Diabetes Register paving the way for the utilisation of Kanta data in research and knowledge-based management
The Finnish Institute for Health and Welfare (THL) pilot on data collection in the Diabetes Register has provided the first experiences on the usability of Kanta's Patient Data Repository in secondary use, such as in research and knowledge-based management. The data collected from the Kanta services serve as a basis for a national Diabetes Register, which can be used to monitor and develop the quality of diabetes treatment.
Treatment of diabetes evolving
The pilot provided further information on the prevalence of diabetes and its additional diseases as well as on the laboratory tests used to monitor them nationally.
"We dare to predict that, at the end of 2022, we will have at our disposal a national register that meets the needs of quality assessment and peer development of diabetes treatment, which produces wellbeing services county and municipality-specific quality information on public and private health care ," says Chief Physician Saara Metso from Pirkanmaa Hospital District.
"The register’s key data elements are now available, with the exception of lifestyle data, physiological measurements and PROMs, i.e. health data reported by patients themselves," Metso continues.
The Patient Data Repository appears to be a useful source of information for the national monitoring and comparison of laboratory tests used in the monitoring of diabetes.
"It has previously not been possible to collect such extensive data on laboratory tests related to diabetes nationally. We now had over 700 million laboratory analyses at our disposal, which enabled us to assess the coverage of laboratory data in Finland. There was great variation in the coverage between different municipalities and operating units ", says Jere Veltheim, Project Manager of the Diabetes Register data pool pilot at THL.
As a rule, the assessment of the incidence of additional diseases based on diagnoses and procedure codes and the formation of therapeutic subgroups were successful.
The pilot also found development targets for data stored in the Patient Data Repository. The recording of imaging data is inadequate, which is why no information has been obtained on the implementation and effectiveness of the monitoring of diabetic eye disease.
Cooperation to improve the quality of information
Further development to secure more comprehensive information will be carried out in cooperation with the Kanta services, health and social service organisations, information system suppliers, health and social service professionals and patients. The work will also continue within the scope of the Ministry of Social Affairs and Health’s Valtava project, which is aiming to develop information production in social and health services.
The production of reliable data is influenced by uniform recording of data, the use of correct code sets and functional interfaces in data transfer.
"Improving the comprehensiveness and quality of information can be achieved through commitment and good cooperation between all actors," says Veltheim.
Pilot paving the way for secondary use of Kanta data
The experiences from the pilot can also be used in the development of other quality registers and national health and social services data repositories.
The Act on the Secondary Use of Social and Health Data (Secondary Use Act), which entered into force in 2019, will make the secondary use of Kanta data easier and more efficient. The Act enables the secure processing and use of social and health data, for example, in research and knowledge-based management.
"The Patient Data Repository contains extensive customer and patient data from both private and public social and health service controllers. National data can be collected in one place without any additional registration work through Kanta data repositories. This will save society's resources and gives social welfare and health care professionals time to focus on their actual work, i.e. patient care,“ says Veltheim.
"The opportunities are very significant in terms of public health. We will all benefit from treatment and services based on more comprehensive information,” Veltheim concludes.
Further information:
Jere Veltheim
Project Manager, Data pool pilot of the diabetes register
THL
[email protected]
Saara Metso
Chief Physician, person in charge of the Diabetes Register
Pirkanmaa Hospital District
[email protected]
