Registries Missing Link New v1 1

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The Missing Link Between Researchers and Clinicians
WHITE PAPER PROVIDED BY: Remedy Informatics®, Inc.

Choosing the right registry solves the one-size-fits-all problem and enables a 360-degree view of disease-specific data. A modern, robust registry will ensure that clinicians and researchers are able to appropriately focus on what they care about—new discoveries and ultimately better healthcare. This paper explores the reasons why enlightened researchers and clinicians are flocking


to build registries and why this is such a significant breakthrough for the health care community.
Long before personalized health care or evidence-based medicine become popular, doctors were using their experience, education, and their intuitions to stratify patients into multiple groups based on a combination of characteristics and then treat each patient in a different way depending on their characteristics. In many cases, a doctor’s ability to differentiate treatment was limited by the number of different characteristics they could keep in their head at any one time. Of course, the proliferation of new data sources makes it even more difficult to keep track of all this information manually. So, what exactly is a registry? According to Wikipedia, “Registries are databases that collect clinical data on patients with a specific disease (diabetes, asthma, CHF, hypertension, etc.) or keep track of specific medical tests (Pap smear, mammogram).1 For the purposes of this essay, There are many types of registries such as disease registries, patient registries, clinical registries, and so on. In its most simple form, a registry could consist of a collection of paper cards kept inside “a shoe box” by an individual physician. Registries vary in sophistication from simple spreadsheets that can only be accessed by a small group of physicians to very complex databases that are accessed online across multiple institutions. Because most researchers use spreadsheets and homegrown databases, they are forced to use whatever data sets might be available. Typically, one-size-fits-all data sets are not specific to their research and, as a result, users are not able to search and report with we define registries as the combination of data, tools, and applications that enable researchers, physicians, and scientists to collect, store, analyze, and repurpose medical data. | (801) 733-3300 | [email protected]

sufficient specificity to identify trends and patterns in their search for novel conclusions. Choosing a robust registry solves the one-size-fits-all problem and enables a 360-degree view of disease-specific data. The ideal registry will ensure that clinicians and researchers are able to appropriately focus on what they care about—new discoveries and ultimately better health care. Clinicians and researchers have begun to implement registries to help recognize patterns in research and improve outcomes. Registries can be used in conjunction with data from an existing Electronic Health Records system or can be used as a stand-alone system for improving outcomes. What kind of impact are disease registries having on the organizations that use them? According to HIN, improved performance reporting was the number one impact reported by survey respondents (68.8 percent). Increased compliance in chronic care patients as well as improved patient outcomes were also impacted (54.2 percent and 43.8 percent, respectively).


The Value of Registries
Comprehensive Data Collection and Aggregation Now that the information necessary to recognize patterns is being collected electronically, the time has come to aggregate all this data into a meaningful repository that enables researchers and clinicians to become significantly more effective. Putting all this data together in one place and making it accessible to medical professionals was the grand promise of electronic medical records systems. However, institutions that have already implemented EMRs find that all the data they need is still not available. This fact is not necessarily a shortcoming of EMR applications, but rather of case of “incorrect expectations”. EMRs were never designed for optimal flexibility, nor were they designed to aggregate all data of any type in a single system. They were designed as transactional systems specifically focused on optimized billing and managing individual care rather than tracking cohorts of patients. If electronic medical records represent the most inflexible and structured data collection methodologies, then Excel® spreadsheets are at the other end of the flexibility spectrum. They are infinitely flexible. If one wants to collect a new data element it is as easy as adding the element to a cell and then entering data. However, this simple and inexpensive approach to collecting data does nothing for a researcher who needs a database management system to query and report on data. Nor can a researcher use a spreadsheet to link data from an EMR, a biospecimen management system, a molecular data module, and an imaging application. | (801) 733-3300 | [email protected]

In order to address the shortcomings of spreadsheets and the inflexibility of EMR applications, most institutions are moving toward a computing model that places a registry at the center of all their data capture and aggregation activities as shown below:


