Empowerment of patients and communication with health care professionals through an electronic health record
Introduction
At present the improvement of communication between different institutions of the Public Health Service (e.g. between outpatient and Hospital departments and even between physicians and patients) is the research focus of many projects. Effective and continuous patient-care and management of therapy spread over several institutions need communication relating to patient data between these institutions and sometimes even the integration of such data. As illustrated for example by Kuhn and Giuse [1] the shift of healthcare organizations towards integrated care and integrated healthcare networks provides new challenges for the development of health information systems.
Many of the telemedicine systems being currently implemented aim at faster and more extensive communication of patient data across institutional borders. Others extend their focus towards the challenge of really integrating patient data within electronic patient records. Different steps of integration were described by Waegemann [2]. He mentioned at first the automated medical record, computerized medical record and electronic medical record as different stages of automation within one health institution. On top of that electronic patient records play their role by extending the record integration across the borders of institutions. The last step, the so called electronic health record, further includes the control of a responsible citizen over his or her own medical data including the possibility of reviewing his/her health record over the internet and even adding health data himself.
Examples of projects which try to improve the communication between primary and secondary care as well as among primary care physicians have been reported by Heitmann et al. [3], Hellmann [4] and Moorman et al. [5]. Even though the process of newly defining the doctor–patient-relationship started already a few years ago in the US and the UK (see [6], [7], [8], [9]), only few projects yet try to empower the citizen himself by giving him the management control over his own record in the meaning of an electronic health record as described above (compare [10]).
Ball and Lillis [11] summarize new possibilities arising through internet technologies under the expression e-health, and write:
“With its capacity for inexpensively retrieving information when, where, and how it is needed, the Internet is already transforming the physician/patient encounters. In fact, the word ‘patient’ is being slowly replaced, at least implicitly, by ‘consumer’. As increasing numbers of healthcare consumers demand a more active role in their own care, the two sides of the power scale are edging towards balance”.
Even if this new expression of “electronic health” is nothing more than a new catchword, the above cited papers at least underline a new process of thinking, which starts new relationships between doctors and patients. It also points out which role the empowered citizen will play in the future of our health system.
While first evaluation results of patients accessing their personal medical records show their willingness to be empowered by such an access, their wish to really “control” their health records still varies [12], [13], [14]. Researchers agree in the conclusion that security features need to be flexible and configurable, based on the needs and expectations of users and the actual functionality provided by the EHR [12].
Section snippets
Electronic health record akteonline.de
In this context, at Muenster University Hospital we have initiated a project to design and develop an EHR already in the year 2000, which has been called akteonline.de [15] (which is an artificial German term meaning “medical record online”). The goals of akteonline.de as an electronic health record are
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to give citizens the possibility to be in charge of their own health record electronically,
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to provide access to this record through the internet independent from place and time,
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to present
Contents
In contrast to many other EHR developments, which limit their current functionalities to a password protected interactive patient access to their EHR via the Internet [14], the concept of akteonline.de considers a much wider approach.
The contents relating to a patient's medical data comprises personal data, general medical data (e.g. with passport function in case of a chronic disease like Diabetes or special condition like taking anti-coagulation medicine), medications (e.g. with stopped
Security
The aspects of security are manifold. Among the technical protections of hard- and software not only the kind of storage and transport of data, but also the internal structures, which allow users to give different levels of authorization to their providers or caring relatives, must be considered.
First of all, on the basic technical level, akteonline.de has been split into two different logical databases which can be established on separated hardware platforms. The first database contains
Deputy
The management of the record can be assigned to another user (e.g. a relative) without giving the own personal password away and loosing control or the overall view who made which changes. All activities of the deputy—exactly like anybody else's—are logged and electronically signed, so the owner of the record can understand all the changes of his data. The deputy function makes it a lot easier to integrate minors or seniors, who are not able to use or who are not used to the Internet (Fig. 3).
One-time access
Clinical implementations
Akteonline.de is currently applied within three clinical projects at Muenster University Hospital.
Discussion
The view of the electronic healthcare record akteonline.de is patient oriented. It is designed primarily for the direct use of citizens their selves. It currently comprises a basic structure for the documentation of personal health data, patient information for childhood examinations and vaccination programs as well as a clinical pathway monitoring engine which is intended to support preventive care. At the same time it provides possibilities of communicating health record subsets with other
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