Abstract
The emancipation of patients, their organisation and their participation in medical research and health care policy has expanded tremendously. With these successful attempts at participation, however, there is one problem that has so far hardly been articulated and seems to be unrecognized in conceptions of the Patient 2.0 as an informed and active patient. This is the assumption that there is only one kind of knowledge that matters to patients, and to which they can contribute: biomedical knowledge. The paper explores different kinds of knowledge that patients need to engage with in their life with chronic disease, and articulates a particular form of knowledge – patient knowledge – as a form of practical knowledge that patients use and develop in order to relate to medical knowledge and live their daily lives with disease. The analysis of a small webcam community of Dutch patients with an incurable lung disease will show that patients need to translate medical knowledge in order to make it useful to their daily lives, and need to coordinate health care aims with other aims in life. Rather than looking for ways to legitimate their knowledge, patients try out strategies that may work in specific situations, even if temporarily. The paper argues for a better support of the development of patient knowledge and the practices for developing it, rather than singularly equipping people with medical knowledge that is often oriented towards cure rather than towards living with a disease that will not go away.
Highlights
An emotional breast cancer patient on the news is angry about the investment activities of Pink Ribbon, the organization that tries to bring breast cancer to the attention of the public: ‘Stop the pink violence! Instead support research to find out how metastases come into being and how we can prevent these from emerging
In the same news item, a representative of Pink Ribbon responds that the improvement of the quality of life of breast cancer patients instead of research is the aim of the organisation.1 (News broadcast, 16 November 2010)
The angry patient in the quotation represents a paradoxical change in the attitudes of Dutch patient associations towards medical science, those organizations that are dedicated to funding medical research
Summary
The emancipation of patients, their organisation and their participation in medical research and health care policy has expanded tremendously. With these successful attempts at participation, there is one problem that has so far hardly been articulated and seems to be unrecognized in conceptions of the Patient 2.0 as an informed and active patient. This is the assumption that there is only one kind of knowledge that matters to patients, and to which they can contribute: biomedical knowledge.
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
