Digital vandrejournal for patienter med kroniske ... - Kronikerenheden

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English Summary
Personal health records for the chronic sick – a review of literature
The concept of the ’digital travelling health record’ is used as a colloquial metaphor in Danish to
describe the demand for an IT solution that fulfils the same requirements as its printed equivalent. The
northern Jutland vision is to develop a personal health record (PHR) for patients with a chronic
disorder. As the concept of the ‘travelling health record’ does not exist in the context of health
informatics, the literature search used the search terms ‘portals’ and ‘Personal Health Record’. The
review of literature covers the period from 2000 to May 2009.
As from 2000 to date, a number of demonstration and research projects have been conducted in
Denmark and abroad, involving various web-based portals and testing the following functions:
travelling health records, decision support and combinations of multiple functions. The portal-based
solutions target mainly patients with a chronic disorder such as diabetes, asthma and chronic
obstructive pulmonary disease (COPD).
Literature shows that patients have the following experience with the use of portals: learn more about
own health; get a broader view of how to coordinate own disorder; learn more about the medical
decision-making process; improved ability to remember instructions and information; increased
participation in own treatment and care; continuity in patient care process and enhanced selfmanagement.
Patients use the portals to view and monitor laboratory results: view test results; make
medical appointments; renew prescriptions; apply for referrals to specialists, etc. and email
correspondence with healthcare professionals.
Healthcare professionals have via studies of portals the following experience: patients’ understanding
of personal health increases; improves communications between the patient and the healthcare
professional; a slightly less personally close relationship with the patients; successfully supports a
chronic-care-model; shifts skills among healthcare professionals and contributes to a different
documentation practice. There is a lack of systematic documentation in the field as to the impact of
portal use in the patient-healthcare professional relationship in terms of patient security, efficiency of
treatment and care, patient satisfaction and quality in treatment and care.
So far, PHR has not been introduced in any Danish context. In the USA and Canada the use of PHR is
becoming more widespread, although there is no systematic documentation on the topic. The question
is whether the patients of the future will start to visit, for instance, Google Health or Microsoft Health
Vault in order to retrieve, coordinate and share personal health data with healthcare professionals.
Upon the review of literature a number of challenges present themselves in connection with the
prevalence and practical application of portal-based solutions and PHR: it is about interoperationability
– that is, the lack of standards for the exchange of data between a portal and a PHR
vis-à-vis the EMR; legal issues – who owns the data? Who has access to which data? Ethical issues,
including the safeguarding of privacy.