From Patient to Expert Through the Internet

Certain developments in the last few years show that the scientific community on one hand, and the patient community on the other hand interprete results of the biomedical research very differently. Patients, formerly often considered "agonising lay people", have become more and more informed and active "experts". The Internet offers access to information and platforms for exchange and discussion of ongoing scientific developments and results. As a result, there is a potential for new role allocation, with scientists seen as "traditional experts" and patients seen as "innovative experts". In this context, lay people may come to the fora and generate argumentative and political power, potentially lessening the ability of biomedical science to set research priorities. The extent to which such phenomena can be observed in internet fora and the function the Internet plays in this context are the subjects of investigation of this project. The investigations focus on the case of Chronic Cerebrospinal Venous Insufficiency (CCSVI) proposed as a new and totally different etiological model for Multiple Sclerosis (MS). This newly proposed hypothesis has been a matter of intense discussion among both "traditional experts" and "innovative experts". There are already interventions based on this model which are currently offered, however such interventions have gained very different acceptance among the scientific and patient communities. The study group comprises of different disciplines, such ase primary care and health research, computer science, and medical statistics. Our aim is to test the use of certain data analysis techniques and their interplay. A subsequent study will pursue the application of our design and methods to other highly debatable issues in biomedical research.