Sergio Amadeu da Silveira - Cidadania e Redes Digitais

eng
c i t i z e n s h i p a n d d i g i t a l n e t w o r k s
Communities of interest and peripheral knowledge
These communities are formed by patients suffering from diseases, and by
acquaintances, friends, families of those so-called patients. They are people who
have decided, in a certain moment, in face of the fragmentation of the medical
knowledge and the non-indifferent interest of the pharmaceutical laboratories, to
take control of their own disease and start exchanging experiences and documents,
studying unorthodox hypotheses, introducing elements foreign to the traditional
therapies. Antonio Lafuente (2007) studied in deep this dynamic, and in the work
El carnaval de la tecnociencia he states that these movements have transformed the
manner of understanding the relationship between physicians and patients. They
force physicians to listen to patients, since they have now an unprecedented arsenal
of knowledge. Many times, the interest communities themselves create new catalogs
of nuisances, syndromes or symptoms related to a disease or to a family of diseases.
In addition to that, they promote medical studies with a statistic universe of unthinkable
magnitude for any traditional laboratory or medical institution. By extension,
these communities are substantially changing the relationship of the citizens
with science, and of science with the established powers (Lafuente, 2007:6).
One model of these communities is The Brain Talk Communities 7 , currently
formed by over 300 online discussion groups on neurological disturbances, including
Alzheimer, Parkinson, Multiple Sclerosis, Huntington’s disease etc. It was initially
associated with the Massachusetts General Hospital, but it is currently independently
managed by a non-profit organization. It gathers interested people from the
whole world, and is consulted by about four million people, regularly. Hoch and
Ferguson (2005) demonstrated that the information flowing through its web pages
is of high quality and reliability. Only one percent of the messages had erroneous
or obsolete content, and almost three quarters of it discussed symptoms, analyzed
alternative therapies, showed little known secondary effects and explored peculiar
aspects of individual processes. Far from being a tool of hierarchized information
dissemination and transmitted through a top-down scheme, the Web became a form
of life to many e-patients who interact through the network.
Thus, a double transformation is produced in the institutional ambience that
7. See www.braintalk.org.
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