Why emotions matter

Our work in patient advocacy comes from a human rights-based perspective. The right to health is a fundamental human right[1], and all individuals are entitled to the highest attainable quality of health regardless of their legal or health status or any other characteristics. We also believe and argue throughout our body of work that there is added value in acknowledging the worth of emotions in the work of civil society, notably patient advocacy. We challenge the still pervasive orthopraxy of science that denies the legitimacy of the affective dimension in scientific or political work, and try to demonstrate that the conscious use or deployment of emotional labour is essential for evidence based advocacy.

All of us at Patvocates have started out as patients ourselves, and the path to patient advocacy and advisory has led us through the maze and struggles of living with chronic conditions in various health care systems in Europe.

This work has enriched our lives immensely. It has helped us meet and become friends and colleagues with an incredible range of people from all different walks of life, with whom we have had one thing in common initially: the experience of becoming a “patient”. Thus, we have invested plenty of work into understanding what the concept of patient entails. However, it has turned out that the patient identity is about a lot more, while becoming part of the emerging patient movement in Europe is gradually becoming a political force that needs to be reckoned with.

Patvocates is committed to supporting this development and to empowering patient communities, while supporting other stakeholders, notably regulators, industry and public partners.

One particular and unique factor of our work is its “insider participant” perspective. We have been working as expert patients, peer helpers and educators in the fields of HIV/AIDS, cancer and other diseases for more than 20 years.

This space will provide you with more insight on how patient advocacy can become a driving force in biomedical development, and how it can make a meaningful contribution to society and the economy, too.

[1] http://www.who.int/mediacentre/factsheets/fs323/en/

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