“The idea that patients should be the central focus of health care is something most of us can agree on. But how this should be done is another story. In practice, many different methods are used that all paint a different picture of the patient. One source that needs to be used much more frequently is the stories of the patients themselves. Patients have much to tell about their experiences with their disorder, the treatments they’ve undergone, how the disorder plays a role in their lives, their experiences with health care providers, and the ‘health care system’ in a broader sense. But getting access to these stories is often difficult and time-consuming. Fortunately, many patients (or their informal caregivers) take the time to write down their stories. These personal accounts of patients’ experiences have by now established themselves as a distinct genre in writing.
From January, Erasmus University will have approximately 5,000 of such personal accounts of patients’ experiences. They have been collected over the past few years by medical sociologist Coleta Platenkamp. The stories comprise a very broad range of disorders, themes and experiences. The collection is administered and by the HCG research group, and the group will further expand the collection as well. It also maintains the websiteOpens external of the collection. On 14 December we are organising a symposiumOpens external to mark the occasion of the transfer and to show some of the ways the collection can be used.
During the symposium we will show the value of the collection for education and research. One example of this is presentations of dissertation projects carried out using the collection. Research results on informal carers will also be presented. This research was conducted in part through using the collection. We will also focus our attention on the role of patient experiences in policy and regulation, particularly in decision-making by the National Health Care Institute, and with regulatory activities carried out by the Inspectorate for Health and Youth Care (IGJ).
In the coming years we will not only further expand the collection, it will also be increasingly used in ESHPM’s research and education. Where possible, it will also be used by the faculty of medicine and in the nursing programmes. After all, it’s crucial that managers and health care providers learn to see things from the patient’s perspective. And it’s just as crucial that we try to make patients the central focus in research. That’s the path to patient-centred sciences!”