DIPEx: Database of Individual Patient Experiences

Project Description

The Swiss Database of Individual Patient Experiences provides a systematic and methodologically collection of individual interviews about real-life experiences with health issues as Alzheimer diseases or multiple sclerosis.

DIPEx Switzerland is a group of researchers from the Institute of Biomedical Ethics and History of Medicine (University of Zurich) and the Zurich University of Applied Sciences – School of Health Professions (ZHAW). The project is part of the international DIPEx network with 14 countries, led by UK. DIPEx works with a well-established and rigorous qualitative research methodology developed by the University of Oxford in 2000, and which is documented in the Health Experience Research Group (HERG) manual. This qualitative study is based on narrative and semi-structured interviews. Video- and/or audio-or text sequences will be presented online.
We conduct narrative interview studies of people’s experiences of health issues and provide resources for information and support that are freely available for patients, family members, clinicians in training as well as teachers and researchers on dipex.ch. The project aims at harnessing the power of patient voices to stimulate improvement. A systematic collection of evidence offers the chance to remedy lack of patient representation and to include low threshold exposure to patient experience into teaching materials that complement bedside teaching. We provide opportunities for interprofessional and interdisciplinary collaboration with other health professionals and aim at stimulating and establish the dialogue between health and the arts and design within the Medical Humanities.

Publications

Publications are usually associated to one of the research projects within the Project.

Drewniak D, Glässel A, Hodel M, Biller-Andorno N. Risks and Benefits of Web-Based Patient Narratives: Systematic Review. J Med Internet Res. 2020;22(3):e15772. Published 2020 Mar 26.

Projects

• Individual experiences with pandemic SARS-CoV2 (COVID-19)
• Patients and Family Caregivers Illness Experience of Alzheimer’s: A Qualitative Study and Online Platform for Disseminating Knowledge on Alzheimer to the Public
• Chronic Pain: Everyday experiences of an invisible disability.
• Talking About Life with Multiple Sclerosis. A Qualitative Study of Patient Experiences Development of DIPEx module MS.
• Talking About: self-determination and intensive care A Qualitative Study of Patient Experiences Development of DIPEx module: CMI.
• The Psychosocial Effects of Deep Brain Stimulation (DBS) and the Duodopa Pump: A Comparative Study for Parkinson’s Disease.
• Autonomy and relations: investigating the role of shared decision making in young hemato-oncological patients.