry manage patient information in a database and include an application that can deliver multi- ple views of that information. 10 | CALIFORNIA HEALTHCARE FOUNDATION How a Registry Supports Chronic Disease Care A registry provides critical information for the management of individual patient conditions. The basic registry functions described below are typically available in all disease registries; advanced functions are found in more complex designs. Table 1. Basic and Advance Functions of Disease Registries Registry Functions Elements of Chronic Care Management* Basic Advanced Ensure regular follow-up by the ● Track desired intervals for next ● Provide telephone call lists and/ care team visit, test, or contact based on or mailing labels and patient care guideline. reminder letters for follow-up. ● Allow clinicians to record patient- ● Display next appointment date specific interval for next visit or for patients on outreach or intervention. exception lists. ● Provide patient lists sorted according to overdue status (e.g., no HbA1c during last 6 months) or patient status according to management control (e.g., HbA1c>8.0 or personal goal). ● Provide outreach or exception lists for each physician or care team. Embed evidence-based guidelines into ● Incorporate information about ● Include prompts to recommend daily clinical practice care management guidelines into changes in patient care plan using reports and displays for care guideline-based algorithms and teams. patient-specific information. Integrate specialist expertise and ● Incorporate care guidelines for ● Incorporate information about primary care primary care with input from rel- decision criteria for patient refer- evant specialists. ral to specialist in patient displays and reports for care teams. ● Include prompts recommending referrals for specific patients using guideline-based algorithms and patient-specific information. Provide timely reminders for ● Track desired intervals for next ● Send email notification to physi- providers and patients visit, test, or contact based on cians or care team when registr y care guideline. patients are seen in emergency department. ● Allow clinicians to record patient- specific interval for next visit or intervention. ● Include information about due date for visits and other interven- tions in patient reports and displays. Identify relevant subpopulations ● Track information for identified ● Assist with identification of new for care subpopulations of patients with patients with a chronic condition a designated chronic condition. by reviewing electronic informa- tion in external systems. ● Manage the list of active and engaged patients for each PCP ● Stratify patients according to and care team. severity of condition. *Improving Chronic Illness Care, www.improvingchroniccare.org Using Computerized Registries in Chronic Disease Care | 11 Table 1. Basic and Advance Functions of Disease Registries (continued) Registry Functions Elements of Chronic Care Management* Basic Advanced Facilitate individual patient care ● Provide a condition-specific view ● Recommend changes in patient planning of current patient status and care plan using guideline-based progress. algorithms and patient-specific information. Share information with patients and ● Patient information available to ● Patient information available to providers to coordinate care all members of the primary care case managers, specialists, and team. others involved in care. ● Record patient self-management ● Patient version available from plan for subsequent access by care registry including information team. on status, care plan, and self- management plan. Monitor performance of practice ● Provide population reports for ● Provide graphic displays of trends team and care system lists of patients and user-specified in user-specified conditions of conditions of management con- management control and guide- trol (e.g., HbA1c < 8) or guide- line compliance in population line compliance status (e.g., two reports. HbA1c tests in past year). ● Provide tabular analysis of trends in any of the above. ● Provide population reports for individual physicians and care teams, clinics, and medical groups. ● Provide peer comparison reports for individual physicians and care teams and clinics. *Improving Chronic Illness Care, www.improvingchroniccare.org 12 | CALIFORNIA HEALTHCARE FOUNDATION Types of Registries There is no standard design or technology for disease registries. The following list of characteristics describes the differences in registry applications and the options available for new users. Table 2. Differentiating Characteristics of Patient Registries Types of Registries Characteristic Description of Possibilities Explanation Source of Registry Application ● Homegrown (designed and pro- Early registries were homegrown. grammed locally) Today they are also available for purchase or free access (sometimes ● Commercial registry product only to participants in a particular ● Open source or public domain program). (available free of charge from a government agency or other source) Sponsorship ● Local practice, medical group, or In additional to obtaining a registry health system on their own, physicians and med- ical groups can obtain registry soft- ● Independent practice association ware from other organizations that (IPA) or health plan are also interested in improving ● Government agencies chronic disease management. ● Other group, e.g., pharmaceutical company Technology Hosting ● Registry application and database Remote access (via the Internet, a reside on a PC or network server private network, or dial-up) has at the provider organization. made registries more feasible in provider sites lacking IT infrastruc- ● Registry application and database ture and management skills, but are hosted by a commercial ven- raise the need to address security dor or other external sponsor concerns. (e.g., IPA, health plan) at another location. Single or Multiple Condition ● Single disease, such as diabetes or When separate disease-focused reg- asthma istries are used in the same patient population, separate displays and ● Multiple conditions with inte- reports need to be consulted to grated reports for patients with manage any patient with multiple multiple diseases conditions; duplicate entry may be required for information such as weight and blood pressure. Stand-alone ● Separate application from EMR When an EMR is being used, ideally the care team consults one electronic source of condition-spe- Integrated into an EMR ● Registry functions and displays cific patient information and part of EMR used in the practice reminders; however, not all EMRs incorporate registry capabilities. Source(s) of Patient Information ● Manual entry The more registry information obtained electronically from other ● Electronic feeds from practice systems, the lower the burden of management, claims, laboratory, manual data entry. Electronic feeds pharmacy, or EMR systems or avoid possible transcription errors data warehouses and often make it feasible to track ● A combination of manual and a more comprehensive data set. electronic data Using Computerized Registries in Chronic Disease Care | 13 Table 2. Differentiating Characteristics of Patient Registries (continued) Types of Registries Characteristic Description of Possibilities Explanation Configurability ● Pre-configured with data A configurable registry program elements to track for one or permits the practice to change the multiple conditions data sets and visit planner to match the care management targets of the ● Configurable to specific care local program and to respond more management goals of provider quickly to changes in clinical organization (data elements, knowledge. Ad hoc reporting per- recommended time intervals, mits the practice to design its own algorithms for patient-specific outreach and population reports. recommendations) 14 | CALIFORNIA HEALTHCARE FOUNDATION III. Using Disease Registries “The process of organized care TO BE EFFECTIVE, A DISEASE REGISTRY MUST BE is humbling. It is relatively an active tool used routinely by those within the practice (and