Development and evaluation of an interactive information system for patients with chronic diseases (InfoChron)
Weymann, N., Dirmaier, J., Härter, M.
Institut und Poliklinik für Medizinische Psychologie, Zentrum für Psychosoziale Medizin,
Universitätsklinikum Hamburg-Eppendorf
Background
The chronic progression of disease demands numerous treatment decisions from the patient. This decision-making process is often difficult for the patients, as the concern is not only with selecting the “right” therapy option but also with personal values and priorities regarding advantages and disadvantages of these therapy options. As a support in the medical decision-making process, patient information and so-called decision aids can be implemented. However, so far, there are no such decision aids in the German language for Diabetes Mellitus type 2 or for chronic back pain, even though the two indications are of great epidemiological and economic importance in Germany. Based on the current state of research, for patients with Diabetes Mellitus and chronic back pain, an interactive, preference-sensitive, web-based patient information system to prepare patients for medical decisions is being developed and evaluated.
Aims and hypotheses
The primary aim of the study is to improve patient information and medical decision-making through a needs-oriented provision of information. With the system, chronically ill patients should be informed regarding the two indication areas of Diabetes Mellitus type 2 and chronic back pain comprehensively and in accordance with their needs. The web-based presentation enables a large number of patients to be reached with individualised information. With the help of this information, knowledge and empowerment of the patients should be improved, patients should learn about the advantages and disadvantages of disease-specific treatment possibilities, and possible decision conflicts should be reduced. A further goal is to achieve an improved preparation of the patients for physician consultations in which individual medical decisions are made. In the framework of a randomised controlled study, it is examined whether the use of a needs-oriented, preference-sensitive patient information system with an individualised and interactive presentation of contents has the following advantages compared to presentation on a standard website: greater knowledge gain, greater empowerment, stronger acceptance and utilisation of the intervention, better preparation for medical decision-making and lower decision conflict.
Methods
In the framework of the development of the interactive information system, a needs analysis is conducted. In this respect, firstly, interviews with patients and practitioners are carried out, followed by a questionnaire survey with patients. A multidisciplinary team of experts monitors the creation of the contents with repeated peer reviews. A review of the programmed system by patients and experts from science and practice allows final modifications and rounds off the system development.
The evaluation ensues in the form of a randomised controlled study. The examination of the effectiveness of the interactive information system compared to a standard website is carried out in a sample of approx. N = 826 patients (intervention group N = 413; control group N = 413) for the respective indication. In this regard, the intervention and control group receive identical information which only differs in terms of the manner of presentation (preference-sensitive, interactive, individualised presentation vs. standard website). The dissemination occurs through the linking with Internet sites of cooperating health insurers, clinics and practices. A follow-up takes place after three months.
Current status
The development of the information system is concluded; the evaluation begins in summer 2012. The project will be completed in summer 2013.
National and international cooperation partners
- Techniker Krankenkasse Hamburg, Dr. T. Hecke;
- AOK Baden-Württemberg, Dr. Ch. Hermann;
- Deutsche Rentenversicherung Bund, Berlin, Dr. S. Brüggemann;
- Ärztliches Zentrum für Qualität in der Medizin, Berlin, Dr. S. Sänger, Prof. Dr. Dr. G. Ollenschläger;
- Deutsches Cochrane Zentrum Freiburg, Dr. G. Antes, Dr. B. Lang;
- Gesundes Kinzigtal GmbH, H. Hildebrand;
- Rehabilitationswissenschaftlicher Forschungsverbund Freiburg/Bad Säckingen, Prof. Dr. Dr. J. Bengel, Prof. Dr. G. Lucius-Hoene
- Kontaktstelle für Selbsthilfegruppen, Dipl. Psych. J. Matzat
- Lehrbereich Allgemeinmedizin, Universität Freiburg, Prof. Dr. W. Niebling;
- Abteilung Allgemeinmedizin, Universität Marburg, Prof. Dr. N. Donner-Banzhoff;
- Ottawa Health Research Institute (OHRI), Canada, Prof. Dr. A. O'Connor
- Department of Primary Care and Public Health, Cardiff University,Wales (UK), Prof. Dr. G. Elwyn
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