Little innovative and effective solutions using health data are created

Challenge: Little innovative and effective solutions using health data are created

• Current legislation makes the secondary use of data in platform solutions difficult. Under the Act on the Secondary Use of Social Welfare and Health Data, the secondary use of data is handled by Findata, which results in considerable delays. Service providers are additionally unable to combine sensitive social welfare and healthcare data with other types of welfare data. However, the possibility of combining  data would be valuable for individuals and the developers of new services. It is unclear to companies what they may do and how, in what situation permissions are needed, and when the product they have developed is a medical device. There is no one-stop shop for help in managing the whole process, and the answers given even by the same agency are not always consistent. A consistent data model for health data has not been defined nationally. Practical solutions under anonymisation rules and general security requirements are unclear. The use of data which crosses the boundaries of different registers is also challenging. In home care, for example, the transfer of information between occupational groups across the boundaries of social welfare and healthcare is a significant problem, for example between practical nurses and support services.
• Individual patients’ health data cannot be used for developing innovative and platform-type solutions. Individual patients’ health data could be used much more efficiently in services that promote health, welfare and the quality of life. Patient data not registered in the Kanta services mainly remain in the individual service providers’ information data systems or in internal use of hospital districts. Other service providers cannot readily use the collected data in their services because the patient data systems are closed or incompatible, and there are no incentives to share the data. Such services could include monitoring services for patients and the benefits of treatment. The administrative boundaries of healthcare do not encourage data sharing, high-quality data production or the development of a common data sharing model. Creating uniform treatment practises is also difficult as the data quality is not consistent. It is difficult for the patient to manage their health data, such as their X-ray images, located in many different information systems. Similarly, it is not always possible for the patient to promote the accessibility of data, for example by allowing the free use of their anonymised or unanonymised data by certain service providers.
• The accumulation of health data with large actors slows down the development of new platform-type solutions. The accumulation of health data gives an advantage to large actors in the private and public sector. Large actors have no incentives to share the accumulated data, especially as health and welfare data give them a competitive advantage. The accumulation of data in the closed systems of large actors is particularly detrimental to new actors who wish to develop platform-based solutions based on health data.

Recommendation: Individuals’ right to manage their health data and promote its use should be strengthened

• Strengthening the role of individuals in health data management. To facilitate data sharing, the individual should be defined as the owner of the data in stronger terms. The management of data by individuals would promote the development of platform-type health services, such as identifying the need for treatment, finding a physician, assessing the impacts of treatment and effectively guiding rehabilitation. Individuals should be able to grant a permission for using their health data to platform-based companies based on a mutual agreement. Individuals should also be able to export data to Kanta services. Better management of health data can be partly based on existing services (including Suomi.fi, Omaolo, Päivystysapu, My Kanta, Terveyskylä.fi).
• Improving the practises for the secondary use and anonymisation of data. Legislation should allow the integration of health data with other wellbeing data. As practises are developed, the possibility of transferring data across register boundaries should also be considered. Denmark is a good example of how data can be made available to research and research industry through the Forskerservice services. Combining sets of big data would make sense for society, as this could enable better targeted treatment, reduce the number of duplicate analyses, and potentially help diagnose hidden diseases. For the purposes of data quality assurance, the Finnish Institute for Health and Welfare should publish a guide on the recording of treatment and patient data for all groups of social welfare and health care professionals, specifying what should be recorded and where, and whether the guidelines are recommendations or obligations. Adherence to the recording recommendations should also be improved.
• Supporting the use of consistent data standards. A national data model for health data should be created. It should be harmonised with international standards (including openEHR and OMOP data models). The national data model should include the necessary identifiers, such as components, laboratory results, the identifiers of physicians and nurses, and technical authentication. Treatment processes and all health and wellbeing devices should be compatible with this jointly determined data model. The data models should be updated as the medical science advances, similarly to open source code.