Access to Electronic Health Records: the example of Estonia
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.
This blog arises from the EPF 2012 Work Programme, which has received funding from the European Union, in the framework of the Health Programme.
Thank you to acknowledge the EU funds as well as this project is funded by the European Commission under the CIP ICT-PSP programme. It is called a “Thematic Network” that is providing a forum for stakeholders for experience exchange and consensus building on ICT policy implementation.
My organisation, The Estonian Chamber of Disabled People is joining together 46 patient groups covering various disabilities and chronicle diseases. Being established in 1993, we have worked with many issues for people with disabilities, advocating for better quality of life and greater involvement in the decision making processes.
EPIK is member of EPF since 2008. The SUSTAINS project focus group meeting was taking place on April 16, was held at the headquarters of EPIK. The discussion on the current patient portal and around ideas of developing the patient portal further was very interesting. Although Estonia is having many e-services and people are using the services widely, as mentioned in the article, the development happens slowly but steadily and the patients are keen to get more solutions across.
We are at the Estonian Chamber of Disabled People happy to be involved in the SUSTAINS project, the potential of patient portal and e-health solutions is huge and being the large membership based network of people with disabilities and patients of cronicle disease, our members will utilise the e-services increasingly, as more and more information will be put online.
We are looking forward to fruitful co-operation within the SUSTAINS project
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Hmm is anyone else encountering problems with the pictures on this
blog loading? I’m trying to figure out if its a problem on my end or if it’s the blog.
Any feedback would be greatly appreciated.