possibly within the larger organization) who care for patients easy to collect the registry data, with chronic disease. The discussion below reviews how disease much more difficult to act registries have typically been incorporated into three processes: on it.” treating patients, providing outreach to patients between visits, Dr. Charles M. Kilo and assessing the effectiveness of a practice’s efforts to deliver Greenfield Health quality care. Portland, OR Point of Care When the patient is meeting with the physician, disease reg- “If a productive patient-clini- istries provide easy access to complete, relevant patient infor- cian interaction is at the heart mation through a printed patient report, sometimes known as of a good visit, then informa- a visit planner or patient profile. The report presents a snap- shot of the patient’s condition, both reminding the care team tion is the life blood flowing that the patient has one or more chronic conditions and saving through that interaction.” them the time of searching for condition-specific information Michael Hindmarsh in the patient’s medical record.11, 12 Improving Chronic Illness Care Group Health of Puget Sound Many registries in use today provide further support by inte- grating clinical guideline-based prompts into the patient report or profile, such as: ■ Guideline-based intervals for assessment, testing, and referrals (e.g., HbA1c every six months); ■ Interventions that are overdue according to clinical guide- lines; or ■ Text from the guideline about recommended intervals for care or treatment. More advanced, rules-based prompting incorporates patient- specific information and is able to generate customized care recommendations, such as: ■ “Consider an ACE inhibitor or ARB with evidence of renal disease,” where the diabetes patient has a co-morbid condition; or ■ “Recommend next HbA1c testing at 90 days because patient is not at goal for glucose control,” where a patient’s health is falling short of the desired outcome. Using Computerized Registries in Chronic Disease Care | 15 The patient report also records updates to patient The care team coordinates tasks to deliver information tracked in the registry for subse- services and update the patient report as quent data entry. Some registry applications rely required. Medical assistants and nurses use the almost exclusively on information available from registry report as they interview the patient, take other electronic systems to minimize the time and record vital signs, and order necessary servic- devoted to these tasks. es according to protocols for standing orders. Physicians can use the report for several purposes, Figure 2 describes the use of a registry in a setting including to: that is not fully automated. From a sticker on the patient’s chart, the receptionist notes that the ■ Communicate with care team members patient is on a registry, requests a printed patient about new services to arrange before the report or flow sheet, and attaches it to the patient leaves; patient’s chart. Registry patients might also be ■ Indicate to the receptionist when the next identified in the scheduling application used at follow-up visit should be scheduled; the front desk, and, in some practices, the patient record is printed and filed in the medical record ■ Serve as the encounter note to be filed in at the conclusion of each visit (to be referenced the patient’s medical record; and the next time) rather than printing a new one ■ Record updates to patient information for when the patient checks in. entry into the registry. Figure 2. Typical Workflow for Use of a Stand-alone Disease Registry at the Point-of-Care Patient reports and medical records are assembled for As a registry patient checks the visit in for a visit, receptionist prints a patient report for the registry During the initial assessment, a medical assistant or nurse refers to the patient report and records information updates Update patient reports Physician reviews information and care are collected and new recommendations in patient report, information enterend recording new diagnostic or assessment into the registry information and updating information about the care plan 16 | CALIFORNIA HEALTHCARE FOUNDATION Usually patient reports are collected for batch Group, a 200-physician IPA in Santa Cruz, entry by a designated individual in the practice California. Electronic feeds from a practice or at a central location, although sometimes a management system, local laboratories, and member of the care team performs this task. health plan pharmacy claims are combined with manually entered information. The inclusion of information from pharmacy claims lets a physi- Examples at the Point of Care cian determine whether or not prescriptions Figure 3 (see page 37) shows a visit planner from were actually filled. Customized patient recom- a locally developed (“homegrown”) registry and mendations are also incorporated, indicating, for used at Quello Clinic, an independent family example, the need for a retinal examination. practice medical group in six clinics (including urgent care) around Minneapolis-St. Paul, For the most part, care teams use paper copies Minnesota. The visit planner integrates data for of the patient profile, although they also have four diseases tracked by the registry—coronary online access to the registry application. From artery disease, hypertension, congestive heart fail- the online view, providers can access clinical ure, and diabetes. Each patient’s chronic diseases algorithms for recommendations generated by are indicated, and the bottom of the form only the software application and are able to send a applies to patients with diabetes. Laboratory copy of the visit planner to any referral physician test results and dates are fed electronically into involved in the patient’s care. the registry. All other information is entered A screen display from a registry integrated into an manually. EMR is shown in Figure 6 (see page 40). At Figure 4 (see page 38) shows an example of PeaceHealth, physicians and care managers use an the paper visit planner used at Center Jersey EMR for prescription writing, documentation, Physician Network, an independent practice and the management of lab results. The EMR association (IPA) with 40 primary care now includes a diabetes registry jointly developed physicians in 10 different sites. The source is by PeaceHealth and IDX. Paper medical records PatientPlanner™ (from DocSite, a commercial are rarely used, and most care teams use this vendor), which is used to manage asthma and online version during diabetes wellness visits, diabetes. although a printed version is also available. Care teams view a flow sheet display, including a time The medical director has set up the registry to series view of the data tracked for diabetes care. track the specific interventions and intervals established by physician committees in the IPA. Much of the information needed for the reg- The example shown for diabetes provides a istry—demographics, problem list, laboratory graphic display of the two major clinical indica- results, and prescription orders—is available from tors—blood glucose control and cholesterol level. orders and documentation entered routinely into Several areas of the form are designed for record- the EMR. Nurses and medical assistants, as well ing updates to key information, including entries as physicians, enter additional information that can be recorded in “today’s action” or required in the diabetes registry, such as docu- “today’s answer.” Due dates for interventions are mentation of a foot exam or patient use of calculated based on the service date recorded in aspirin. For each data element, an extension the registry, or physicians can designate a patient- screen structures the entry appropriately, as specific interval for particular interventions. shown in (a) for a “yes/no” entry and in (b) for a year. The visit planner shown in Figure 5 (see page 39) was locally developed by Physicians Medical Using Computerized Registries in Chronic Disease Care | 17 Outreach to Patients The typical workflow in Figure 7 begins with a