Health Care Registries: Powerful Tool, Narcoleptic Name

flying cadeuciiDon’t let the name fool you—registries are important. Here are three powerful functions they can enable:

1). Collect data on real-world patient outcomes.
2). Create a feedback mechanism for health care providers—how well are patients faring under treatment?
3).Facilitate changes in care, and improvements in outcomes, based on that feedback.

Imagine this: You’re feeling sick and decide to go see the doctor. You receive a treatment, and in short order, you’re feeling much better. You’re a walking testimonial to the effectiveness of that treatment.

But where is this outcome recorded? Your doctor follows up and is aware that the treatment worked for you. But this is not a clinical trial, and these outcomes are not being systematically observed. So your experience becomes an anecdote—not a data point—which is to say, it doesn’t count. This is where registries come in.

Registries collect observational data—the real-world outcomes and experiences of patients who have received medical care. This world is often contrasted with the ideal-world of clinical trials. In randomized controlled trials—the gold standard of research—complex patients, such as older adults and people with multiple medical conditions, are often excluded from studies. This can make the research findings more rigorous, but less relevant.

Registries often include patients who cannot participate in randomized controlled trials. This is important because information on the effectiveness of treatments is needed for these patients as well. “The only patients sitting in a spine surgeon’s office are ones that had to be excluded from trials,” one observer at a recent conference noted. This provides a repository for cases that might otherwise be excluded from research study. “That is the power of a registry.”

The definitive guide to registries, “Registries for Evaluating Patient Outcomes,” first sponsored by the U.S. Agency for Healthcare Research and Quality (AHRQ) in 2007, states: “Registries are a valuable complement to randomized controlled trials in determining real-world outcomes in the practice of medicine”—in part because they have less restrictive exclusion criteria.

To highlight the capabilities of registries, the Kaiser Permanente Institute for Health Policy, AcademyHealth, and The Pew Charitable Trusts partnered to highlight some of the leading registries in the United States and abroad. In a series of portfolios, we profiled six clinical data registries, detailing their governance structures, data collection processes, analytic products, and end-users. These portfolios highlight the key benefits of data registries for policymakers and other decision makers.

• The first of the registries we profiled was Kaiser Permanente’s Total Joint Replacement Registry (TJRR), the largest orthopedic registry in the country. Using data from this registry as a feedback device, Kaiser Permanente orthopedic surgeons and data analysts uncovered numerous findings that have led to improvements in clinical practice. They found, for example, that certain implant devices are more effective and longer-lasting than others. They discovered that some patients are more highly disposed to surgical complications. They identified which surgical techniques are associated with the best outcomes.

Registry data from TJRR were analyzed to answer the following operational question: which substance works best in holding new joints in place—basic cement, hybrid cement, or an uncemented compound? The analysis found that joint replacements using the uncemented compound had substantially shorter lifespans, requiring the surgeons to “replace the replacement” more often through revision surgery. These findings altered purchasing decisions and surgical practice at Kaiser Permanente. Overall, the Total Joint Replacement Registry helped Kaiser Permanente reduce surgical revision burden (the number of revisions divided by all procedures) from 15.4 percent in 2002 to 10.1 percent in 2010.

• The second registry featured in this series was the Australian Orthopaedic Association (AOA) National Joint Replacement Registry (NJRR). This registry monitors the outcomes of joint replacement and has been effectively used to improve care quality for patients in Australia. NJRR has helped in producing cost savings, informing medical device offerings, and educating surgeons. The registry helped in reducing the number of revision surgeries in Australia from 13 percent in 2003 to 11.2 percent in 2010.

• The third registry featured was The Society for Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy (TVT) Registry, which monitors the safety, effectiveness, and real-world outcomes for TVT. The registry serves as a platform for device and procedural surveillance, quality assurance and improvement initiatives, and for studies on expanded indications of transcatheter aortic valve replacement, a new type of TVT.

• The fourth registry profiled by the project was the National Surgical Quality Improvement Program (NSQIP). Sponsored by the American College of Surgeons, NSQIP monitors a variety of data and outcomes across surgical specialties. These data are used to generate risk-adjusted performance assessments. NSQIP is used by member hospitals to measure and monitor surgical outcomes, improve patient care by reducing associated mortality and morbidity through prevention activities, and achieve cost savings, the majority of which comes from lowering the rate of complications.

• The fifth registry, Get with the Guidelines-Stroke is operated and managed by the American Heart Association and American Stroke Association. Created in 2003, the registry now has more than 1,600 hospitals participating. GWTG-Stroke is widely recognized for its performance in improving the implementation of evidence-based guidelines and facilitating quality improvement at several different levels (physician, hospital, and health system).

