MEDINFO 2001 V. Patel et al. (Eds) Amsterdam: IOS Press © 2001 IMIA. All rights reserved 1445 Design of a Consumer Health Record for Supporting the Patient-centered Management of Chronic Diseases Paul A. de Clercq a , Arie Hasman a , Bruce H.R. Wolffenbuttel b a Department of Medical Informatics, University of Maastricht, Maastricht, The Netherlands b Department of Endocrinology, Maastricht Academic Hospital, Maastricht, The Netherlands Abstract This paper describes and discusses the design and usage of a shareable consumer health record system to investigate whether these systems can assist in the management of chronic diseases. This web-based system that can be used both by care providers and patients contains medical and patient information, provides access to websites that contain quality information, provides guideline-based advice, allows discussion between patients and allows us to interrogate both patients and care providers on a regular basis in order to get a good impression of the utility of such a consumer record for both chronic patients and the physicians and nurses. A health record system that was developed for the area of Diabetes is presented as an example. Keywords: Consumer Health Record, Chronic Disease management, Diabetes, Decision support, Internet, Ethnographical approach, Patient-centered care. Introduction Patients are increasingly confronted with Information and Communication Technology (ICT). Chronic patients for example can obtain information about their disease by using a Web-browser. It happens more and more that they take a printout to their physician to discuss patient-related information. The physician is not always familiar with this information. A problem is that from the information available on the printout it is not always easy to determine the quality of the source of the information. But usually physicians appreciate that their patients are actively searching relevant information because this is an indication that the patient feels responsible for his or her treatment. A recent study showed that for chronic patients, a patient- centered approach 1) increases the patient’s satisfaction with their physician's care, 2) increases the patient’s interest in the contents of their medical records and 3) improves the patient’s overall health status [1]. The possibilities of ICT nowadays go even further. Electronic Patient Records (EPRs), for example, are increasingly used to store and represent patient data [2]. In several countries vendors [3] offer disk space to consumers (which may be patients) in which they can store relevant information about their health. The patients pay for the services offered. These vendors usually suggest that information can also be copied from the information systems of physicians, so that the patient eventually possesses a record that contains all relevant information about the patients’s health. When visiting a care provider the patient can now share with the physician those data that (s)he wants: the patient owns the information. Although in principle a good idea, there are a number of problems associated with this approach that should be further evaluated. In the first place not so many systems containing an EPR are at the moment operational. In the Netherlands for example, most GPs use an information system but the specialists usually record medical data on paper. Moreover, currently available information systems (specialist information systems, hospital information systems, GP information systems), due to lack of standardization, store information in different formats and probably use different terminologies. The current consumer record systems are not flexible enough to store the data obtained from the various systems at standard locations, so that a readable consumer record is created. Usually the different pieces of information are pasted together, resulting in spaghetti of stored data: the overview is lost. A new development in consumer health records is the increasing active role of the patient. Not only care providers, but also the patients themselves are allowed to enter (medical) data. Although this may increase the patient’s involvement in the management of their disease, it may also decrease the validity of the medical data. Since patients do not have the medical knowledge and background of a care provider, they may interpret the care provider’s information incorrectly, resulting in erroneously entered data. This paper describes the design and usage of a consumer health record to further investigate these problems and to investigate how both patients and care providers look at the possibilities and limitations of consumer records. In our