Primary care data use: MedMij platform
Why is primary care data important?
Patients' data collected in electronic health records by one healthcare professional may need to be accessed and shared with other healthcare professionals. For example, post-surgery, health data for a patient with chronic health issues may need to be shared with a rehabilitation therapist and with a pharmacist to ensure continuity of care from the acute setting to the community, while also balancing therapies and interventions that manage pre-existing health issues. Data privacy and protection regulations in many jurisdictions give the patient the right to decide who they share their health data with, even if it is between healthcare professionals within primary care.
Enabling electronic health records data sharing
In The Netherlands, a platform (known as a personal health environment) called MedMij is allowing patients to access their electronic health records and share their data securely. MedMij enables data sharing between patients, healthcare providers, health systems and the Dutch Patients Association through specific data governance processes and policies, including:
Healthcare providers must register to receive access to health data. The national health department manages the registrations.
Technology companies providing the electronic health records platform must also register and be approved to ensure they meet regulations and are secure.
MedMij allows patients to set consent rules for when their health data can be shared.
MedMij then enables data sharing, such as with healthcare professionals, in line with governing data privacy regulations and the patients’ consent rules.
To transfer health data securely, MedMij uses the Fast Healthcare Interoperability Resources (HL7 FHIR) API standards. Use of standards and data models are continually updated in their information knowledge base.
What can we learn from this case study?
The quality of personal healthcare provided across The Netherlands is enhanced by MedMij enabling secure, patient-consented health data to be shared while complying with data protection regulations.
The platform has also spurred the growth of new businesses and start-ups: there are now 30 registered apps that connect with the MedMij platform, and unlike in other countries where health data is often managed by the caregiver, the MedMij ecosystem enables patients to be in control of their health data. MedMij is forecasted to save citizens 120 million euros over 10 years in improved self-management of health, and governments are expected to save 200 million euros over 10 years from optimised healthcare planning.
What is challenging?
The capabilities of the platform are enshrined in policies from the health department, but are not yet governed by specific legislation.
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