{"id":103100,"date":"2019-09-17T14:13:40","date_gmt":"2019-09-17T12:13:40","guid":{"rendered":"https:\/\/www.erasmusmagazine.nl\/en\/?p=103100"},"modified":"2025-12-19T11:24:28","modified_gmt":"2025-12-19T10:24:28","slug":"if-these-stories-are-actually-heard-they-may-change-health-care","status":"publish","type":"post","link":"https:\/\/www.erasmusmagazine.nl\/en\/2019\/09\/17\/if-these-stories-are-actually-heard-they-may-change-health-care\/","title":{"rendered":"‘If these stories are actually heard, they may change health care’"},"content":{"rendered":"

\u2018The patient must be the centre of attention\u2019 is an oft-quoted slogan in the healthcare system. However, all too often, the focus is not actually on the patient. The Erasmus School of Health Policy and Management (ESPHM) has accepted a special collection of more than 4,500 \u2018patient experience stories\u2019, written by chronically ill people, which may go some way towards bridging the gap between patients and healthcare providers.<\/p>\n

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The collection will be officially presented<\/a> to the public in the University Library\u2019s Leeskabinet (\u2018Reading Cabinet\u2019) this Wednesday.\u00a0Hester van de Bovenkamp, a researcher affiliated with ESHPM, will be looking after the collection. Her own research focuses on patient participation and the representation of patients and regular people in the healthcare system.<\/p>\n

Where is this collection of stories from?<\/strong><\/p>\n

Van de Bovenkamp: \u201cWe got it from Coleta Platenkamp. When she fell ill years ago, she wanted to learn more about her medical condition. Since then she has read more than three thousand books on living with chronic illness. She also collected vlogs and documentaries. Platenkamp believes that these stories contain a lot of useful information for patients, healthcare providers and managers. They are about daily life while being sick, with all its attendant difficulties. The stories also show that being ill and health care are emotional things. The emotional touches in them move the people who read them. At the same time, though, there\u2019s not always room for this in health care. [Coleta] seeks to raise awareness of this, and also to raise the level of patient participation in the decision-making process in the healthcare system, through the Coleta\u2019s Chronische Circus Foundation (CCC) and its website, patientervaringsverhalen.nl<\/a>. That name, the \u2018Chronic Circus\u2019, refers to the stress and chaos involved in chronic illness. Some patients will experience living with a chronic illness, and the treatment that comes with it, as a circus of sorts.\u201d<\/p>\n

How did the collection end up at ESHPM?<\/strong><\/p>\n

\u201cPlatenkamp wanted to retire. Managing the collection takes a lot of time. She is quite ubiquitous in my field of study, so we already knew each other. My manager, Roland Bal, saw a lot of promise in the collection and wanted to accommodate it at ESHPM. So now the 4,500 books can be found in the basement of the University Library, where they can be borrowed by anyone.\u201d<\/p>\n

How could this collection help us improve the healthcare system?<\/strong><\/p>\n

\u201cIt\u2019s a good source of information for both students and researchers. I\u2019ve supervised a few thesis-writing groups whose students studied blogs and vlogs (among other things) about what it\u2019s like to be a young person suffering from diabetes. Or stories by parents who describe what it was like for them to have a baby with Down syndrome.<\/p>\n\n\t

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\n\t\t\u2018Academic literature on management and organisation in the healthcare system is quite far removed from what things are actually like on the work floor\u2019\n\t<\/blockquote>\n\n\t<\/figure>\n\t\t<\/div>\n\t<\/div>\n

\u201cIn addition, we\u2019ve come up with the idea of getting Policy & Management students to read stories as part of their degree programme. Academic literature on management and organisation in the healthcare system is quite far removed from what things are actually like on the work floor. If there is one slogan you\u2019ll hear a lot in the healthcare system, it is that \u2018the patient must be the centre of attention\u2019. Of course, actually focusing on the patient is a different matter altogether. The advantage of those stories is that they show what it\u2019s like to live with a disease, with all the attendant difficulties.\u201d<\/p>\n

Why does this collection merit its own opening ceremony?<\/strong><\/p>\n

\u201cIt\u2019s a collection with a great deal of potential, and it\u2019s great that we\u2019re able to accommodate it at ESHPM. We wish to build a network of researchers, universities and faculties, but also of people in the field: patients, healthcare professionals and policy-makers. Perhaps the stories will be incorporated into the courses taught at Erasmus MC, and The Hague University of Applied Sciences is interested, as well, for its degree in nursing. We are examining how healthcare providers can best take into account the \u2018chronic circus\u2019, the stress and chaos of living with chronic illness. If these stories are actually heard, they may change the way in which we provide health care.\u201d<\/p>\n\n\t

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