Tracking patients between visits to identify those care team member reviewing a printed patient who could benefit from follow-up care is almost list or sitting at a computer terminal to view that impossible without a registry (or EMR incorpo- information online. rating a registry). Patient lists or displays can be requested for patients with different types of care deficiencies. “The availability of a list of all patients The richer the registry’s data set, the greater the and a few other key data elements pres- possibilities for examining subgroups of patients. ents opportunities to remind patients and Most registries include standard reports and per- mit users to create patient lists for specific date physicians of needed follow-up or preven- ranges and interventions or status indicators. tive services.” Wagner et al.13 Figure 7. Typical Workflow for Use of a Disease Registry to Identify Patients for Outreach From printed patient lists or on-line displays the care team identifies On a regular basis the registry patients with gaps in recommended is consulted about patients care or not meeting goals. who could possibly benefit from follow-up contact or care Target patients are contacted by telephone or correspondence Information updates about patient panel, patient status and other registry data is entered into the application Care team review each patient to determine appropriate follow-up strategies for each patient 18 | CALIFORNIA HEALTHCARE FOUNDATION Examples of Types of Registry Exception or Outreach Reports for Groups of Diabetes Patients Last visit more than xx days ago Last HbA1c value over xx.x No HbA1c value last xx days No self-management goal last xx days No retinal exam last xx months No pneumovax in last xx years Gap in medication refills > xx days Care teams can use patient lists and other infor- “We have tried many approaches to institu- mation such as future appointments already tionalizing outreach as a monthly activity: booked in the scheduling system to develop an ● First we sent exception lists directly to outreach strategy for each patient. The next step is to contact targeted patients by telephone or physicians with limited success. correspondence. Some registries incorporate ● Next we sent them to clinic managers. patient contact information in outreach or excep- tion lists, others can produce telephone calls lists Several were motivated to take action, or mailing labels. but overall this wasn’t successful either. ● We then managed to designate someone During the outreach process, care teams often become aware of problems with registry informa- in each practice as a disease manage- tion—such as finding that the patient has moved ment specialist, with 2 hours allocated or has a different primary provider, or discover- ing that the latest test information is missing in for each physician. The individual sat the registry. Care team members either enter down with physicians to discuss patient updated information directly or communicate lists and assisted in contacting patients. the changes to a designated person (or registry manager) via paper, telephone, or fax. This worked reasonably well, but was hard to sustain due to severe cost pres- Effective implementation requires carving out sufficient time to review patient lists on a regular sure recently. basis. Because the outreach process is new, the ● Now we offer the assistance of a central transition to integrate it into the practice routine resource person to help practices with often is more difficult than the changes in proce- dures around patient encounters. any aspect of outreach. This is not quite as effective as the specialist role. Patient lists for outreach purposes are designed to allow care teams to examine different sub- Eventually we have to work toward each groups of patients with possible gaps in care. care team totally owning this process. That Registry applications support this function in is logically where the responsibility lies and several different ways. how to get the best results.” Randi Burnham, N.P., team leader, Clinical Services, Bellin Medical Group Green Bay, WI Using Computerized Registries in Chronic Disease Care | 19 Examples: Outreach from claims or manual entry. The column “new The outreach reports from a locally developed pt” is for verifying that a new registry patient registry at Cambridge Health Alliance (CHA), a identified from claims information is indeed a regional public health system in Massachusetts, panel patient and has diabetes. Above each data can be viewed online by authorized users. Figure column in the report, prompts such as “2 per 8 (see page 41) shows one of several possible dis- year” remind the care team of recommended plays focused on patients with asthma. intervals for interventions and services. Following the summary of registry patients on long-time control medications are lists of the Population Reporting actual patients. By clicking on any one of these A disease registry can also produce population displayed names, users can access a patient sum- reports with different views of aggregate informa- mary to help them as they consider possible out- tion about the process and outcomes of care reach strategies. The CHA disease registry is pop- management. Registry applications typically offer ulated with data from the hospital information a number of pre-configured that users can system and permits users to access appointment request for specific patient population(s) and/or information from any patient record in the date ranges. registry application. This feature makes it much Two primary uses of population reports are easier to to focus outreach efforts appropriately shown in Figure 10: feedback to physicians by determining which patients already have about the status of their own patients and reports upcoming appointments. to the entire provider organization about the Other reports available from the asthma registry patient populations under its care. show patients who were hospitalized or had a Both reports provide a check on the actual visit to the emergency room in the past year, progress made towards delivering recommended including the reason for the hospitalization or care. Physician feedback reports often include emergency care. Another view shows the panel peer comparison data. Population reports often of patients by severity or without a recorded compare results for different practices and clinics, asthma action plan. as well as show annual trends as a gauge of A different style of outreach report shown in progress in the overall program. Figure 9 (see page 42) is from the registry used by 13 primary care practices at Thedacare in “Distributing feedback reports did make a northeastern Wisconsin. One designated person difference, especially with physicians who in each practice prints and distributes patient lists are low performers.” to care teams on a monthly basis. The registry Sherry Catlin, M.D., medical director tracks NCQA-recommended services and inter- Florence Clinic, PeaceHealth ventions for chronic disease and preventive care. Some of the tracked data are obtained electroni- Often medical directors ensure that population cally from claims processed by Touchpoint, a management results are a regular agenda item at health plan partially owned by Thedacare. For medical staff and practice/clinic meetings. Some patients with other insurance, care teams or larger organizations include results as one com- disease management specialists in each practice ponent of a regular performance report, which enter missing information directly into the reg- tracks a set of quality indicators (sometimes istry. In Figure 9, the source of data is noted, i.e., called a scorecard or dashboard). 