Tietoevry Care participates in the CleverHealth Network ecosystem to create digital healthcare innovations. Research projects require close collaboration with other technology companies, research institutions, university hospitals, healthcare organisations and stakeholders. Niina Siipola and Johanna Rihtamo from Tietoevry Care share the latest advances in a research project focused on the diagnosis of rare diseases as well as some other projects.
To diagnose a rare disease, a patient’s care pathway can become very lengthy, requiring, for example, multiple laboratory tests and visits to various healthcare units. Due to delays in diagnosis, the patient’s response to treatment may deteriorate and unnecessary costs are incurred for society. The solution developed in a project within the CHN eCare for Me project entity accelerates the diagnosis of rare diseases and thus improves access to effective care for patients suffering from such conditions.
A secure and certified research environment
Niina Siipola, Portfolio Lead at Tietoevry Care, has been involved in the rare disease diagnosis research project from its early stages. Research is conducted in the modern and secure HUS Acamedic research environment, which utilises data in accordance with research permits
“A prerequisite for the research project is a secure, certified research environment compliant with the EU’s data protection regulation and the Findata legislation governing secondary use of social and health data. The HUS Acamedic research environment is integrated into the versatile data platform of HUS. HUS Acamedic has been developed by Tietoevry Care for HUS Helsinki University Hospital,” says Niina Siipola. In addition to HUS, Tietoevry Care also provides its data platform solution to several wellbeing services counties.
One of the requirements for the project’s success has been a change in legislation regarding secondary use of data. Previously, a clinician in the research group was not permitted to contact a patient about a potentially clinically significant finding that could have enabled the patient to receive care more quickly.
Now, under section 55 of the Secondary Use Act, the holder of a data permit is entitled to notify the responsible person appointed by Findata of a clinically significant finding that could potentially prevent a specific health risk to a patient or significantly improve the quality of care. The responsible person may then, if necessary, break the pseudonymisation of the data and determine who the information concerns. Once the individual is identified, the responsible person forwards the information without undue delay to the expert designated by the Finnish Institute for Health and Welfare (THL). THL then assesses the significance of the finding and, if necessary, contacts the wellbeing services county responsible for the person’s care. If the patient has not refused to be contacted, the clinician may get in touch with the patient.
Niina Siipola emphasises that the legislative change was made possible by the strong dedication and pioneering work of HUS clinicians such as Mikko Seppänen. “The legislative change has been a significant step forward. As a result, in October we will be the first in Finland to validate the algorithm and new national processes developed in the research, together with HUS clinicians and data permit authorities involved in the project. Based on the results, we can assess how well the prediction models work in diagnosing new patients,” says Niina Siipola, and continues: “In addition, we will evaluate the added value of the algorithm developed in the project in clinical work – that is, whether patients are identified more quickly and whether outcomes can be achieved with fewer examinations.”
PHEMS research project promotes the use of paediatric data between hospitals
The three-year PHEMS EU project, launched in 2023, is another CHN project in which Tietoevry Care currently has a central role. The project promotes the use of data related to the treatment of childhood diseases between European hospitals using a federated model – securely and without transferring data. Tietoevry Care has been responsible for the work package related to the solution’s architecture and implementation.
The company has also been involved in designing the project’s ecosystem architecture, governance model and playbook. The technology under development has significant potential, particularly in data driven healthcare, research and product development across Europe.
Excellent collaboration between ecosystem partners
Tietoevry Care is a leading provider of health and social care software with strong Nordic roots and a growing European presence. The company is also one of the founding members of the CHN ecosystem. Tietoevry Care’s Customer Executive, Johanna Rihtamo, is proud of the company’s cooperation with HUS and CHN ecosystem partners. Johanna notes: “The research project focused on rare diseases has been significant and very demanding, and its success has been a major achievement for the entire research team. It would be great to see years of work lead to the solution being genuinely adopted at HUS to support and accelerate the diagnosis of rare diseases and other diseases as well.”
“HUS’s visionary and development-minded clinicians and partners, who want to change the world through their work, have made the research projects and cooperation within CHN especially rewarding,” say Niina Siipola and Johanna Rihtamo in unison.
