Research at UCR improving health worldwide

Stefan James, chief physician and professor, and Jonas Oldgren, director of the UCR, develop systems to better utilise datacollected in healthcare settings.

Photograph: Mikael Wallerstedt

Data collected in healthcare settings must be easier to use for research according to representatives of the Uppsala Clinical Research Center (UCR), which develop systems to better utilise existing data. The idea is that it should lead to better treatments both now and in the future. Even beyond Sweden's borders.

"In healthcare, many recommendations and guidelines are based on 'business as usual' – the way we've always done things. We are bad at weeding out things that aren't good, and making sure that things that are good actually get used. Our information systems are also only useful in systems research to a very limited extent," says Stefan James, chief physician and professor at the Department of Medical Sciences (Cardiology), and also a Wallenberg Clinical Scholar.

Together with Jonas Oldgren, director of the UCR and professor at the Department of Medical Sciences, he is now running a project aimed at finding ways to better utilise existing data for research.

Using different data sources

In concrete terms, it's about using existing, structured data sources such as medical records, cause of death records, and drug records. A system is now being developed that makes it easy for all healthcare professionals to use and apply these.

"There is no standard solution. Instead our role is to simplify and facilitate, and to do so with high integrity so that we don't misuse personal data," says Jonas Oldgren.

Stefan James adds:

"It's less about developing a system in IT form and more a way of thinking about how to collect data easily, so that everyone can use it regardless of their role."

Because there are good reasons for basing treatments on this collected data. UCR studies based on these data sources have been able to show that a number of well-established methods of treating stroke, blood clots and myocardial infarction for example have not turned out to be as beneficial as people previously believed.

"For a long time, oxygen was thought to be a good treatment for myocardial infarction, but no one had considered that the oxygen cannot get to the heart muscle because the blood vessel is clogged, so it does not help to supply oxygen from the outside. Oxygen contracts the blood vessels, which could worsen a heart attack. We did a study of 6,500 patients to answer the question of whether oxygen was useful or possibly dangerous in this clinical situation, and it turned out that it was pointless. This is one of several examples of research being done in a way that is integrated with healthcare practice and produces results rapidly," says Stefan James.

Screws or prosthesis for femoral neck fractures

Another example is an ongoing national study in orthopaedics on whether screws or a prosthesis is the best treatment method for femoral neck fractures – a condition that affects about 9,000 people annually in Sweden.

"All of this aims to improve and monitor quality in healthcare. To make sure that the treatments given are as good as we expect them to be. To create a system of learning where new treatments are developed and where each patient will have the opportunity to contribute by being involved in some type of study. A very concrete problem today is that that people working in healthcare do not have the time and resources to do this," says Jonas Oldgren.

Providing high-quality healthcare is in everyone's interest – the healthcare providers as well as the patients. Simplifying research so that everyone can contribute, at all levels in the care chain, is important.

"The healthcare system is full of good people who want to help. But it's about capturing this and giving them the resources. We want to be here as a resource and capture their ideas so that they lead to something," says Stefan James.

Great trust from patients

So this is also a way of giving patients the chance to contribute by taking part in studies in an easy way. And this has proved important to many people to get the opportunity to do.

"We see great trust from patients. In general a large number consent to participating, even though they themselves might not be able to benefit from the results. Many people still want to contribute if they can – for the future and for the sake of others. It's very human," says Jonas Oldgren.

Stefan James agrees.

"There is so much research that needs to be done. As a patient, you don't want yesterday's healthcare. You want the best that exists today. People also expect to be able to try out tomorrow's healthcare if they get the chance as well."

Answering everyday questions

The basic idea is to work closely with the healthcare setting and the patient and to continuously build on the knowledge base by answering everyday but important questions for the patient – in other words not basic research or work that is in an early stage of development. And that idea also includes the thought that studies via the UCR should be a resource not just nationally but also beyond Sweden's borders.

"Internationally, we target organisations and large corporations rather than individual researchers. Even teaching regulatory authorities to think smarter," says Stefan James.

The idea also involves a meeting between disciplines, higher education institutions and experiences – and nations, according to Jonas Oldgren.

"We want to create the conditions for studies to be done regardless of the healthcare setting. It's also advantageous that we are not a profit-making organisation. We don't need to take on assignments to make money – our mission is to achieve better quality through more and better studies."