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A personal health care record (PHR) based on international open
standards facilitates true patient empowerment

True patient empowerment starts with the control over your own health data.
The person who controls the data is primary responsible for the whole picture
and can assure quality of treatments, services and care provided.

Of course patients can delegate this responsibility to f.i. their family doctor.
In that case an underlying ‘service level agreement’ should take care of the mutual expectations and responsibilities.

Traditionally patient records are generated, maintained and controlled by
the individual health care providers. This results in fragmented bits of data stored somewhere in the office of the healthcare provider who generated it. Currently,
at least in the Netherlands, most health care records are based on proprietary software, which doesn’t connect to open communication standards.

As a result data isn’t shared between healthcare providers. Therefore no person has the complete picture, specifically the subject of all of this: the patient.

Objective: To provide a web based PHR that facilitates true patient empowerment, optimal patient care that allows plug and play interopera-bility.

Methods: A web based PHR is developed based on the international open standard CEN/ISO-13606(1) and the openEHR information model(2). To guarantee privacy, medical and personal data are physically separated and controlled by different institutions. No data that can uniquely identify the patient
is stored in the PHR. This and the fact that the secret key to connect an indivi-dual to a PHR is controlled by an independent organisation, guarantees the privacy. To enter and view data, archetypes(3) for each separate knowledge domain were created using the Archetype editor(4). Besides the demographic archetype, archetypes were created for actual disease/disorders and episodes, actual medication, length, weight, blood pressure, blood-glucose, cholesterol
and vaccinations.

Results: Compliance to the CEN/ISO 13606 and use of the openEHR archi-tecture provides ‘plug and play’ semantic interoperability. As integrated part
the system generates a complete and detailed audit trail: every data entry point can be retrieved in its original context digitally undersigned by the responsible person. The latter is crucial to address medico-legal issues
such as respons-ibility. These issues will occur more and more in the near future when the
(Dutch) government enforces ‘chain-care’ concepts that will force health-care providers to use data generated by others. After secure login via a
webpage, patients and health care providers can enter and share health related data via
a secure web portal that is available 24×7 through the Internet.

Conclusion: Essential for true patient empowerment is control over your
own healthcare data. Systems offering this control also should guarantee privacy, provide plug and play semantic interoperability and deal with medico-legal issues. An Internet based PHR is generated which, due to the fact that it com-plies with international open standards and information models (CEN/ISO 13606 and openEHR), meets these requirements. Patients can enter, access and share their healthcare information safely
with whom they chose and there-fore take control over their own health.

References:
1 http://www.centc251.org/TCMeet/doclist/TCdoc04/N04012prEN136061_
2WD.pdf
2 http://svn.openehr.org/specification/TRUNK/publishing/architecture/rm/
ehr_im.pdf
3 http://www.deepthought.com.au/it/archetypes/Output/archetypes
TOC.html
4 http://oceaninformatics.biz/archetype_editor/Archetype
Editor_download.html

Oral presentation @ MedNet2007 Leipzig