The project SUSTAINS – Support USers To Access INformation and Services – has started in January 2012 and will last for three years. It is funded by the European Commission under the CIP ICT-PSP programme. The aim is to develop and deploy a basket of services in 11 European regions providing patients’ access to Electronic Health Records (EHR).
The main concern for EPF is the impact patient-accessible EHR can have on strengthening patient empowerment, which is to us a necessary pre-condition for enabling a paradigm shift whereby the patient is no longer a passive receiver of healthcare services, but becomes directly involved in decisions concerning his/her care. Let us take the example of one European country participating in the SUSTAINS project which has already pioneered such access: Estonia.
Citizens of Estonia have online access to their medical data through the Estonian Electronic Health Record System (EHR) since the beginning of 2009. The EHR is a database that is a part of the State information system where healthcare related data is processed. Citizens can access their own data through the Patient’s Portal, where they can also declare their intentions and preferences. The patient has a right to set access restrictions to documents, cases of illness, and to all his/her information in the EHR. The access to the EHR is also secured by the Estonian countrywide data exchange platform X-Road which ensures sufficient security for the treatment of inquiries made to databases and responses received.
Patient’s Portal allows patient representatives (adult patient, parent of an underage, legal representative, trustee) to browse patient’s health record, download documents, submit consents, update demographics data, get overview of prescribed and dispensed medication, and review patient health record usage logs via Web.
The growth of EHR use has been slow but steady. Now the Estonian E-health Foundation wants to use the project “Sustains” to improve even more services to patients, to make them more interested in their data and to empower them.
For this very reason the Estonian E-health Foundation has established an on-going dialogue with the Estonian Chamber of Disabled People, member of EPF, in an attempt to thoroughly ensure the new services are as aligned as possible with patients’ needs and preferences.
The project will help partner countries to share their own experience even if each country is different and patients have different needs. The result will be the same: all the services should ultimately contribute to enabling patients to become more active players in the management of their own health.