Draft version of the “spetspatient” framework

Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund.


In the Merriam-Webster dictionary, ‘advocacy’ is defined as: “the act or process of supporting a cause or proposal”. The same source defines ‘activism’ as: “a doctrine or practice that emphasizes direct vigorous action especially in support of or opposition to one side of a controversial issue”. This post is a follow-up to a pre-congress course on advocacy and activism that was given at the 5th World Parkinson Congress (WPC) in Kyoto June 4-7 2019 (Scott Duncan, Raphael, et al. 2019). The focus of the course was on the more action-oriented concept of activism and the course was based on research from Karolinska Institutet in Stockholm, Sweden. The research has resulted in a framework outlining some of the different roles patients can take when dealing with their health issues. The purpose of this post is to provide a background for and description of the framework as well as outline some of the ways it can be used.

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