gms | German Medical Science

50. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie (gmds)
12. Jahrestagung der Deutschen Arbeitsgemeinschaft für Epidemiologie (dae)

Deutsche Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie
Deutsche Arbeitsgemeinschaft für Epidemiologie

12. bis 15.09.2005, Freiburg im Breisgau

Web based Personal Health Records in Germany: a systematic evaluation

Meeting Abstract

  • Roxana Corina Dumitru - Friedrich-Alexander Universität Erlangen-Nürnberg, Erlangen
  • C. Birkmann - Erlangen
  • F. Ückert - Münster
  • H. Prokosch - Erlangen

Deutsche Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie. Deutsche Arbeitsgemeinschaft für Epidemiologie. 50. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie (gmds), 12. Jahrestagung der Deutschen Arbeitsgemeinschaft für Epidemiologie. Freiburg im Breisgau, 12.-15.09.2005. Düsseldorf, Köln: German Medical Science; 2005. Doc05gmds508

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Veröffentlicht: 8. September 2005

© 2005 Dumitru et al.
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Web based Personal Consumer Health Records (PHRs) have been developed for some years now, mostly by for profit companies. The market of these eHealth applications is still immature with much fluctuation, some companies going under while new ones are coming out [1]. Comprehensive evaluations of these systems are crucial [2], yet the few published studies tackling the scientific evaluation of PHRs [3], [4], [5], [6], [7] were generally limited in scope and focussing mostly on one evaluation theme (i.e. overall consumer satisfaction [5], clinical utility from the healthcare professionals point of view [6] or ethical issues of data privacy [7]). In a prior study we have endorsed a comprehensive plan for a thorough evaluation of PHRs . In the current study we use this evaluation plan to initiate a systematic evaluation of the most stable PHRs in Germany to date: Akteonline, Avetana, Careon and Lifesensor [8].


For the evaluation of the four German PHRs we used an evaluation plan which we have developed in a prior work and which consists of a list of the main functions that a PHR may fulfil (i.e. safe keeping of data, user friendly etc) along with the functionalities or objective attributes (i.e. password protected access) and features or subjective attributes (i.e. comprehensive navigation) supporting each of these functions. In regards to the data to be collected with a PHR the evaluation plan endorses a set of data items which has emerged from a literature review on criteria of clinical utility [6] and minimum data sets for PHR [9].

To conduct the evaluation of the four German PHRs in accordance to this evaluation plan we have used the following methods and tools:

Objective inspection. We have inspected each of the four PHRs to check for those functionalities in the evaluation plan which are apparent to the end user
PHR provider questionnaire. This was developed to assess those functionalities of a PHR listed in the evaluation plan which are not apparent to the user (i.e. encryption, coding scheme etc). The questionnaire was distributed to the companies marketing the four German PHRs
Healthcare consumer questionnaire. This was developed to assess those features of a PHR included in the evaluation plan which are related to the user interface. The questionnaire was piloted on 14 independent test users of the 4 German PHRs. A large scale survey with a sample of healthcare consumers representative for the German population is still to be carried out.


All four German PHRs have been found to have the necessary functionalities in place to secure safe keeping of healthcare consumer’s personal data (i.e. appropriate encryption, password protected access etc) and to support authorized access of other users to one’s PHR. In respect to the access of one’s PHR by other authorised users (healthcare providers, next to kin etc.), all four German PHRs have provisions for interfaces to other information systems (i.e. computerized patient records kept in a general medical practice or hospital). They also allow consumers to more or less tune the access of other authorised individual users to their PHR. Yet, only one PHR (Akteonline) has currently in place a TAN based system for directed one time access in emergency situations. The TANs are numerical strings generated by Akteonline much like transaction numbers used for online banking, to allow one time view access to an emergency dataset without the knowledge of the login information of the owner of the PHR, should the owner of the PHR have configured the system to give such access.

As far as the clinical utility is concerned, none of the four PHRs allowed collection of all the items included in the data set contained in our evaluation plan although each PHR collected some additional items (i.e. fitness data, data from routine medical checkups recommended for the age group etc) which were not endorsed by the evaluation plan. Only two (Avetana, Lifesensor) of the four PHRs allowed for the collection of anamnestic data regarding surgical procedures while data items related to consumer’s wishes in respect to Do Not Resuscitate (DNR) status and organ donor were notably missing from all four PHRs. In respect to the function of helping the healthcare consumer to understand, monitor and manage their health condition, one PHR (Careon) generates interpretations and/or suggestions based on the data entered, two PHRs (Akteonline, Lifesensor) allow import of data from health devices used by the consumer, three PHRs (Avetana, Careon, Lifesensor) generate automatic reminders to the consumer based upon the data entered, two PHRs (Akteonline, Careon) keep track of medical appointments and one PHR (Careon) helps the consumer keep their schedule for taking medication. In regards to the function of helping consumers inform themselves and increase their awareness on health and disease, only one PHR (Lifesensor) keeps consumer oriented informative material and serves as a portal to some published literature on health and disease, yet none endorses published literature specifically tuned to the health condition and issues of a particular consumer on the basis of the data entered. One of the four PHRs (Akteonline) serves as a portal to peer health consumers.

In respect to the features of user friendliness we have only piloted the healthcare consumer questionnaire on a small group of test users (n=14). This exercise has enabled us to refine our questionnaire but the results of this pilot were not deemed to have any significance. It may still be worthwhile to report that, in this small pilot, none of the four PHRs obtained best rates on all or most aspects assessed (data collected, organization of data, data entry, navigation, display), each PHR was rated better on some features and not so good on others, the overall marks of the four PHRs were very close, they were generally positive but not enthusiastic, and no best PHR was profiled from this small pilot. A large scale survey of a sample of users of the four PHRs representative for the population of the healthcare consumers in Germany is mandatory for the completion of their evaluation.


Despite a booming Internet advertising of PHRs the development of fully developed prototypes of usable web based PHRs remains slow in Germany. Four products (Akteonline, Avetana, Careon and Lifesensor) were found to have stood the test of time during the last three years [8]. A comprehensive evaluation of existing PHRs by a unified methodology may give valuable feedback to the PHR developers and also to the healthcare consumer trying to decide which PHR product would best suit their own needs. This study initiates the evaluation of the four most stable German PHRs to date by a comprehensive evaluation plan and it shows how this evaluation enables a clear comparison between the performances of various PHR products in terms of their functional specification, clinical utility and user friendliness.


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