• Sixth, the Cystic Fibrosis Patient Registry, which originated in 1966, tracks the health and treatments of people of people with cystic fibrosis in the United States. The registry has evolved over the years to meet the changing evidence needs of patients, providers and other decision makers. It is operated and managed by the Cystic Fibrosis Foundation, whose mission is to support the development of new drugs to improve the quality of life for cystic fibrosis patients.

As AHRQ has observed (Chapter 22), “registries are powerful tools for understanding and improving quality of care.” They provide the structure to systematically collect patient outcomes, analyze and make observations from that data, give feedback to providers about how patients are faring under specific treatments, and stimulate improvements in care delivery that can result in better patient outcomes.

Registries expand the base of medical knowledge beyond clinical trials to track the real-world outcomes of everyday (non-randomized) sick people. This helps to inform the treatment of those who come after them.

Ben Wheatley is a senior health policy advisor with Kaiser Permanente.

3 replies »

  1. I am willing to participate (or not) in surveys, which I know seems quiant, but was for decades the way we collected data. And, if I am stricken with a serious illness, I might be willing to participate in a well-designed clinical trial.

    The definitions of terms you provided is very helpful.

  2. So, basically they’ll pry your data out of your cold, dead hands, Vik?

    That’s your right as a freedom loving American

    Can you clarify under what circumstances – if any – you are willing to permit the collection of health data?

    I was little unclear on the difference between a database, a databank, a data repository, and a registry, the various privacy implications thereof.

    Here’s a doc I found on the Stanford web site:


    The terms database, registry, data bank, repository, and tissue bank are often used
    imprecisely, and sometimes interchangeably. The following definitions are not universally accepted, but are provided solely to clarify usage in this information sheet.

    Database. A database is collection of information elements (i.e., data) arranged for ease and
    speed of search and retrieval. Most databases are now maintained electronically, but the term
    can also be applied to paper record systems.
    Examples of databases include the following:
    • A set of observations (i.e., data) resulting from a research study
    • An electronic file of a medical provider’s patients
    • A collection of diagnosis, treatment, and follow-up information for a hospital’s
    oncology patients
    • A file of outcomes information complied for quality assurance activities
    • A list of potential research subjects
    Page 1 of 17 Registry. A registry or “data bank” is a collection of information elements or databases
    whose organizers:
    • Receive information from multiple sources
    • Maintain the information over time
    • Control access to and use of the information by multiple individuals and/or for multiple
    purposes, which may evolve over time

    Registries often contain codes that link information and specimens to their donor’s identify.
    Examples of a few well-known registries and data banks include:
    • Centers for Disease Control & Prevention (CDC) State Cancer Registries
    • Familial Gastrointestinal Cancer Registry
    • National Registry of Myocardial Infarction (NRMI)
    • National Registry of Veterans with Amyotrophic Lateral Sclerosis
    • The National Library of Medicine Hazardous Substances Data Bank (HSDB)
    • The National Practitioner Data Bank
    • The US Census 2000 Data Bank
    Repository. A repository or “tissue bank” is a collection of biological specimens whose
    • Receive specimens from multiple sources
    • Maintain the specimens over time
    • Control access to and use of specimens by multiple individuals and/or for multiple
    purposes, which may evolve over time

    Repositories usually include demographic and/or medical information about the
    individuals from whom the specimens were obtained. Repositories often maintain codes that
    link the information and specimens to their donor’s identify. Examples of a few well-known
    repositories include:
    • The National Human Radiobiology Tissue Repository
    • The National Institute of General Medical Sciences (NIGMS) Human Genetic Cell
    • The National Institute on Aging Cell Repository
    • The National Marrow Donor Program (NMDP) Research and Outcomes Repositories
    • The National Surgical Adjuvant Breast & Bowel Project (NSABP) Data and Tissue
    Registries, data banks, and tissue banks are all considered “repositories” for regulatory
    purposes. Any reference in this guidance to repositories applies equally to data banks,
    tissue banks, and registries.

  3. “Imagine this: You’re feeling sick and decide to go see the doctor. You receive a treatment, and in short order, you’re feeling much better. You’re a walking testimonial to the effectiveness of that treatment…But where is this outcome recorded? Your doctor follows up and is aware that the treatment worked for you.”

    Imagine this same scenario, with this twist: I owe you nothing, other payment for services rendered. Absolutely nothing.

    Right here in St. Louis, my wife is being avidly pursued by the health system that own our physician’s practice to come in for her “life saving” screenings. In the last 10 days, we have had three live telephone calls, two robocalls, 1 voice message, and one letter. My message to her health system, Kaiser, and any other group of big data perps invading my and my family’s space. Don’t call us, we call you.