20 | CALIFORNIA HEALTHCARE FOUNDATION Figure 10. Typical Workflow for Use of Population Reporting from a Disease Registry Reports serve other purposes: ● NCQA reporting ● Patient lists for chart audit ● Performance dashboard Registry provides printed or displayed views of aggregate On a regular basis, records are information about the patient requested from the registry population. displaying aggregate information about the population being managed Information on progress in population manage- Physicians receive feedback Population results are discussed ment stimulates ongoing about how well they are at medical staff and practice improvements in care doing in delivering chronic care in comparison with meetings results for peers or for population overall “Part of the cultural change is realizing Reports are also used by committees in the prac- tice or larger organization that are responsible for that the tasks of organized care manage- continually improving care. These reports can ment are constant and ongoing. Care lead to changes in the approach to delivering a teams are energized when they first get particular intervention (such as setting patient self-management goals) or targeting specific care care organized in this way. After that the teams or practices for hands-on coaching or assis- leadership of our medical director and tance with the care model. feedback reporting become important to Reports about patient populations come in many keep up the momentum and the energy.” different formats, suited to different audiences Terry Murray, guidelines manager, Quello Clinic and purposes. Using Computerized Registries in Chronic Disease Care | 21 Examples: Population Reporting At Intermountain Health Care, regional medical directors periodically distribute printed feedback reports to the 500-physician medical group. Physicians and medical directors can also view population reports online over the intranet. Figure 11 (see page 43) shows an online view of trends in delivering recommended diabetes inter- ventions for a physician’s patient panel. Results for the physician (blue) are compared with those for the region (green) and health system as a whole (red). Other views of physician-level population reports include a provider detail report with a drill-down view to patient lists. Figure 12 (see page 44) shows one type of popu- lation report available from CVDEMS, “free- ware” developed for organizations participating in chronic disease management programs of the Bureau of Primary Health Care, HRSA/HHS. The registry application will segment this report for patients with diabetes or cardiovascular dis- ease by clinic, by provider, or for the entire organization using the registry. The example shown is for diabetes. The three sections of the report provide a demographic breakdown of the population, visit-related information tracked in the registry, and then aggregated laboratory results. Users designate the desired date range when requesting reports. Figure 13 (see page 45) comes from the diabetes management program in the Family Practice Center, a resident-staffed clinic at Sutter Medical Center of Santa Rosa. From CVDEMS, the reg- istry application used for diabetes management, the program director exports data into a standard spreadsheet program and produces trend reports. The graphs include information about clinical goals, results for different subgroups of patients, and annotations showing when changes were instituted in diabetes care at the clinic. 22 | CALIFORNIA HEALTHCARE FOUNDATION IV. Considerations in Getting Started Choosing between a Registry and an EMR EMR Investment Plans in with Registry Functions Physician Practices Since many physician practices plan to invest in EMRs at some Already invested 31.6 % point, physicians considering their options often review the tradeoffs involved in adopting a registry or EMR. Registries Within 12 months 14.5% are cheaper to obtain and operate, but EMRs offer a greater Within the next 24 months 27.7% range of functions and potential value. Not in the foreseeable future 26.1% When considering the purchase of an EMR, cost is always the National Survey of physician executives in 2002 14 major issue—not just the cost of acquiring the system, but also of implementing and maintaining it. In practices that can afford an EMR, it is important to verify that products being considered support registry functions. Two functions that are critical to maintaining the patient list and to capturing specific data elements are most likely to be missing. Critical Registry Functions for EMR Function Explanation Maintain patient list for Needed to identify active, purposes of ongoing disease engaged, and condition-appropri- management ate patients for outreach and dis- ease management program moni- toring. Many EMR designs rely on patient problem lists. Capture the specific informa- Few EMR applications include tion needed to track patient fully structured notes in the prod- status and care for chronic dis- uct design or use. In the absence ease management of these, mechanisms are needed for capturing coded information (to facilitate analysis) used to track patient status and care. Examples include family history and other risk factors, self-assessment scores, patient compliance with self-man- agement practices, delivery of patient counseling, and services received elsewhere. For more information about EMRs, refer to Electronic Medical Records: A Buyer’s Guide for Small Physician Practices. Choosing a Registry Application Physician practices have several different options for obtaining disease registry software: Build a registry from scratch. Several practices and health sys- tems using registries today have developed their own applica- Using Computerized Registries in Chronic Disease Care | 23 tions; many have advanced features and are either nominal price—by organizations with a common stand-alone or integrated into a clinical system. interest in improving chronic care, or whose User-developed registries are appealing because business model is to provide registry services by the builder retains complete control over func- hosting data. In these cases, where the applica- tionality and can ensure that it meets local needs. tion and database are hosted, how data and data On the other hand, development and ongoing access are managed, the adequacy of provisions maintenance require internal skills in program- for security and patient privacy, as well as other ming and database management. requirements for HIPAA, are important con- cerns. For some providers, it is important to Download public domain software. Public domain retain all patient data in a database under local software—which is available for use by the gener- management. Others view remote hosting as a al public without licensing or fees—is the most better fit with local skills and resources and feel prevalent type of registry software in use today. comfortable that the data will be protected. Two examples of public domain registries are CDEMS (Chronic Disease Electronic The registry’s cost, installation and management Management Systems) and the Cardiovascular complexity, and fit with the organization’s and Diabetes Electronic Management System processes for chronic disease management are all (CVDEMS). The majority of the products were major considerations in choosing the right appli- developed by agencies of the federal government cation. A companion report, Chronic Disease or quality improvement organizations (QIOs) in Registries: A Product Review,15 details the charac- various states. The tools are primarily simple, teristics of registry applications available today. Microsoft Access-based, without sophisticated architecture or in-depth functionality. They are Costs to Consider generally limited in the number of users and in the amount of data that can be used and stored The monetary costs of implementing a disease efficiently. Their greatest advantage is that they registry are relatively low. The more substantial are free and are relatively easy to use, although costs are in labor to manage and maintain the the physician practice may need a software system and are more difficult to estimate. license (for Microsoft Access). Most registries are hosted locally in the physician Purchase commercial registry software. A small num- practice on a PC or networked server, or they are ber of vendors sell private, stand-alone registry hosted remotely and accessed over a high-speed software. Commercial software often has a more line or via dial-up connection. Physician practices