PratenOverGezondheid: a publiclyopen database of health experiences.
Open Research objectives/practices
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Making the outputs of research freely available Using alternative models of publication and peer review.
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Capitalizing on unique open aspects of open educational resources.
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Promoting and facilitating Open Research and Education practices.
Introduction
PratenOverGezondheid.nl (POG, TalkingAboutHealth) is a freely accessible database with patients’ experiences. For the development we use well-established methods of qualitative research, developed by the Health Experiences Research Group of the University of Oxford.
A core component of this methodology is the commitment to making the findings accessible to broad audiences via a freely accessible website. We collect data via face-to-face semi-structured narrative interviews. To ensure that a wide range of experiences and views are captured, we make us of maximum variation sampling. The themes identified during data analysis form the basis for detailed webpages covering every aspect of life described by the interviewees – from diagnosis to treatment decisions and impact on work and family life.
These webpages are illustrated with video, audio and written excerpts from the interviews. The website allows visitors to read about interviewees’ individual stories. The website is intended to serve as a resource for individuals, their relatives and professionals.
Motivation
PratenOverGezondheid.nl. is a freely accessible database of patients’ experiences that is unique in its depth and consistency of a scientifically established research methodology. The initiative allows for comparison across health conditions and with other countries using the same research methodology.
The website disseminates reliable information, based on research, about the experience of living with different health conditions, and aims to inform and support both patients as well as their families. The website brings recognition, connection, hope, understanding, and can help breaking taboos. It also helps with decision-making (e.g. regarding care or seeking help) and provides the language to engage in conversation with the care professionals. Collecting and sharing patients’ experiences contributes to greater awareness of the issue, fulfilling both a social and a medical function. Regarding the social environment, the website provides insight in the world of the patient’s experiences. This insight can help the social environment to provide tailored support to their partner, family member, neighbour or colleague.
The database helps to improve our understanding of personal health experiences for the benefit of patients and families, our community, researchers and the health sector including healthcare professionals and policymakers. Furthermore, the website/database can be used to train health care professionals and for service improvement.
Lessons learned
We aim to include a maximum variation of experiences. In this regard, it is important to take into account the vulnerability of some participants. For example, when we interviewed people with lived experiences of psychosis, the Medical Ethics Committee and we agreed on including only experts by experiences in the sampling of participants which hindered the desired maximum variation. We solved this by conducting a secondary analysis of pseudonymized interviews collected by a mental healthcare organisation and combined these experiences with our interviews. To protect anonymity, the different experiences were transformed into a script performed by actors and filmed. On the website, we clearly distinguish between “real” experiences and filmed experiences.
URLs, references and further information
The website PratenOverGezondheid.nl. is a freely accessible database of patients’ experiences. Until now, we have collected experiences about dementia (patient and caregiver), diabetes type 2, chronic kidney disease, pregnancy and childbirth, informal caregiving and work, Post-COVID syndrome, menstruation and psychosis. Currently, we are working on a project on experiences of postpartum (i.e., first year after giving birth). Url: