Alternative knowledge claims about the risks of copper IUDs and HPV vaccine in the social media era

Today a large amount of information on health and disease is distributed via internet, also in user-directed forums. People seeking medical advice often have access to contradictory information, stemming from official health institutions as well as other actors. Some of this information concerns potential adverse effects of established medical interventions, and knowledge claims starkly contradicting conventional views are sometimes shared.

This study examines two such cases: the alternative knowledge claims about adverse effects of the copper IUD (intrauterine device) and HPV vaccination, which circulate on the internet and have generated subculture-like communities organized in social media forums. The aim is to examine, in a Swedish context and with a focus on social media, (1) the mechanisms behind the alternative knowledge claims about the risks of the copper IUD and the HPV vaccine and (2) what consequences the conflict between alternative and conventional knowledge claims have for patients as well as healthcare professionals.

The study is based on (i) analysis of communication in social media, (ii) interviews with persons influenced by the alternative knowledge claims and with healthcare professionals, and (iii) a survey of the views in the general population. The study would fill a knowledge gap in the quantitatively dominated field that studies health information and the internet, through its qualitative examination of how people relate to various sorts of information. Given that the alternative knowledge claims are relevant foremost to women, the study is guided by an intersectional gender perspective. The copper IUD and HPV vaccination may constitute important factors for women’s reproductive health; hence, the study responds to a societal need for increased knowledge about women’s experiences of or fear that these interventions may put their health at risk. The study will be carried out in dialogue with selected health care actors.