sophisticated and scalable architecture; a large need one or more computer desktops and an number of users can enter or view data simulta- Internet or intranet connection, both of which neously and the databases accommodate multiple most practices already have. conditions and are optimized for large amounts Registry applications themselves can also be of data. Disadvantages of private software include obtained without any financial outlay, either by the cost, customization options (sometimes using public domain software such as CVDEMS involving additional cost), and the possible (although a license to Microsoft Access or other instability of the vendor. The cost of commercial database application may be required) or obtain- products varies considerably and companies use a ing it from a parent organization (IPA, health variety of pricing models, but they often range at system) or other sponsor. Local programming of $500 to 600 per user, per year. a registry is often carried out through the skill Use a registry offered by a health plan, pharmaceu- and motivation of internal staff member(s), tical company, or other external sponsor. Registry rather than through hiring external resources. applications may be offered—for free or at a At Physicians Medical Group of Santa Cruz, the 24 | CALIFORNIA HEALTHCARE FOUNDATION The “soft” costs of setting up and managing a Computer desktops in physician registry, however, can be substantial and should practices: be considered before committing to using the Reception/front office 92% of practices tool. A significant amount of labor is required to Back office/billing area 89% enter and update patient data, generate patient lists, conduct outreach programs, and generally Administration 84% maintain the registry. For the most part, tasks Physician offices 82% related to the registry are absorbed by existing Type of Internet connection: staff. The challenge is to find enough time in the busy environment of a primary care practice to T-1 45% of practices accomplish the necessary work. DSL 36% Dial-up 13% “I wish I could get more people to do a Cable Modem 12% registry. It works and it isn’t expensive. Other 3% We developed our own and have reorgan- 16 HIMSS/AstraZeneca Survey ized work rather than added staff.” Terry Murray, guidelines manager, Quello Clinic approximately $100,000 programming effort was largely funded through grants. In some larger The Registry Data Set organizations, the resources of the corporate IS The data collected in a disease registry depends Department can be focused on this effort. upon what care interventions care teams want to Costs of commercial registries typically vary deliver and the data needed to track delivery to with practice size and support services included their patients. Guidelines for disease and wellness in the agreement, but are generally lower than management are available today from numerous costs of EMR products. For example, a Patient credible sources including the Agency for Planner™ from DocSite can be obtained for Healthcare Research and Quality (www.guide- about $500 per physician, per year. lines.gov), Institute for Clinical Systems Integration, the American Diabetes Association, Table 3. Possible Sources of Disease Registry Data: Specific Example of the Integrated Healthcare Association Pay-for-Performance Measures for Asthma and Diabetes Management Measures and Sources Measure Claims/Practice Pharmacy/ Laboratory EMR/ Management Medication Claims Manual Entry Asthma Patients with Patient demographics Prescription for Severity of disease persistent asthma (age) and insurer inhaled (intermittent or receiving dispensed corticosteroids persistent) inhaled corticosteroids (three age groups) Diabetes Patients with Type 1 Patient demographics Patients on insulin Date of HbA1c test or 2 with evidence (age) and insurer, or oral hypoglycemic of HbA1c screening date of HbA1c test (18-75 years) Using Computerized Registries in Chronic Disease Care | 25 and others. Clinical committees typically use “We’ve learned the importance of includ- these as their starting point for determining the ing staff who will ultimately be responsi- care recommendations for their medical group or health system, which in turn help define the ble for entering registry information desirable information set for the registry. in coming up with the data elements to be tracked. That’s the ideal time for a “We have gotten pretty good at making reality check.” progress in small steps, rather than boil- Irina Gruben, quality data analyst ing the ocean with the ideal, mega-list of Cambridge Hospital Alliance data to track. With diabetes, we started Oftentimes, clinical committees responsible for with 8-10 data elements.” disease management programs wish to track a John Haughom, M.D., senior vice president larger data set than is practicable because having Healthcare Improvement, PeaceHealth more data always seems better. In the end, the Table 4. Possible Sources of Disease Registry Data for the Diabetes Quality Improvement Project Measures and Sources Measure Claims/Practice Pharmacy/ Laboratory EMR/ Management Medication Claims Manual Entry HbA1c testing HbA1c+ (at least one per year) Highest risk HbA1c HbA1c* level (>9.5) and glyco-hemoglobin control distribution Monitoring for Patient on insulin Screening test for Patient on insulin, nephropathy microalbuminuria* documentation (screening within (four possible) of assessment last 2 years under HbA1c + of nephropathy stated conditions) Lipid profile LDL-C+ LDL-C* (last 2 years) and LDL-cholesterol control (<130 mg/dL); lipid control distribution Hypertension control Blood pressure (<140/90) and blood pressure distribution Eye exam (dilated, Eye exam+ (CPT) Patient on insulin HbA1c* Documentation in the past year of eye exam/ under stated retinopathy (Y/N) conditions based on and assessment date HbA1c) Comprehensive Documentation of foot exam exam components (protective sensation, vascular status, visual inspection) *Date and value. +Date 26 | CALIFORNIA HEALTHCARE FOUNDATION ideal data set is usually scaled back to be more Sample data sets and possible data sources are realistic. In addition, once core data elements shown below for the pay-for-performance meas- are fully implemented, it is usually possible to urement sets for asthma and diabetes from the add additional elements once care improve- Integrated Healthcare Association.17 These data ments have been made and the entire care team elements constitute the information needed to understands (and agrees with) the importance participate in the pay-for-performance program. of using a registry. As shown in Table 4, more comprehensive data would be required to be in accordance with the Table 5. Possible Sources of Disease Registry Data Needed for Selected Guidelines for Hypertension Management from JNC7 Measures and Sources Guidelines* Claims/Practice Pharmacy/ Laboratory EMR/ Management Medication Claims Manual Entry Recommend lifestyle Demographics (age) Blood pressure, modification if lifestyle modification systolic BP counseling ≥120 mmHg or diastolic BP ≥80 mmHg Thiazide-type diuretic Demographics (age) Thiazide-type Blood pressure if systolic BP medication = 140-159 mmHg dispensed or diastolic BP = 90-99 mmHg Two-drug Demographics (age) Thiazide-type Lifestyle modification combination diuretic and ACEI counseling if systolic BP or ARB or BB ≥160 mmHg or or CCB dispensed diastolic BP ≥100 mmHg If systolic BP Thiazide-type Blood pressure, ≥140 mmHg or diuretic, ACEI, heart failure, diastolic BP ARB, BB, or post-MI, high ≥90 mmHg and AldoANT dispensed coronary disease other cardiovascular (appropriate to risk, diabetes, chronic risk factors, indication) kidney disease treat with recommended drug classes Creatinine, HDL, Laboratory tests Laboratory tests Blood pressure LDL, microalbumin, performed+ performed+ and total cholesterol if systolic BP ≥140 mmHg or diastolic BP ≥90 mmHg With HTN and Coding on claims Problem list, diabetes or renal blood pressure disease, treat to <130/80 mmHg *For adults Note: EMR would likely also include information on medications prescribed and laboratory tests