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In the middle of "The Swine Flu" epidemic, Uppsala Clinical Research Center (UCR) was asked to create a flu registry for tracking the impact of the flu on Swedish ICUs. They were very short in time and completed the task in less than a month. This was made possible by using PheedIt, a web-based solution from SAS Institute. The result is a complete registry in which information about the most severe flu cases has been collected. It can be re-opened in case of a new outbreak of the flu, and can also be used for research and prevention. Consequently, UCR has obtained essential experience in developing a quality register in record-breaking time.

– The SAS solution enabled us to get the registry up and running very quickly. Among the things that made this possible, was the fact that the solution was extensively pre-defined. Although it was also due to our very skilled and determined employees, and the fact that it was an important and urgent task that many people felt strongly about, says Rolf Gedeborg, researcher at Uppsala Clinical Research Center, UCR.

The swine flu, which ravaged the population during the second half of 2009, was classed as a pandemic. Experience from the southern hemisphere, where the flu originated, indicated that it struck younger people more extensively than a normal flu, and that more patients required intensive care. There was an imminent risk of bed shortages in Swedish intensive care units, which were under considerable pressure already.

In order to gather information about flu patients and to assess and predict the impact on ICUs, IRIS (the Swedish ICU Flu Registry) was created. This was done on the initiative of the Swedish ICU Association, an association of physicians from Swedish intensive care units, and led to the task of creating a quality register.

– The existing Swedish intensive care registry were not able to undertake the task, says Rolf Gedeborg, who was on the board of the ICU Association and also participated in setting up the project.

Rolf identified that the task could be handled by UCR, one of several Competence Centers assigned to maintain quality registers by the National Board of Health and Welfare. This would be done using PheedIt – a web solution for clinical trials, developed by a group of Swedish specialists at SAS Institute, and which was being used in a UCR pilot project.

The task was assigned to UCR and the registry was jointly funded by SKL (the Swedish Association of Local Authorities and Regions) and the National Board of Health and Welfare. The objective was to have the registry up and running within three to five weeks.

– Preferably, it should have been finished "yesterday". In normal circumstances, it takes six months to create a registry like this, but the epidemic was ongoing and we worked under pressure. I have a hard time imagining that it would have been possible without PheedIt, says Rolf Gedeborg.

It took UCR four weeks to build the registry and get it operational. PheedIt supports the entire chain from setting up the study to inputting, validating and exporting data. The solution is quick to implement and can easily be combined with other systems and data sources.

Every ICU in Sweden appointed two users to be in charge of registration, a total of 84 users. When the users connected to PheedIt, they were directed to a portal with a user-friendly interface where they registered the data, and the information was uploaded directly to the SAS solution. Thanks to PheedIt, the data was quickly and easily validated at the time of registration.

– The time to get the system operational was very short and it didn't require much support. In principle, the staff registering the data had no problems whatsoever, says Rolf, who was the project manager, coordinator and also responsible for generating reports.

However, we had limited time for user training. This was solved by first providing the users with web access to a training environment and later, when they had mastered that, access to the production environment. Rolf Gedeborg also stresses the importance of getting the users involved and supporting them in order to promote the solution.

A comprehensive amount of data was gathered about each patient – approximately five pages of background information about previous illnesses, vaccinations, physical condition, the progress of the illness, complications, treatments, etc.

Unlike other quality registers, IRIS not only provided annual reports, but also forecasted the regional impact of the epidemic that could be used by ICUs for planning purposes. This required weekly reports at least. Analyses were conducted from day one – initially based on simulated data, and reports were delivered to the authorized users as well as to the Swedish Institute for Infectious Disease Control, SKL and the National Board of Health and Welfare.

The pandemic subsided much more quickly than had been anticipated and since the beginning of the year, no new cases have been reported. The registry is now closed, but can be re-opened if the swine flu reappears. The registry will also be used for research purposes. More or less every patient who was treated for the swine flu in an ICU has been included in the registry.

– Some things that became apparent, with allowances for the small sample size, are that the gender and age distribution among ICU patients was different in   Sweden compared to many other countries. There were more men and more patients between the ages of 40 and 60. Patients with high blood pressure also seemed to be overrepresented, says Rolf.

The analysis of the information continues within various UCR research projects. The information can also be used in order to better manage another outbreak of the swine flu or other, similar epidemics.

– Being able to quickly adapt and collate data is of immense value throughout the entire healthcare sector and now we know that it is possible to build a quality register in a very short time. If we are given a similar task again, we could do it even more quickly, Rolf Gedeborg concludes.

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Uppsala Clinical Research Center - Kvalitetsregister

UCR were chargeded with setting up a flu registry in the middle of an ongoing pandemic. There was very little time and preferably, the registry should have been finished "yesterday". In addition, every ICU in the country must be persuaded to use the registry.
Using PheedIt from SAS, UCR were able to set up a quality register and get it up and running in less than four weeks. Using a web interface, the users in each ICU were able to input the information directly into the system.
UCR has created a quality register that can be used for research into epidemics as well as re-opened in case of another outbreak of the swine flu. The knowledge of how to quickly set up a registry can be used for completing similar assignments even more quickly.
Healthcare quality register. There are around 70 national quality registers containing personal data about symptoms/diagnoses, treatments and results. They are maintained through joint funding by principals of the healthcare institutions and the state.

Now we know that, using PheedIt, it is possible to build
a quality register in a very short time. I have a hard time
imagining that it would have been possible without PheedIt.

       -Rolf Gedeborg
        Associate Professor
Uppsala Clinical Research Center (UCR)