DIPEx (Database of individual Patient Experiences) – DIPEx.ch

Health Experiences Overview

The Swiss Database of Individual Patient Experiences provides a systematic and methodological collection of individual interviews about real-life experiences with health issues such as Alzheimer's disease 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 the UK. DIPEx works with a well-established and rigorous qualitative research methodology developed by the University of Oxford in 2000, 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 the lack of patient representation and to include low-threshold exposure to patient experience in teaching materials that complement bedside teaching. We provide opportunities for interprofessional and interdisciplinary collaboration with other health professionals and aim at stimulating and establishing the dialogue between health and the arts and design within the Medical Humanities.

Swiss DIPEx Team: 

• Nikola Biller-Andorno: Project leader
• Andrea Glässel: DIPEx Module Multiple Sclerosis (MS) & Neurocritical Care
• Beatrix Göcking: DIPEx Module Neurocritical Care
• Andrea Radvanszky: DIPEx Modules Alzheimer & Dementia & Young hemato-oncological patients
• Bettina Schwind: DIPEx Module Chronic pain
• Corine Mouton-Dorey: DIPEx Modules COVID-19, ICU, MS, Parkinson, and more
• Giovanni Spitale: DIPEx Module COVID-19 & Data Management of all modules
• Sebastian Wäscher: DIPEx Module Rare Diseases

Former researchers:

• Manya Hendriks – DIPEx Module Alzheimer & Dementia
• Yolanda Chacon - DIPEx Module Parkinson
• Susanne Jöbges -DIPEx Module Intensive Care Management (ICU)
• Mirriam Tyebally - DIPEx Module Pregnancy and prenatal testing
• Karin Seiler - With us about us

Financed by: various: IBME / UZH and others

Duration: 2017 – ongoing

DIPEx Switzerland
DIPEx International

Current research projects and modules: 

• Autonomy and relations: investigating the role of shared decision making in young hemato-oncological patients.
• Chronic Pain: Everyday experiences of an invisible disability
• Patients and Family Caregivers Illness Experience of Alzheimer’s: A Qualitative Study and Online Platform for Disseminating Knowledge on Alzheimer to the Public
• Living with a rare disease. Patients’ and families’ experiences
• Individual experiences with pandemic SARS-CoV2 (COVID-19)
• 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.
• Pregnancy and Prenatal testing 
• With us. About us. Patient narratives as co-production - a contribution to research on participation.

ZHAW-Partner DIPEx Switzerland