Ylva Söderfeldt on the Societal Role of Diabetes Associations

“Patient associations comprise a large and important social movement. They have often been politically influential and important actors in the field of medicine. Existing accounts often claim these associations to have emerged in conjunction with the new social movements of the 1960s, but we know that several patient associations were actually formed as early as the late 1800s.”

Ylva Söderfeldt is a Docent and Associate Professor in History of Science and Ideas. She is also Director for the Centre for Medical Humanities at Uppsala University. Recently, she received an internationally sought-after research grant of 1,5 million euro, about 15,5 million SEK, from the EU-associated European Research Council (ERC). She will begin by creating a research team of historians and data scientists to explore the long history of patient associations. The study covers the whole of the 1900s in four different countries – Sweden, Germany, France, and the United Kingdom.

“This is a medicine and history project. I am interested to see how the broad notions of diseases have been affected by patients organizing around them. How does it affect the foundational idea and image of illness and diseases – the way in which they are categorized, classified, and characterised? Our hypothesis is that patient organizations have played a substantial role in these processes. Historians have often looked at the scientific and professional side, but I am interested in seeing how the very people who are categorized have also contributed to the creation of their own categories and filled them with content. For example, what does diabetes mean for a person’s life, and what needs are considered to be central to diabetes patients? Patient associations emerged as a phenomenon during a period of 100 years, in multiple countries, and for several diseases at once. Thanks to the ERC Starting Grant, we can now explore the broad strokes of a historical process that has progressed for a quite some time,” says Ylva Söderfeldt.

The Role of Diabetes Associations

In addition to being the Director for the Centre for Medical Humanities, Ylva Söderfeldt is part of the Uppsala Diabetes Centre network. The two research centres have kept a close dialogue for quite some time, and they plan to collaborate in the future.

“Diabetes plays a huge part in this study because the disease has a special position in the medical history of the 1900s. During this century, chronical diseases gained a much more extensive meaning, both in terms of public health and in the world of medicine.  Diabetes becomes the archetypical, chronic illness – a model for how people think about this type of disease. At this point, patients are expected to deal with the diseases themselves, which may involve rather advanced techniques – in the beginning for example, diabetics get to learn how to use test tubes and Bunsen burners. This changes the patient’s entire role as it no longer means being bound to a hospital bed; a patient is now someone with a job and family who is out in society, equipped with special knowledge of their own disease,” says Ylva Söderfeldt.

The new patient role depends upon communication. Doctors no longer have the same overview of their diabetes patients who, in turn, must assimilate information about everything from lifestyles to the proper treatment of medicines. Patient associations fulfil the new communication needs and diabetes associations are among the first. The latter also manage to obtain a lot of resources – they are efficient in establishing contacts with the industry and securing funding.

“Diabetes associations were swift, influential, and have proven to be long-lived. Most likely, they have also been very important examples for other patient groups. Still, other chronic diseases are compared to diabetes, which has almost become a sort of goal to some – they want to have as much knowledge about lifestyles and their own treatment as diabetes patients have. Diabetics have a 100-year-old tradition of being their own doctors, which is still noticeable. For example, the biohacking movement has become rather widespread – people manipulate their pumps and create their own insulin in home laboratories. This is derivative of a century old practice of ‘do-it-yourself’ medicine which is quite exciting,” says Ylva Söderfeldt.

What Can We Learn From Patient Associations?

Ylva Söderfeldt hopes that her research will be interesting to those who are engaged in patient organizations today. Above all, she believes that the study may lead to important lessons for the associations themselves as well as for broader society – patient associations have been predecessors in dealing with challenges that are today shared by majority.

“If I experience some strange symptom, I immediately google it to learn more. If I receive a diagnosis, maybe I join a Facebook group and start to exchange knowledge and experiences with others who share my disease. This is very positive – a lot of people get a lot out of it. On the other hand, we are now facing some massive challenges. At the moment, a very current issue concerns disinformation regarding medicine and health, not least during the Corona pandemic. This is something that patient associations have handled for more than a century. As early as the very beginning, patient associations needed to decide which doctors and experts to build alliances with. Which messages should they filter and disseminate? Patient associations had to be selective and make decisions. They have a 100-year-old experience of living in a self-administered popular medicine information flow – the very same kind of information flow that we all share today.”

Anton Nyström

Photograph: Daniel Naylor (modified)

Read more about the ERC Starting Grant