1. When and where did clinical data registries start?
Some of the first clinical data registries began in Sweden in the 70s; the Swedish Knee Arthroplasty Registry began in 1975 and the Swedish Hip Arthroplasty Register began in 1979. Since then, Sweden has created dozens of registries that help improve patient outcomes. The United Kingdom and Australia followed suit, founding joint replacement registries in 2002 and 1999, respectively. American clinical data registries are not mandated by the government like their international counterparts, but they are becoming increasingly popular. America has learned a lot from the clinical data registries from around the world.
2. What is a clinical data registry?
Clinical data registries record information about the health status of patients and the heath care they receive over varying periods of time. They're designed to capture clinical data of importance to healthcare practitioners, providers and patients. Generally, registries focus on clinical data for specific populations based on a disease/condition, procedure, or medical device/drug. For example, the American Joint Replacement Registry focuses on hip and knee replacements in the United States.
3. Who manages registries?
Many different organizations and societies have created registries. These organizations include: medical specialty societies, health plans, patient advocacy organizations, federal and state governments, for-profit companies and non-profit organizations.
4. Who is interested in registries, and who can they benefit?
There are various groups of people that can benefit from the data housed within registries. The way they use it may differ, but their ultimate goal of improving patient care remains the same. These groups include: hospitals, health systems, private practice groups, physicians, health plans and other payers, patients, researchers, device management companies, patient and consumer organizations, and federal, state and local government.
5. How do registries collect data?
There are two main methods of data collection that registries utilize. One way that registries can pull data is from electronic health records or to have it manually submitted by a hospital. Registries are very careful with protected health information, and follow several steps to safeguard patient privacy. The other method comprises of data submitted directly from patients, or through devices that hold surveys that patients can fill out. These surveys answer questions that describe the patient experience before and after surgery, and are referred to as patient-reported outcomes. Not every registry offers both options, and there are different nuances depending on the specialty.
6. Why are registries important?
• Quality Improvement: Registries can be used for quality improvement initiatives. By comparing figures at participating institutions over a period of time, trends can be noticed and areas that should be focused on can be isolated.
• Value-based Payment Initiatives: Clinical Data Registries can also be used to meet value-based payment initiatives. The Centers for Medicare & Medicaid Services requires several initiatives, and registries provide the resources to help meet many of them secure incentive payments and avoid penalties.
• Support network: Since clinical data registries function as a way to improve patient care, many see the value in creating user groups for the surgeons and other healthcare employees that utilize them. These groups act as a network, unifying professionals across the state and country. Members share registry best practices, and are often given the opportunity to help shape the registry community through their insights and contributions.
• Performance reports: A feature that many registries possess is the ability to generate performance reports using the data from participating institutions. With all of the data that these institutions receive from their patients, it may be a difficult task to narrow down what they're specifically looking for. Performance reports can pinpoint a great deal of specific information, such as procedure count, patient-reported outcomes, medical device manufacturers and more.
• Benchmarking: Clinical registries also support benchmarking through comparing performance across different levels of attribution and geographic area, and the data is sometimes used by medical specialty and healthcare professional societies to create and monitor performance for quality improvement programs. The benchmarked information contained in registries can help institutions visualize how they stack up against other de-identified participants in a registry, and individual hospitals or entire health systems have opportunities to compare their performance to national demographics.
• Security: Clinical data registries apply industry-wide best security practices when it comes to the integrity and safeguarding of their sensitive information. Participating institutions can be confident in knowing that registries have employed internal risk management practices to ensure the confidentiality, integrity, and availability of data. Many registries are HIPAA compliant, and collect protected health information under HIPAA Privacy and Security rules. Also, in the case of medical device recalls, registries are able to issue warnings to participating institutions. Patient safety is of the utmost importance.
• Research: Research is another valuable way that registries can be used. Registry research can lead to medical discoveries and reveal successful surgical techniques.
7. What are some examples of national registries?
American registries expand over countless specialties and fields. Some of the most prominent are the AJRR, Intelligent Research in Sight Registry, and National Cardiovascular Data Registry. Groups like the National Quality Registry Network, created by the American Medical Association in 2011, are voluntary networks of registry stewards and other stakeholders interested in advancing the development and use of registries to evaluate and improve patient outcomes. The AMA leads evaluations of registries on behalf of the NQRN regarding the operations and sustainability of existing registries, and other useful projects.
If your institution performs hip and knee arthroplasty procedures, the AJRR is a great registry to consider. For more information, visit www.ajrr.net or call 847-292-0530.