Sweden’s InfCareHIV benefits patients and physicians – unified data ensures efficiency of care
- chris94265
- Jan 24
- 3 min read
InfCareHIV which includes a decision support system, a nationwide Quality Register and a research data base, is used nationally for the treatment of people living with HIV in Sweden. It was established in 2003 to ensure equal and effective care of people living with HIV and enable their long-term follow-up.
Dr Christina Carlander has been Director of the National Quality Register InfCareHIV in Sweden since 2021. She works at Karolinska University Hospital, where she sees patients living with HIV, and she is also affiliated to Karolinska Institutet in Stockholm, one of the world’s foremost medical universities. Carlander has done extensive research involving HIV since 2012. In 2018, she published her dissertation focusing on the risks of having cervical cancer in migrant women living with HIV.
“Nowadays, I spend 40% of my time at the Karolinska University Hospital, 40% on InfCareHIV, and 20% on research. I’ve always used InfCareHIV in my research and my work as a physician when I see my patients.”
InfCareHIV responds to three needs
Clinicians and researchers initially proposed an HIV decision support system. Joakim Söderberg, the founder of Health Solutions – a company that merged with BCB Medical in 2021 – was actively involved in creating the system.
Carlander describes the needs behind InfCareHIV as the three legs of InfCareHIV.
“There was a need for a clinical tool for daily use when working with patients. There was also a need for a Nationwide Quality Register to provide equal care and save lives. And finally, there was a need for a research base. InfCareHIV fulfils all these requirements.”
Before the creation of InfCareHIV, researchers, clinicians, and hospitals providing care for HIV patients recorded data using different measures, tools, and platforms. The lack of unified data made comparing the efficiency of care and treatment pathways difficult.
Benefits for doctors and patients
Today, the clinical decision tool, as an essential part of InfCareHIV, is actively used by almost all physicians at every patient visit. The clinical decision tool makes it easier for the doctor to see the patient’s current situation – what medicines the patients are on currently and historically, the level of virus in the blood, when the patient is undetectable i.e. not transmittable, etc. The quality of the clinical decision tool remains high because it is used constantly and considered useful by and for clinicians.
Carlander herself uses it regularly in her work as an attending physician.
“When I started working at Karolinska University Hospital in 2021, I took over the care of around 500 patients. Getting a grasp of the patient data can be challenging, but thanks to InfCareHIV, I could see all the data with one glance.”
The system is also an excellent pedagogical tool.
“Patients themselves are interested in the graphs that show their laboratory results. For instance, if they are having difficulties taking their medication, it shows up in the graphs very q
uickly.”
Benefits for the healthcare sector and society
InfCareHIV is a valuable research data base thanks to its high data quality and almost 100% coverage. It has been extensively used in various healthcare studies.
As a society, Sweden has greatly benefited from the clinical decision support system. It has contributed to the fact that Sweden was the first country in the world, in 2015, to publish that they had reached WHO’s 90-90-90 goal in the care of HIV patients:
90% diagnosed
90% of people with diagnosed HIV on antiretroviral therapy (ART)
90% of those on ART with viral suppression
Today, Sweden has already reached the 95-95-95 goals.
“In many countries, the results in the care of HIV patients are just as good, but they don’t have nationwide statistics at their disposal, whereas we can accurately measure our success.”
Finland is also using the InfCareHIV decisio
n support system, and similar register systems are in use in Denmark, France, Greece, Italy, and Switzerland.
“We have some Nordic collaboration and joint publications with, for instance, Denmark and Finland, and multicentre HIV cohorts, but collaboration is something we could do more.”
Listening to the patients in development
For further development of InfCareHIV, there is fruitful collaboration with patient organisations and a patient representative in the steering committee. Work is underway, for instance, for an update on the integration with 1177, the national healthcare helpline and website that provides information about illnesses, care, and health in Sweden. The questionnaire on the PROMs (patient-reported outcome measures) is already available via 1177, but the decision tool graph still needs to be.
“Currently, only 40% of patients answer these PROM questionnaires, mainly because the health care personnel have little time to spare. Patients have asked for the possibility of getting the graphs to the 1177.se website so they can access them at home”, Carlander says.
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