In this example a registry collects and aggregates secondary data from a wide variety of disparate sources and then slices that data in whichever way is most applicable to the consumer of the data. A registry like this enables a 360º view of each patient or research subject. It enables a clinician or researchers to measure outcomes, detect patterns, collect and submit comparative effectiveness research (CER) data, and track clinical performance guidelines. This registry captures a wide variety of demographic, clinical, and genetic data via disease-specific electronic data capture forms. Ideally a registry like this one would be Web-based in order to provide collaboration across enterprises and locations and to eliminate the need for onsite system installation and maintenance. | (801) 733-3300 | [email protected]

Registries collect standardized data sets but they are also highly flexible so researchers and clinicians can capture, view, analyze, and report on the specific information that they want quickly—without requiring their IT department’s assistance. Additionally, registries enable integration with all sources and types of data that are, or might, be relevant to a researcher. Harmonizing Data from Disparate Sources Collecting data from multiple sources and then using that data to recognize patterns has been important to doctors since they first began to practice medicine. As time has progressed, more sources of data have become available for inclusion in the analysis. This is one of the major benefits of the information age. However, as more data is available to medical professionals, the complexity of harmonizing that data increases as well. The only practical and definitive way to harmonize data from all these sources is via an ontology. When analyzing data from many sources such as an old patient registry, a hospital EMR, a practice management system, and a biospecimen management application, it is essential that the data elements are accurately mapped and linked together in the correct way. Clinicians and researchers must be able to easily make sense of complex and disparate data sets, derive new knowledge, and draw new inferences from the depth of information available. When analyzing large amounts of data from multiple sources, it is essential to employ an ontology that guarantees consistency from one source to another. Since the data being analyzed in medicine are so expensive, and in some cases life sensitive, it is essential that all data be aggregated accurately. One example of why it is important to harmonize data comes from a study conducted at Children’s Hospital of Philadelphia. In one 24-hour period 465 children were admitted to the hospital with fever. Their fever-like symptoms were recorded in the EMR in 278 ways.2 This diversity occurred in a single EMR application so it is reasonable to assume that the terminological disparity would be even greater if one were trying to conduct research using many disparate source systems.

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Over the past five years most researchers and many clinicians have recognized the necessity of using registries to gain a 360º view of their patients or subjects. However, not all registries offer the same functionality. Those who have tried to build a robust system with a “toy” registry have wasted far more time and money than they have saved and are still left with


less functionality than they need. Customization All clinicians and researchers have slightly different content collection needs, and data elements always evolve over time. Disease registries enable clinicians and researchers to customize data collection fields and forms in a personalized, yet structured and meaningful way. Structures include data format types (e.g., checkboxes, drop down lists, and radio buttons) and standard terminologies (e.g., ICD-9, SNOMED, and CPT). The structured data collection ensures that the new or edited content is immediately available for reporting. In order for registries to be useful,

customizations must be made in ways that automatically change the structure of the database otherwise the data could be collectable but not reportable. Robust disease registries include customized data elements that often number over 1,000. | (801) 733-3300 | [email protected]

Robust reporting for non-technical staff Reporting is a key requirement for disease-focused clinicians and researchers whether it is to report on patient outcomes, report to regulatory or certification bodies such as PQRI, manage JCAHO, and other federally mandated programs or measure internal institutional or departmental metrics. The challenge is that highly trained individuals who undestand ontologies, data models, and other technical criteria are required for reporting and data analysis. A major problem for clinicians and researchers is that they have a great quantity of data to analyze but do not have the tools or skills to understand it. Real registries provide easy-to-use reporting tools that enable end-users to answer complex questions without knowing the underlying data structure or the location of the data. For example, a real registry offers graphical and visualization tools that represent data in an intuitive way so that non-technical users can conduct research on their own instead of relying upon internal IT services. A real registry helps address a broad range of clinical reporting needs, including building patient cohorts, finding patterns between treatment protocols and patient outcomes, and segmentation of patient populations using genetic data.