performed, but not necessarily test results or what was dispensed. ACEI = Ace Inhibitor. ARB = Angiotensin Receptor Blocker. BB = Beta Blocker. CCB = Calcium Channel Blocker. AldoANT = Aldosterone Antagonist. Using Computerized Registries in Chronic Disease Care | 27 performance and outcome measures recommend- ■ Correctly matching data to a specific ed by the ADA/NCQA for the Diabetes Quality patient is also difficult because unique Improvement Project18 (www.ncqa.org/DPRP/). patient identification numbers do not exist. Most data sources (e.g., laboratory and For some disease management guidelines, critical pharmacy systems) use patient identifica- patient information includes vital signs and other tion numbers that can not be tracked out- observations recorded electronically only in an side of the sponsor organization and/or are EMR. Table 5 lists selected guidelines for hyper- internally inconsistent. Error rates in the tension management from the Joint National electronic matching process can be sub- Committee on Prevention, Detection, stantial and significant manual matching Evaluation, and Treatment of High Blood is required to ensure data integrity. Pressure.19 This type of information almost always has to be entered manually into a disease registry. Ultimately, the possibilities for feeding electronic data into a registry depend upon local systems, technical features of feeder systems and the reg- Automating Data Entry into a istry application, the availability of necessary Disease Registry technical skills to develop and manage interfaces Because manual data entry into the registry between systems, and, in many cases, the willing- places a burden on local practices and care teams, ness of other organizations—such as a local hos- electronic sources of patient information are pital or commercial laboratory—to collaborate in highly desirable. However, several factors make the effort. Automation is more feasible in larger downloading electronic information from exter- organizations that operate clinical laboratories nal systems and integrating it into a disease reg- and/or have resident IT specialists than in the istry difficult: typical, small primary care practice. In smaller ■ There are currently no processes or proce- practices with electronic data feeds to the registry dures that enable provider organizations, and without the resources of an IS staff, at least health plans, and laboratories to exchange one individual is required with enough technical data in a smooth, consistent, and efficient savvy to manage interfaces and uploading of way. Agreements about how and when data data files will be exchanged must be negotiated, and “Getting the cooperation of commercial even then data may not be delivered in a timely manner. laboratories to feed us electronic test ■ The lack of uniform standards for the for- results for our registry was surprisingly mat and coding of laboratory and pharmacy difficult, given that this is clearly the data significantly complicates the process of right thing to do. In the end, I appealed integrating the data from multiple systems. to local employers who fully supported the Either the provider organization must build an electronic interface that converts the vari- use of our registry as a tool to deliver bet- ous formats and coding schemes into one, ter patient outcomes.” or this conversion process must be done Dr. Jim Barr, medical director manually and on an ongoing basis. Central Jersey Physician Network 28 | CALIFORNIA HEALTHCARE FOUNDATION Identifying Patients to Track in mately needs to verify that each registry patient is the Disease Registry a current patient of the practice and actually has Identifying all of the patients with a chronic dis- the condition in question because coding for ease is itself a major task when physician prac- billing is imprecise and subject to error. tices first set up patient registries. Practice man- Two different approaches can be taken to popu- agement or claims systems can provide a list of lating the data fields in a registry: candidates based on ICD-9 coding for patient encounters as a starting point. Other external ■ Identify potential registry patients in systems can also provide initial lists of patients advance. Verify patient status and build the with the targeted conditions, as shown in Table 6. registry record based on information obtained at the patient’s first visit. “One value of the registry is that many ■ Identify potential registry patients in physicians don’t grasp the enormity of advance and pre-populate their records by their chronic disease population.” pulling information from medical records or Evan Steffens, R.N., M.S., quality manager downloading information from electronic Primary Care Networks feeds. Verify patient’s status and update rele- Premier Health Partners vant information at the patient’s first visit. Searching claims or practice management systems The second option speeds up the availability of for patients with two encounters with the target registry support to patient care. However, both diagnosis in the past year helps to narrow down require personnel resources in scarce supply in the search from a claims or practice management most physician practices. system. However, the physician or care team ulti- Table 6. Data Available in External Systems for Use in Identifying Patient Candidates for a Disease Registry Data from an External System Claims/Practice Pharmacy/ Laboratory EMR/ Management Medication Claims Manual Entry ICD-9 code(s) Prescription for Results of indicator Problem list medication typically used laboratory test (e.g., documented vital signs to manage condition HbA1c for diabetes) (e.g., blood pressure) (e.g., insulin or oral hypoglycemic for diabetes, inhaled corticosteroids for asthma, specified antihypertensive medications for hypertension) Using Computerized Registries in Chronic Disease Care | 29 Ensuring Data Quality The most common approach to correcting data is for care team members to submit updates via “Inaccurate patient rosters and wrong telephone or fax to a central registry manager or data will kill a registry in no time, and to enter data locally into a patient status or data we think coding is the greatest source of field in the patient’s record. When electronic data are used, daily feeds are important to keep- error. So we involve the physician prac- ing laboratory results, in particular, up to date. In tices in keeping both correct.” registries that are integrated into larger clinical Wells Shoemaker, M.D. systems, real-time updates are possible. Whenever Physician’s Medical Group of Santa Cruz data from an external system are employed, Patient information in registries must be up-to- patient matching algorithms need to ensure that date and complete if physicians and other mem- the information ends up in the right patient bers of the care team are to rely upon the data. record in the registry. Patient matching is easier A clean patient list is essential for both outreach with internal systems such as practice manage- and feedback reporting. Patients move, change ment software that is locally managed than with primary care physicians, or die, and others do commercial laboratories. Commercial labs may not wish to receive reminders about their care. carry only a minimal set of patient-identifying Unless the records for these patients are changed information in each result report and manual to an inactive status, the care team stands to entry of patient-identifying information in the waste time (and possibly annoy patients and fam- laboratory can be a source of additional errors. ilies) in outreach, and registry population reports present an inaccurate picture of the actual patient Implementation population. Regardless of whether manual data, electronic feeds, or a combination are used in “Just grafting a registry onto the clinic the registry, careful attention must be paid to doesn’t work. You have to change how data quality. work flows and care is delivered.” In order to ensure data quality, organizations set Sean Gaskie, M.D., Family Practice Center up specific processes for managing the informa- Sutter