3 May 2019

Tailored patient communities gain ground on social media


Anthropological research indicates that patients seek experienced-based and specialized knowledge on social media like Facebook.

 Help with calculating the calorie value in a cake or a forum to mobilize a common voice.

- When patients are unsure about how they can live with their illness in everyday life they are increasingly using social media to seek inspiration and to find support from other patients, anthropologist Natasja Kingod says, who recently wrote a PhD dissertation about in particular diabetics’ use of patient communities on social media.

Together with the rest of the research group Vital, Department of Anthropology, she is behind the conference ’The Digitally Engaged Patient’ that will take place in June 2019.

When Natasja Kingod in 2015 began researching in patient communities on social media she found three groups for type 1 diabetics. In 2018 she observes almost 20 groups for adult type 1 diabetics alone, and in addition there is also a number of Facebook groups directed at very young diabetics.

- For example, there exists today a group for type 1 diabetics who use insulin pumps and another group for other types of medicin, and then there are different groups for those patients that have different interests in relation to diet and exercise concurrent with diabetes. It has become much more specialized, she says.

Support in daily life with the illness

Some of the groups are relatively large – one Facebook group for patients with a low metabolic rate has for instance 17.000 members, Kingod explains. The patients in these groups receive advice from like-minded.

 - Patient knowledge is experience-based, and it is sought after in everyday life with the illness where the doctor’s knowledge of patients in some ways can be perceived as more general and more on the healthcare system’s own terms, Natasja Kingod says.

Her dissertation is based on ethnographic fieldwork in both offline communities and online Facebook groups over a period of one year. She has followed adult persons with type 1 diabetes and observed their use of Facebook e.g. via smartphones. 

Natasja Kingod: tel. 23 90 74 73