The role of patient organisations in the production and circulation of knowledge on diseases
As information technology progresses and patient organisations (POs) become more sophisticated, they are actively participating in producing and circulating knowledge on diseases. The EU-funded EPOKS (European patient organizations in knowledge society) project investigated the types and levels of knowledge disseminated by POs, including biomedical, social, judicial or institutional. Through extensive analyses, project partners provided a greater understanding of the similarities and differences between national POs in Ireland, France, Portugal and the United Kingdom that are active in four illness areas: rare and orphan diseases, childbirth issues, Alzheimer’s and attention deficit hyperactivity disorder. They also looked at the form of activism POs develop, and how they impact the governance of health issues. The EPOKS team proposed the concept of ‘evidence-based activism’ in order to understand the development of POs’ health activism and engagement with knowledge, and to capture their role in influencing health issues. Results show that POs that engage in evidence-based activism exhibit four main characteristics. First, they are concerned with the framing of specific issues related to their condition and finding concrete answers. It is their engagement with knowledge that puts them in a position to raise and act on issues. Second, POs collect and confront experiential and credentialed knowledge to understand their situation for themselves and their interlocutors. Third, they develop alliances with experts. These are networks with relevant expertise that participate in a common policy initiative, particularly by investigating the multiple linkages between policy actions and their outcomes. Lastly, POs may establish links with sister organisations and contribute to the generalisation of causes. Researchers found that the same characteristics applied to European POs studied by EPOKS. Evidence-based activism allows them to develop and actively participate in the governance of European health strategies in their illness areas. Thanks to EPOKS, the new-found knowledge emerging from POs will help contribute significantly to a more inclusive and interactive health system.
Keywords
Patient organisations, diseases, health, EPOKS, knowledge society