Medical Center of Santa Rosa tion and reviewing the data from electronic Once the physician practice or medical group has sources. In some practices, a nurse or medical decided to use a disease registry and has selected assistant reviews the registry visit planner before the application, attention turns to the tasks of each patient visit, noting information updates implementation. Using a registry requires from recent laboratory tests or consult reports rethinking how care teams prepare for and con- available in the medical record. Ancillary duct patient visits; it also requires the creation of providers also query the patient for updates as new processes for following up with patients and they take vital signs and provide other pre-visit producing and distributing feedback reports. services. Some registry software applications pro- Change is always difficult, especially in an vide lists of patients with missing data. Care team extremely busy work environment like the pri- meetings to strategize about patient outreach also mary care practice or community health center. provide a natural opportunity to identify and Decisions about new roles and new processes address information gaps. Ultimately, the care must be group decisions because every physician team is responsible for the accuracy of informa- needs to support the new approach to sustain tion on every registry patient. the change. 30 | CALIFORNIA HEALTHCARE FOUNDATION In organizations of all sizes, someone with influ- ence must be designated to oversee the registry and its use. Often a lead physician or chief med- ical officer wears this hat, assisted in larger organ- izations by a small staff of nurse facilitators. Non- physicians are key participants, because recep- tionists and every member of the care team plays a role, often a bigger role than the physicians. Both at Thedacare and Bellin Medical Group, a nurse or administrator in each practice has time dedicated each week to run registry patient lists and work with care teams on outreach. Many physician practices obtain information about the practical aspects of rethinking their care model for chronic disease and integrating the registry into work flow through conferences or working with other organizations in a chronic disease collaborative. Groups such as the Bureau of Primary Health Care, MacColl Institute of Healthcare Innovation at Group Health of Puget Sound, and local and regional quality improve- ment organizations offer programs that focus on chronic care. Community health centers can par- ticipate in programs sponsored by the Bureau of Primary Health Care, HRSA. Physician practices in California now also have access to programs to help them prepare for the Integrated Healthcare Association’s Pay-for-Performance program [www.iha.org]. “The DCQI process infused us with fresh energy in 2001 with access to encourag- ing, smart people, and an expanded sense of the possible.” Wells Shoemaker, M.D., medical director Physicians Medical Group of Santa Cruz The Bureau of Primary Health Care offers one training manual on the general topic of chronic care and three others on asthma, depression, and diabetes management (www.healthdisparities.net/ training_manuals_and_tools.html). Another man- ual on cardiovascular disease is in preparation. Using Computerized Registries in Chronic Disease Care | 31 Appendix A: Interviewees from Provider Organizations Bellin Medical Group Intermountain Health Care Green Bay, WI Salt Lake City, UT Randi Burnham Dale Hale Team Leader Senior Outcome Analyst, Primary Care Clinical Services IHC Institute for Health Care Delivery and Research Cambridge Health Alliance Cambridge, MA Ilene Tippets Program Development/Implementation Irina Gruben Facilitator Quality Data Analyst II Primary Care Clinical Program Astrid Lambert Quality Systems Manager Luther Midelfort Westcentral Wisconsin Kristin Wagner Dennis Pope Clinical Nurse Specialist, Mental Health Vice President, Administration Dr. Hilary Worthen Director, Clinical Informatics Peace Health Alaska, Washington, and Oregon Central Jersey Physician Network John Haughom, M.D. Central New Jersey Senior Vice President, Health Care Improvement Dr. Jim Barr Sherry Catlin, D.O. Medical Director Medical Director, Florence Clinic Deer Lakes Medical Association Pittsburgh, PA Physicians Medical Group, Santa Cruz Dr. Joel Diamond Santa Cruz, CA Medical Director Dr. Wells Shoemaker Medical Director Family Practice Center Sutter Medical Center, Santa Rosa Prairie Community Health Santa Rosa, CA Isabel, SD Dr. Sean Gaskie David Rollason, P.A.-C. Director of Special Programs Primary Care Networks, Premier Health Greenfield Health System Partners Portland, OR Dayton, OH Dr. Charles M. Kilo Evan Steffens, R.N., M.S. Internist Quality Manager Ideal Health of Brighton Quello Clinic Rochester, NY Minneapolis-St. Paul, Minnesota Dr. Gordon Moore Terry Murray, M.Ed. Internist Guidelines Manager 32 | CALIFORNIA HEALTHCARE FOUNDATION Redwood Community Health Coalition Sonoma, Napa, Yolo, and Marine Counties Northern California Adrianne Bowes, R.N., C.P.H.Q. Director of QI Programs Cathy Frey Health Policy and Resource Director Anthony Stever Chief Information Officer Thedacare Northeast Wisconsin Sherry Clarke, R.N. Clinical Quality Consultant Disease Management and Prevention Thedacare Physician Services Using Computerized Registries in Chronic Disease Care | 33 Appendix B: Profiles of Organizations Using Patient Registries Use Organization* Registry Software Data Sources Patient Conditions Point of Care Outreach Program Tracked Monitoring Bellin Medical Homegrown Manual entry Diabetes Group, Hosted on network Electronic: HIS, Coronary artery northeastern WI server Health plan claims disease ✔ ✔ —18 clinics Accessed over Hypertension intranet Preventive services Cambridge Homegrown Manual entry Adult diabetes,++ Health Alliance, pediatric asthma++ Cambridge, MA Hosted on network Electronic: HIS —12 primary care server Depression++ clinics Accessed over ✔ ✔ ✔ intranet (clinics) or via dial-in (school nurses) Central Jersey PatientPlanner™ Manual entry Diabetes, asthma Physician from DocSite Electronic: Network (IPA) laboratories Hosted on central —16 practices server ✔ ✔ ✔ Accessed from practices over high-speed line Deer Lakes SMART™ Registry Manual entry; Asthma Medical (Health Dialog) health plan claims Association, Coronary artery from Highmark, Pittsburgh, PA— disease accessed via four practice sites CD-ROM Congestive heart failure ✔ ✔ Chronic obstructive pulmonary disease Diabetes Family Practice CVDEMS Manual entry Diabetes Center, Sutter Hosted on network Medical Center, Santa Rosa, CA— server ✔ ✔ ✔ resident-staffed Accessed over clinic intranet * Number of clinics/practices using disease registr y. + Not all practices/clinics use registry at point of care. ++ Separate registries. § EMR used at the point of care. 34 | CALIFORNIA HEALTHCARE FOUNDATION Appendix B: (continued) Use Organization* Registry Software Data Sources Patient Conditions Point of Care Outreach Program Tracked Monitoring Greenfield Homegrown Electronic: EMR Preventive care, Health, Portland, diabetes, Hosted on local PC OR—one clinic hypertension, § ✔ ✔ CAD/MI, hypothyroidism, osteoporosis Ideal Health of PatientPlanner™ Manual entry Diabetes, asthma Brighton, from DocSite Rochester NY— Hosted on local PC § ✔ ✔ solo internal medicine practice Intermountain Homegrown Manual entry Diabetes Health Care, Hosted on network Electronic: health Congestive heart UT— server plan claims, failure §✔ ✔ ✔ 500 physicians Accessed over Laboratory Asthma intranet in clinics manual entry Otitis Luther PatientPlanner™ Electronic: Diabetes Midelfort— from DocSite laboratory, practice west-central WI Congestive heart management Hosted on central failure —being rolled out server system Prevention ✔ ✔ ✔ Accessed from practices over high-speed lines Peace Health, Integrated into Electronic: EMR Diabetes health system in EMR (co-developed AL, WA, OR— with IDX) ✔ ✔ ✔ 200 employed physicians Physicians Homegrown Manual entry Diabetes Medical Group of Santa Cruz, CA Hosted on network Electronic: server laboratory —being