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

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AUTHORS:
Verlinden SFF 1 (stef@vivici.nl), Freriks G 2

INSTITUTIONS:
1) Vivici BV, Leiden, Netherlands 2) Conexis, Buitenkaag, Netherlands

BACKGROUND:
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 interoperability.

METHODS:
A web based PHR is developed based on the international open European standard CEN/tc251 EN-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 individual 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 EN13606 and use of the openEHR architecture 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 juridical-legal issues such as responsibility. These issues will occur more and more in the near future when the (Dutch) government enforces ‘chain-care’ concept that will force healthcare 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 24x7 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 legal-legal issues. An Internet based PHR is generated which, due to the fact that it complies with international open European standards and information models (EN 13606 and openEHR), meets these requirements.
Patients can enter, access and share their healthcare information safely with whom they chose and therefore take control over their own health.

REFERENCES:
1. http://www.centc251.org/TCMeet/doclist/TCdoc04/N04-012prEN13606-1_2WD.pdf
2. http://svn.openehr.org/specification/TRUNK/publishing/architecture/rm/ehr_im.pdf
3. http://www.deepthought.com.au/it/archetypes/Output/archetypesTOC.html
4. http://oceaninformatics.biz/archetype_editor/ArchetypeEditor_download.html