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A social network has been created for cancer patients to share experiences
FalarSobreCancro.org is the name of the social network created for cancer patients to share experiences. The website is public and free, and provides a platform for the cancer community to interact, including patients, family members, friends, healthcare professionals, researchers, and volunteers.
FalarSobreCancro.org has been presented to patients of the Portuguese Institute of Oncology in Porto (IPO-Porto) and now has over 2,000 registered members who can share information through articles and comments.
The platform also contains a Clinical Bulletin (the “Boletim Clínico”), managed by the IPO-Porto, which features clinical and scientific contents whose goal is to inform and educate people.
To access the network, users need to register. After registering, it is possible to see all members in the community and their activity, as well as interact with thematic groups (such as alternative medicine, breast cancer), and follow people.
According to Rui Oliveira, Member of the Board of INESC TEC and professor at University of Minho who led the development of the platform, “cancer is the second biggest cause of death in Portugal and what we are seeing now is that some people actually take advantage of the patients’ despair and pain, something which is exacerbated by the amount of unverified information available online.”
Together with Nuno Martins, professor at the Polytechnic Institute of Cávado and Ave (IPCA), Rui Oliveira is responsible for developing this social network. The project was born precisely as part of Nuno Martins’s PhD thesis, who studied how citizens and institutions communicate in the fight against cancer, through participatory online media. The work has now reached a new stage with the FalarSobreCancro.org, where the goal was to study a practical solution that helps the cancer community in the fight against the illness.
The main partner of the project is IPO-Porto which, with its professionals and patients, is developing continuous and cooperative work in order to study, test and evaluate solutions for this web platform that can be of use to citizens who are directly or indirectly related to cancer.
According to Laranja Pontes, President of the IPO-Porto, “in this social network, we use the Boletim Clínico (clinical bulletin) to provide scientific information using a language that is accessible to everyone. We are establishing yet another communication channel with the cancer community, following the evolution of digital communications. We are available to provide information that will keep our audience informed.”
Assunção Tavares, a psychiatrist at IPO-Porto’s Psycho-oncology Service, is surprised with the impact that the platform is having on the community: “we are pleasantly surprised with these high numbers and with the interaction of the cancer community in this first stage of the project. The platform keeps growing and growing, which requires an extra effort from our professionals in the clinical bulletin.”
IPO-Porto is only responsible for the contents in the clinical bulletin, signed by the professionals in the institution. The institution will not be monitoring or mediating the users’ posts on the platform.
The network is being developed by a team of researchers of the Polytechnic Institute of Cávado and Ave (IPCA), University of Minho and INESC TEC.
For more information:
Joana Desport Coelho
Communication Service
INESC TEC
Campus da FEUP
Rua Dr Roberto Frias
4200-465 Porto
Portugal
T +351 22 209 4018
M +351 934 224 331
Porto, 21 January 2016
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