rolled (Elysium), practice ✔ ✔ ✔ out Accessed via management Elysium clinical system, pharmacy messaging system claims Prairie PECS Manual entry Diabetes, asthma Community Hosted on network Health, Isabel, server at each site ✔ ✔ ✔ SD—two small rural clinics Accessed on network PC * Number of clinics/practices using disease registry. + Not all practices/clinics use registry at point of care. ++ Separate registries. § EMR used at the point of care. Using Computerized Registries in Chronic Disease Care | 35 Appendix B: (continued) Use Organization* Registry Software Data Sources Patient Conditions Point of Care Outreach Program Tracke Monitoring Primary Care PreCare, add-on Manual entry Preventive care, Networks of module to diabetes, Electronic: practice Premier Health Vitalworks practice management system hypertension, +✔ ✔ ✔ Partners— management system heart disease 36 primary care practices Hosted on network server Accessed over intranet Quello Clinic, Homegrown Manual entry Diabetes, Bloomington coronary artery Hosted on network Electronic: MN—six family practice clinics server laboratory disease, congestive heart failure, ✔ ✔ ✔ Accessed over hypertension intranet Redwood CVDEMS Manual entry Diabetes, Community prevention of Hosted locally on Health Coalition, diabetes and heart Santa Rosa, CA— PC at each site disease++ +✔ ✔ ✔ 12 community Some clinics have health centers local network Thedacare, Homegrown Manual entry Diabetes, coronary northeast WI, artery disease, Hosted in corporate Electronic: claims, 21 primary care practices IS laboratory Prevention ✔ ✔ ✔ Accessed in prac- tices over intranet * Number of clinics/practices using disease registr y. + Not all practices/clinics use registry at point of care. ++ Separate registries. § EMR used at the point of care. 36 | CALIFORNIA HEALTHCARE FOUNDATION Appendix D: Glossary Chronic care model—A systematic approach to Networked server—A server in a network that managing health care for patients with chronic hosts data and applications for multiple users. disease. Developed at Group Health of Puget Sound, the model includes community, health, Patient report—A disease registry report that and delivery system; clinical decision and presents a snapshot of condition-specific infor- patient self-management support; and clinical mation about a patient. Paper copies are used information systems. For more information, by the physician and other members of the care access www.improvingchroniccare.org. team during patient visits and often are used to document information updates to be entered Computerized disease registry—A computer into the registry application. Some registries application for capturing, managing, and pro- incorporate prompts about recommended inter- viding access to condition-specific information ventions that are due or allow for general care for a list of patients to support organized care recommendations. May also be called a visit management. planner. Disease registry—A paper-based or computer- Population management —Also called popula- ized approach to identifying and tracking tion-based management, this approach reorgan- information about patients with one or more izes clinical practice and care delivery to deliver chronic diseases. Disease registries manage a effective care interventions systematically to focused set of information relating to the maximize the health outcomes of a defined chronic condition(s) of interest. population. Clinical roles and care delivery are reorganized to be more planned and proactive. Electronic medical record (EMR )—A comput- er application for capturing, managing, and Stand-alone disease registry—A separate com- providing access to some or all of the informa- puter application from an electronic medical tion maintained in paper medical records. record. Disease registries may also be integrated into the software for an electronic medical Exception/outreach report—Patient list gener- record. ated by a computerized disease registry listing patients with care deficiencies according to the Technology hosting—Maintaining computer disease management guideline in use (e.g., system data and running the software applica- overdue for a recommended test or examina- tions at a third-party site. tion, not at recommended management goal). Disease registries typically include standard Visit planner—A disease registry report pre- pre-designed exception reports, as well as permit senting a snapshot of condition-specific infor- users to request reports for any date range and mation about a patient. Paper copies are used care deficiency of interest. by the physician and other members of the care team during patient visits and often used to Intranet—An in-house Web site that serves the document information updates to be entered employees of the enterprise. Although intranet into the registry application. Some registries pages may link to the Internet, an intranet is incorporate prompts about recommended not a site accessed by the general public. interventions that are due or allow for general care recommendations. May also be called a patient report. 46 | CALIFORNIA HEALTHCARE FOUNDATION Endnotes 1. O’Dell, G. “2002 AHA Environmental Reminders,” Second Annual Nicholas E. Assessment,” Hospitals & Health Networks, Davies CPR Recognition Symposium, 77(10): centerfold, 2003. Computer-based Patient Record Institute, 2. Institute of Medicine. “Priority Areas for Bethesda, MD, 1996. (available from National Action. Transforming Health Care www.himss.org) Quality,” National Academy Press, 11. Perreault L. and J. Metzger, “A Pragmatic Washington, D.C., 2003. Framework for Understanding Clinical 3. McGlynn, E. et al. “The Quality of Health Decision-support,” Journal of Healthcare Care Delivered to Adults in the United Information Management, Vol. 13, No. 2, States,” New England Journal of Medicine, Summer 1999. 348;26, 2635-2645, June 26, 2003. 12. Metzger, J. and K. MacDonald, Clinical 4. Wagner, E. et al. “Improving Chronic Illness Decision Support for the Independent Physician Care: Translating Evidence into Action,” Practice, prepared for California HealthCare Health Affairs, (Millwood), 2001;20:64-78. Foundation by First Consulting Group, October 2002. 5. Bodenheimer, T. et al. “Improving Primary Care for Patients with Chronic Illness: The 13. Wagner, E. et al, “Improving Outcomes in Chronic Care Model, Part 2,” Journal of the Chronic Illness,” Managed Care Quarterly American Medical Association, 288(15):1909- 4(2):12-25, Spring 1996. 1914, October 16, 2002. 14. Versal, N., “Wave of the (Not So-Distant) 6. Institute of Medicine. “Crossing the Quality Future,” Modern Physician, 12-20, November Chasm,” National Academy Press, 2002. Washington, D.C., 2001. 15. Chronic Disease Registries: A Product Review, 7. Casolino, L. et al. “External Incentives, California HealthCare Foundation. Information Technology, and Organized 16. HIMSS/AstraZeneca Clinical Wireless Processes to Improve Health Care Quality for Survey, 2002. (www.himss.org) Patient with Chronic Diseases,” Journal of the 17. Integrated Healthcare Association, IHA American Medical Association, 289(4): 434- Projects, “Pay for Performance,” 2003, 441, January 22/29, 2003. (www.iha.org/Ihaproj.htm) 8. Rundall, T. “As Good As It Gets? Chronic 18. ADA/NCQA Diabetes Physician Care Management in Nine Leading U.S. Recognition Program, “Diabetes Quality Physician Organisations,” British Medical Improvement Project Initial Measure Set Journal, Vol. 325, 958-960, October 26, (Final Version), 2003, (www.ncqa.org/ 2002. DPRP/dqip2.htm) 9. Wagner, E., “A Survey of Leading Chronic 19. Chobanian, A., “The Seventh Report of the Disease Management Programs: Are they Joint National Committee on Prevention, Consistent with the Literature?” Managed Detection, Evaluation, and Treatment of Care Quarterly, 7(3):60-70, 1999. High Blood Pressure, U.S. Department of 10. Bakke, K., “The Clinically Related Health and Human Services, National Heart Information System (CRIS): A CPR Pilot Lung, and Blood Institute, May 2003, Using Primary Care Advice Rules and (www.nhlbi.nih.gov) Using Computerized Registries in Chronic Disease Care | 47