HHH Column: Grasping ‘the patient’s view’ in patient magazines
The HHH column is a monthly blog in which History, Health & Healing members share their thoughts on research, current affairs, or anything related to medical history. Each edition is written by a different member — in due time, we hope to give everyone the opportunity to contribute. This month, the floor is for Nele Beyens, medical historian specialising in the history of healthcare, biographical research and the patient’s perspective. This column focuses on the latter topic, in which Nele explores and showcases patient magazines as historical sources.
Grasping ‘the patient’s view’ in patient magazines
By Nele Beyens
Looking at trends in political history, it is clear that the last three decades of the 20th century have been discovered as subject of study by Dutch historians. Within medical history this turn has been somewhat less obvious thus far, but luckily, there are already some fascinating studies available about the developments in health care and medicine in the late 20th century (and even early 21st century), presenting a very dynamic medical culture at the time.[1] Think about developments as the emergence of Evidence-Based Medicine and Lifestyle Medicine, important break throughs in regard to medical ethical issues, as well as the introduction of principles as Shared Decision Making and a general rising awareness of the importance of patient participation in various domains of health care.
For a while now, as a medical historian, I have been focusing on the late 20th century, and along the way I discovered the phenomenon of the ‘patient magazine’ as a rich and intriguing type of historical source material for that timeframe. Thinking about todays’ examples of patient magazines you might imagine some professionally edited and designed glossy, but that’s not exactly what I am talking about. I am talking about their significantly less professionally produced predecessors that were distributed by many of the newly emerging patient organisations in the 1970s, 1980s and early 1990s. Of course, some patient organisations have a longer history – the organisation for people with diabetes[2] is an important example in this regard – but most only arose somewhere in the last decades of the 20th century. That is certainly the case for the patient organisations I am currently focusing on, those related to various types of cancer.
Grasping ‘the patient’s view’, it’s something Roy Porter already called for in 1985.[3] Still, often it remains a challenge. Although we cannot be so naïve to assume that the illness stories in patient magazines equal “the voice of the patient”, these early magazines – generally written and composed by patients, often stencilled, folded, stapled and stamped at a kitchen table – allow us to come pretty close. At least, close to a certain group of patients, namely those who longed for a community of fellow sufferers – ‘lotgenoten’ in Dutch – and wished to share experiences.
Analysing the form and content of patient magazines of several Dutch patient organisations relating to cancer it struck me how much of the illness stories, meeting reports and interviews with fellow patients in these magazines deal with illness-related topics outside the realm of medicine. This concerns explorations into alternative types of treatment, but mostly it concerns the (deceptively) simple question ‘How do I live with this disease?’ Sharing experiences meant not only telling each other about the emotional upheaval caused by a terrifying diagnosis or about the many hardships of undergoing – sometimes frankly brutal – treatment. It also meant talking about the challenges their illness brought to their daily life, to their familial status or their position at work. Issues that were – at the time – hardly addressed by medical professionals.
As such, patient organisations lived by the idea that they brought something to the table the medical profession did not, and many of them really cultivated the idea of being a community of ‘lotgenoten’ helping each other in a unique way. Apart from recurring elements as organizing peer contact, and providing relevant medical information, the way this helping each other took shape was different for each organization and for each type of cancer. Within the Kahler Group for example – an organisation for people suffering from Kahler’s disease, an uncommon type of blood cancer – this helping each other took a very practical turn.[4] At the end of the 1980s, seemingly out of nowhere, members of the group started to send in letters or short articles explaining aids and appliances – often created by loved ones – that helped to ease the back pain many patients with Kahler’s disease suffered from. Think about self-designed corsets or special chair constructions. This might seem trivial but the but the letters actually tell us a lot about the illness experience of Kahler’s patients in the personal and familial sphere.
Within Olijf, an organisation for women suffering from gynaecological cancer, helping each other was less tangible.[5] Here we see a – probably rather unintentional – project of women trying to make sense of their illness experience by transforming it into something worthwhile, mainly by being there for each other and by providing understanding. In and through the magazine a notion of patienthood was developed – based on the idea of a of mutually understood experience – in which what was essentially a very unpleasant illness experience was turned into a meaningful (and therefore more tolerable) one.
I am certainly not the only historian who has discovered patient magazines as valuable historical source material. In various places all over Europe colleagues are currently studying such magazines, which led to many interesting presentations at the latest conference of the EAHMH (Berlin, August 2025).[6] I for one cannot wait to see the (published) results of all this research. But in the meantime, I am going to delve a bit further into the magazine Olijf, trying to establish how exactly the women involved understood and experienced ‘meaningful patienthood’.
[1] See for example: Timo Bolt, A Doctor’s order. The Dutch case of Evidence-Based Medicine (1970-2015) (Antwerpen/Apeldoorn 2015) and Irene Geerts, Family matters. The rise of the Dutch family movement in mental health care, 1960-2000 (Proefschrift Open Universiteit 2024).
[2] Floor Haalboom, ‘Sugar-sick yet healthy: changing concepts of disease in the Dutch Diabetic Association (1945-1970)’, Social History of Medicine 20 (2023) 20, 1-26.
[3] Roy Porter, ‘The patient’s view: doing medical history from below’, Theory and Society 14 (1985) 2, 175-198.
[4] Merg and Been, the patient magazine distributed by the Contactgroep Kahler Patiënten.
[5] Olijf’s patient magazine was also called Olijf (currently Olijfblad).
[6] I would like to mention the various PhD-projects that are part of the ERC funded project about the emergence of patient organisations and their relationship to medical expertise run by Ilva Söderfeldt from Upssala University, as well as the PhD-project of Tim Debroyer at the KU Leuven.