A consumer health record for supporting the patient-centered management of chronic diseases.
OBJECTIVE
To design and implement a shareable consumer health record system to investigate whether the system can assist in the management of chronic diseases.


METHODS
A toolkit was designed for constructing the consumer health record system in an evolutionary way. An ethnographic-like approach (formative evaluation) was used to let users (patients and care providers) assess the system leading to incremental changes in the system.


RESULTS
The evaluation provided us with sufficient information about which parts of the system needed adaptation. The final consumer health record system was well accepted by patients and care providers. The system is Web-based and is used at home by patients having diabetes. Both care providers and patients enter data. The system can download the data from a glucose meter. It provides feedback to patients on the basis of entered data and incorporated guidelines. It also allows discussion forums.


CONCLUSIONS
Formative evaluation is useful for obtaining feedback from users about prototype systems. Care providers and patients together worked with the consumer health record. Both parties appreciated the system. The approach described here can be used for developing systems for other chronic patient groups.
De Clercq
Paul A
PA
Department of Medical Informatics, University of Maastricht, Maastricht, The Netherlands. p.declercq@mi.unimaas.nl
Hasman
Arie
A
Wolffenbuttel
Bruce H R
BH
D000884:Anthropology, Cultural; D001292:Attitude to Computers; D015190:Blood Glucose Self-Monitoring / Q000379:methods; D002908:Chronic Disease / Q000628:therapy*; D020000:Decision Support Systems, Clinical; D003920:Diabetes Mellitus / Q000097:blood / Q000628:therapy; D019468:Disease Management; D006801:Humans; D020407:Internet; D016347:Medical Records Systems, Computerized; D010358:Patient Participation; D017060:Patient Satisfaction; D018802:Patient-Centered Care / Q000379:methods*; D011795:Surveys and Questionnaires