Most people agree that patients should be put centre stage in healthcare. How this should be done is an open question. In practice a lot of different methods are used. This choice of methods is not without consequence as different methods produce different patient perspectives. A source that could be used much more are the stories of patients themselves. Patients have a lot to say about their experiences, about their treatment, about the impact of their condition on their daily lives, about their experiences with healthcare professionals and the broader healthcare system. Gaining access to these stories is not easy and requires large time investments. Luckily many patients (or people in their network) take the time to write their stories.
From January 2019 onwards the Erasmus University Rotterdam is in possession of a collection of about 4500 of these written patient stories. They have been collected in recent years by medical sociologist Coleta Platenkamp of the Stichting CCC and cover a large diversity of conditions, themes and experiences. The department of Health Care Governance of Erasmus School of Health Policy & Management will extent the collection and its website. In light of the transfer of the collection and to highlight its potential use we organized the symposium Think Big! Towards Patient Sciences (Denk Groot! Naar Patiëntwetenschappen).
During the symposium we reflected on what the Stichting CCC and especially Coleta Platenkamp has accomplished, including collecting thousands of patient stories, describing them on the website, using them in education of different universities, using them in research and forming a network of experts by experience, researchers, teachers and policy makers. After this Coleta put forward her dream of developing patient sciences: the development of a systematic and integrated scientific research program in which the experiences, sense-making, needs, wishes and possibilities of patients are put centre stage, with the goal of developing knowledge for education, healthcare, policy, experiential experts and patient activism. Next, Gaston Remmers, director of the Stichting Mijn Data Onze Gezondheidszorg (My Data, Our Healthcare) showed what patient sciences could look like when patients themselves become leading in doing scientific research. After this there was time for reflection in two sessions on how patient stories can play a role in policy-making, using examples of the National Health Care Institute and the Health and Youth Care Inspectorate, and in scientific research using examples of a study into the experiences of elderly informal carers and parents of a child with a mental disability .
We look back on a fruitful symposium which showed a lot of enthusiasm for using the collection for research, education and policy-making. The coming years we will not only focus on extending the collection but also on increasingly using it in our research and education at ESHPM and where possible the medical faculty, in education for nurses and other care related educational programs, for it is crucial that policy-makers, managers and professionals in healthcare learn to see the world through the patients’ eyes. Of course we do not want to do this on our own, but within a network of interested patients, researchers, teachers and policy-makers. Together towards patient sciences!