Medicine

Patients Share Their Experiences

What do people with multiple sclerosis, dementia or chronic pain go through? What are their experiences of medical practices or hospitals like? What kind of support do they find helpful? The new dipex.ch platform launched by Zurich researchers makes patient experience reports publicly available so that they can be used for research and teaching, to improve healthcare provision, or for self-help.

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For each health topic, between 30 and 50 people are asked about their personal experiences. (Image: istock.com/sturti)

Day in, day out, patients and their loved ones go through a variety of experiences in relation to managing their conditions, accessing medical care and getting the support they need, not to mention the myriad decisions they have to make. “We can learn a lot from patients’ experiences,” says Nikola Biller-Andorno, professor at the UZH Institute of Biomedical Ethics and History of Medicine. “The information is important not just for medical institutions, but also for training and continuing education, research and self-help.”

What are people’s experiences of pregnancy, dementia or Covid-19?

Together with a group of researchers from UZH and the ZHAW Department of Health Sciences, Biller-Andorno has launched a collection of experience reports relating to a variety of conditions and health-related topics: the Database of Individual Patient Experiences (DIPEx). The reports are grouped into thematic modules which are being successively made available online on the website dipex.ch. The subjects cover a range from dementia and Covid-19, chronic pain and mental health, through to pregnancy and prenatal diagnostics.

“Many experience reports on the internet and social media are used for a specific purpose – for example marketing,” says Biller-Andorno. “Our collection, in contrast, is systematically collated, independent, and has a scientific base.” The project subscribes to the HON Code (Health on the Net Code), which prohibits industry sponsoring and thus means the data cannot be influenced or used for marketing purposes.

Promoting self-help and information for patients

Learning from others’ experiences is a proven valuable method of self-help in many respects. Hearing about how other people reacted to a diagnosis, how they manage day-to-day life, and their decision-making process regarding treatment options can help those in similar situations.

The patients’ perspectives presented on the DIPEx platform also serve as an information source to improve healthcare services. “To develop patient-oriented services, quality measures and best-practice models, we need to know what matters to patients during their illness and treatment,” says Biller-Andorno. The experiences of patients and family members can also be used for training and continuing education in medical and healthcare professions, sensitizing young health professionals to the perspectives of patients and relatives.  

Research and development

Last but not least, the project contributes to narrative research in other areas relating to human health. It gives junior researchers not only in medicine or other healthcare disciplines, but also those working in linguistics or medical humanities, for example, the opportunity to establish themselves in a growing interdisciplinary research field. In addition, the experience reports can also be taken into account in the development of practical products, such as tools to help decision-making or care guidelines.

International network and established methodology

Switzerland, together with 14 other countries, is part of the DIPEx international network (https://dipexinternational.org). Other members include the United Kingdom (www.healthtalk.org), Germany (www.krankheitserfahrungen.de), the United States (http://healthexperiencesusa.org) Australia (http://www.healthtalkaustralia.org) and Canada (https://healthexperiences.ca).

DIPEx works with a well-established qualitative research methodology developed at the University of Oxford.  For each health-related topic (module), around 30 to 50 people are asked for their personal experiences. These are collected via narrative, semi-structured interviews which are then systematically evaluated and prepared for publication on the national website, in accordance with relevant ethical and data protection standards.