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Longtime stroke researcher Patrice Lindsay, Ph.D., has had a front-row seat to medical advances for treating the world’s No. 2 killer. And as a survivor, she knows firsthand how far patient care has come since her stroke in 2001.

Programs that track quality of care have improved treatment of stroke patients, Lindsay said. Such programs are based on evidence, some of which is collected from patient medical records provided by hospitals. The information is compiled into databases called patient registries.

“[A registry] helps us really understand if there’s issues around not following guidelines or not meeting the targets,” said Lindsay, a former nurse and the director of stroke at the Heart and Stroke Foundation of Canada. “Then we can really target quality improvement resources so we’re not feeling around in the dark for where we need to fix things.”

The databases are packed with real-world evidence for a particular condition or exposure that over time provides researchers with valuable insights into drugs that work, how diseases affect men versus women, and whether nurses and doctors are giving patients the right care, to name a few.

Yet many registry programs around the world don’t require doctors to get a patient’s consent to have their health data included in a registry, although some hospitals may have their own consent policies.

Stroke registries include details such as a patient’s age, gender, race and ethnicity, type of stroke and medications. Some also amass data on a person’s recovery over months. Patients’ names, addresses, birthdates and other personal identifiers are omitted when data is shared with scientists for research.

Considering that stroke has not been as heavily researched as heart disease, “the value of [the data] is indisputable,” said medical ethicist Arthur L. Caplan, Ph.D., a professor and head of medical ethics at NYU School of Medicine. “The real ethics issue is, what level of consent do you need?”

Caplan has studied medical ethics for almost four decades. He said some governments have come a long way in protecting patients’ rights and privacy in the more than 60 years since U.S. doctors used cancer cells from Henrietta Lacks for research without her knowledge. In the 1990s, for example, many hospitals began to require patient consent to remove tissue, Caplan said. And in 1996, Congress passed the federal patient privacy law known as HIPAA.

Under U.S. law, Caplan said, medical personnel don’t have to get consent to collect a patient’s data for research if they are treating the patient for an emergency and an independent ethics committee has said consent isn’t needed. That makes sense for someone having a stroke, he said, because they may be physically unable to give permission, and relatives may not be available to do it.

Ben Heywood is president and co-founder PatientsLikeMe, a private organization that advocates for patients’ rights to control how their information is used.

The Cambridge, Massachusetts-based company manages a registry where people with chronic conditions such as stroke can share their health information. The data are shared with patients, researchers and pharmaceutical companies to improve patient care, ultimately benefiting patients, Heywood said.

But he said patients should still have the option to say yes or no. “It’s about securing permission to use the data,” Heywood said.

In Canada, some registries are managed by provincial health ministries and may require patients’ permission to collect their data. But a 2004 study found the process was cumbersome and expensive, requiring nurses to spend about a third of their time going over consent information and costing about half a million Canadian dollars over two years.

In Australia and Sweden, stroke survivors can opt out of the registries.

Registries such as the American Heart Association’s Get With The Guidelines-Stroke and the international nonprofit Safe Implementation of Treatments in Stroke, or SITS registry, track how quickly patients get to hospitals after stroke symptoms begin, how quickly they get a CT scan and what treatment they receive.

Stroke centers in some countries, such as Austria and Russia, are required to add information to registries, according to a recent international review of registries. In countries such as Australia, the United States and Taiwan, hospital participation is voluntary.

“It is important to routinely and reliably monitor processes of care and health outcomes in order to know where unwarranted variation exists so that quality improvement efforts are worthwhile,” said Dominique A. Cadilhac, Ph.D., an associate professor of research at the School of Clinical Sciences at Monash University in Melbourne, Australia. She is the data custodian of Australia’s stroke registry.

Cadilhac and her colleagues recently looked at hospital admission records of more than 17,000 stroke patients in the Australian Stroke Clinical Registry. They found patients treated in specialized stroke units providing evidence-based care were more likely to survive and have a better quality of life than those treated in other hospital wards.

The goal of registries is to also close the gaps in stroke care for women and minorities by looking at how stroke affects groups differently.

Having that data helps identify doctor biases, said neurologist Steven Messé, M.D., associate professor of neurology at the Hospital of the University of Pennsylvania.

Indeed, in a study published last year, Messé and his colleagues looked at medical records of more than 61,000 patients who had an ischemic stroke and were eligible for the clot-busting drug tPA. The researchers learned about three-quarters of eligible patients were treated with the drug, but those with milder stroke symptoms were less likely to receive it.

“That’s one of the important roles of these registries, that when new data becomes available, it [hopefully] changes practices,” Messé said.

Although hospitals have collected stroke patient data since at least the 1950s, the world’s first national registry to assess stroke care started in Sweden in 1994. Since then, registries have been launched in more than a dozen countries, including the United States, Canada, Mexico, Argentina and China. Some are managed by governments, while others are overseen by nonprofits or function as separate entities.

Swedish neurologist Bo Norrving, M.D., Ph.D., was among the researchers who led the effort to create the national stroke registry in Sweden. Because of the registry, more studies have been done looking at the role of income and education. Data on patients’ country of birth has also allowed Swedish researchers to study how common stroke is among immigrants.

Experts say research from registry data has led to some important changes in stroke care around the world.

Emergency departments are better prepared to provide acute stroke care, as are specialized stroke units. There are more stroke prevention initiatives, including in Nigeria, where there’s now more widespread education and awareness, said neurologist Yomi Ogun, M.D., professor of internal medicine and neurology at the College of Medicine of Lagos State University. Data from Nigerian registries has revealed stroke is on the rise in the African country, said Ogun, president of the Nigerian Stroke Society.

Registries have security controls that would make a data breach practically impossible, experts said. In general, researchers who want access to the data must agree to adhere to strict use policies.

Caplan said he’s never heard of patient registries being hacked. He said hospital medical records systems are more valuable to identity thieves than the anonymous information from registries.

Regardless, people routinely share medical information without thinking about it, Caplan said. For example, patients with implanted defibrillators and pacemakers provide health information to device manufacturers that track the machine’s battery life. And people share health data such as weight, height and heart rate through fitness apps and gadgets.

“Maybe we can’t really guarantee privacy the way we once thought we could anyway,” he said.