New quality indicators that are part of many ARRA funding grants are a good example of the kind of reporting available from a registry.
Flexibility to accommodate adaptive studies One of the most vexing problems facing physicians and researchers is that they can never define all the characteristics that might be of interest in the future. In fact, most physician researchers have faced the unpleasant experience of realizing that they have collected years worth of data that have been rendered irrelevant due to their failure to collect a few data elements that did not seem relevant at the time. A version of the same problem manifests itself when a researcher has gone to great lengths to collect the relevant data for his study but then realizes that the same data could be adapted for a different study if he were able to collect a few new fields that were unrelated to the first study. For example, suppose an endocrinologist was interested in tracking the HgA1C levels in their patients. The specific question regards the circumstances under which their patients are able to stabilize or even reduce their A1C levels. The researcher has built a large database with thousands of patients. The research project has tracked such factors as food intake, exercise levels, sleep habits, and several hundred | (801) 733-3300 | [email protected]

additional data elements. If the endocrinology group wishes to collaborate with several bariatric surgery groups to determine if there is any relationship between gastric bypass and reductions in A1C levels, then the data they have collected would not complete. In this example, the patients’ weights were tracked but the relevant question in the new study is whether some types of weightloss surgery are more effective at reducing A1C levels than other types. Using the existing data and simply adding a few fields would allow a research group to repurpose their existing data at a relatively low cost. However, the scenario described here is almost never possible in today’s research environment.


Data visualization tools via dashboards It can be difficult for researchers and clinicians to understand outcomes and other aspects of care without visualizing the information. Real registries provide data visualization via dashboards that yield a deep and real understanding of data and analysis; this is especially valuable for end-users that are not trained statisticians. Dashboards provide tools that clinicians and researchers use to represent and visualize data graphically in real-time. Dashboards facilitate decision-support across all levels of outcomes management. A robust data visualization system provides dashboards for different types of needs, diseases, populations, departments, risk-levels, adverse events, patients, and more. Data visualization also allows end-users to personalize their data visualization dashboards to their clinical reporting environment. This personalization enables efficiency and relevancy, leading to improved and faster decision making for high-risk patients. Interoperability A real registry is interoperable with the clinicians’ and researchers’ existing data collection systems and methods. Many clinicians and researchers have started to use registries to enhance the value of their existing electronic medical records system. While the electronic health record is used to collect initial demographic and visit-specific information, the registry enables researchers to collect standardized and structured information specific to the patient’s disease(s) that would not typically be found in an EHR. I.e., genetic data, biospecimen data, patient-provided longitudinal data, and disease-specific data. Using a registry with interoperability services such as exports, imports, and interfaces ensure no time-wasting double data entry. | (801) 733-3300 | [email protected]

Offering disease registries built upon the same platform facilitates cross-specialty interoperability that has proven to be a very difficult challenge facing hospitals and clinics.

Registries in Action
Remedy Informatics4 has explicit experience and domain knowledge creating complex registries for clinicians and medical researchers. Remedy Informatics’s registries integrate institution-wide data and provide the tools that physicians and researchers need to collect data to measure outcomes, provide more effective multi-disciplinary care, and enhance research initiatives.


A children’s hospital in the Midwest utilizes Remedy Informatics for pediatric registries. These registries are critical in helping their pediatric researchers and care providers determine the best methods to improve health outcomes for children. | (801) 733-3300 | [email protected]

According to this children’s hospital outcomes research department, in addition to data collection for the purposes of research and patient care, there is increasing pressure by payers, governmental agencies, businesses, the public, and patients for reporting health care outcomes. The children’s hospital chose Remedy Informatics’ pediatric registries as their proactive approach to data collection. The hospital tracks outcomes for diseases such as scoliosis, diabetes, neonatal surgery, cleft palate, urology, and more. Registries enable the children’s hospital to track any metrics that they choose. For information about how Remedy Informatics can help your institution develop a highly customized registry in a fraction of the time and for a fraction of the cost of inhouse development, speak with one of our consultants today for a free, no obligation consultation by calling (801) 733-3300 or emailing [email protected]


Sources: 1 Wikipedia. Available at, Accessed March 31, 20093 2 Advancing Rare Disease Research: The Intersection of Patient Registries, Biospecimen Repositories and Clinical Data, Plenary Session B, Christopher B. Forrest, Mary D. Ames, Professor of Pediatrics, Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine 3 Health Information Network; “Patient Registries: The Track to Better Quality Healthcare.” Available at, Accessed March 31, 20092 4 Remedy Informatics; Available at Accessed February 18, 2009 | (801) 733-3300 | [email protected]

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