In 2007, a group of Canadian cardiologists found themselves in a unique position. New – and expensive – implantable cardiac defibrillators were being used by fewer than a dozen doctors. And the Institute for Clinical Evaluative Sciences was offering to help them create a registry that would track outcomes for five years. Soon, they had the largest registry of the devices in the world – and a crucial database of information that picked up where the clinical trials had left off. “It gave us a real-world look at how defibrillators were being used,” says Chris Simpson, chief of cardiology at Queen’s University.

The five-year long project, led by ICES’s Douglas Lee, became the largest registry of implantable cardioverter defibrillators in the world. Researchers who pored over these data found that patients in their 80s, who were often not enrolled in clinical trials, benefited just as much from the implants as younger ones did. “That changed clinical practice around the world,” says Simpson.

It also shows the benefits registries can offer. “The real-world look at outcomes has a lot of unique value over and above the typical randomized controlled trial,” says Simpson. “[Real world] patients aren’t always the perfect patients that are in clinical trials; the way the product is deployed [can be] quite different. Registries can detect that difference.”

Swedes would agree: they’ve long believed in the unique value of information from registries. Since the success of the country’s first health registry about 40 years ago, they’ve developed about 100 for everything from heart surgery to cataracts. These gather detailed information that’s used by clinicians, researchers, policy makers and the public. There’s widespread belief that the registries are crucial to the success of the health-care system.

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Sweden’s national system

Sweden’s first registry, which started in 1975, covered knee arthroplasty. It was driven, as many of their registries are, by a professional organization, the Swedish Orthopedic Society. Its success inspired the growth of other similar initiatives, and their use to help lower costs and improve outcomes.

“It started with hips and knees, but now they administer their health care system almost by registries,” says Robert Bourne, professor of surgery at Western Ontario and past chair of the Canadian Joint Replacement Registry. “The government is trying to make informed decisions about the standard of care in a whole spectrum of disorders.”

The registries are funded primarily by the government, who were projected to spend about $45 million a year on them in 2013. They collect information about the patient, the type of care that was provided and the results. The data are entered by clerks at the hospital, and are also collected from patients. In the hip registry, for example, patients complete questionnaires at regular intervals for a decade after their operation.

This information has led to significant discoveries. The most well-known success is the hip registry, which started in 1979. Sweden has the lowest failure rates in the world for hip replacements. That’s because the registry has helped them identify the implants that work the best. Unlike in other countries, in Sweden only six types of implants make up almost all hip replacements. Twenty years ago, more than 50 were used.

More recently, the large database of information in the cataract registry allowed for research on a rare condition, postoperative endophthalmitis. The registry began including information on the condition in 1997, which was used to identify risk factors and best practices around it. Since then, Sweden’s rate of endophthalmitis after surgery has declined from 0.1% to 0.04%.

The registries have good support among clinicians. In a 2010 survey of health registry contacts at hospitals, more than 89% of respondents agreed that the registry helped their organizations identify areas to improve. Ninety-three percent of physicians and 99% of nurses who responded also agreed that the registry helped improve the quality of health care.

That’s one reason why many registries encompass 80% or even close to 100% of target populations. “[Those numbers are] a sign many hospital departments and primary care centers find it meaningful to participate,” says Charlotta Levay, associate professor at Sweden’s Lund University. It also means the information is more reliable.

Letting the public in

In the mid-2000s, Sweden began releasing performance reports to the public based on information from the registries. The move was initially unpopular among those managing the registries, who were worried difficult cases would skew the results. But it appears to have had positive effects.

Swedeheart, the acute coronary care registry, began releasing data in 2006 about how closely hospitals followed clinical guidelines and what their patient survival rates were. The hospitals’ quality index scores rose dramatically after that – by about 13% a year.

Some would like to see Canadian registries provide the public with that kind of information as well. “If you go to buy a car, you can make a really informed decision,” says orthopedic surgeon Eric Bohm. “You can’t really do that when you have your hip or knee replacement done. That’s something we’re thinking about – how we make that information available to people in a usable format.”

Canada’s disjointed registries

Canada also contributes to the global pool of information registries provide, along with countries such as Australia, England, Denmark and the U.S. In 2001, the Canadian Joint Replacement Registry was created. Developed by the Canadian Institute for Health Information and orthopedic surgeons, it covers 74% of the 100,000 procedures done annually across the country and has been used in various studies.

“[The registry allows us to] look at what’s being done to patients, what the outcome is for them. To make sure that we’ve established best practices,” says Patricia Sidhom, who leads the registry for CIHI. Other registries, including a large cancer registry and a newly developed MS registry, also crisscross the country.

Alberta is exploring how it could make better use of its 100-some registries. It’s working on a portal project that would link the registries and provide up-to-date information in close to real time. But the province has come up against some of the same challenges as Sweden: registries require significant investment and substantial human resources. Alberta also faces technical barriers in creating the portal and creating a bulletproof system that would protect patient privacy.

“Alberta is really keen on the idea of creating Swedish-type registries that would be accessible to people for research, for innovation, for patient care and for policy purposes,” says Cy Frank, CEO of Alberta Innovates Health Solutions. The data from the registries could be used by the public for advocacy efforts, researchers to improve clinical care, or governments to help allocate resources. “I believe that high-quality data is required to make better decisions, as a fundamental principle, rather than people using anecdotes and individual cases,” says Frank.