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INESC TEC develops social network for cancer patients
FalarSobreCancro.org is the name of the social network that was created for cancer patients to share experiences and information. The website is public and free, and the goal is to provide a platform for the cancer patient community to interact, namely patients, family members, friends, healthcare professionals, researchers and volunteers.
FalarSobreCancro.org is a pioneer platform that has already been presented to patients of the Portuguese Institute of Oncology, in Porto (IPO-Porto)
Social Network has over 2,000 registered members
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 “Boletim Clínico” (Clinical Bulletin), 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.
Project is being developed by INESC TEC’s High Assurance Software Laboratory
According to Rui Oliveira, Member of the Board of INESC TEC, “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. “What we want with the FalarSobreCancro.org is not only to provide a network where people struggling with this illness can contact with each other, but also to provide access to healthcare professionals who can answer questions and clarify the authenticity of some issues”, Rui Oliveira stated.
How was the project born?
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 partners
The main partner of the project is IPO-Porto which, with its professionals and patients, is developing a 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.
The community network is being developed by a team of researchers from the IPCA, the University of Minho and INESC TEC.
President of IPO-Porto stresses the importance of the clinical bulletin
According to Laranja Pontes “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”, the President of the IPO-Porto concludes.
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 INESC TEC team working on this platform for various months is composed of Paula Rodrigues, project manager, Francisco Neves, Rogério Pontes and André Costa, researchers at HASLab.
Because the project is in its early stages, the team is open to suggestions and other types of developments. As such, in the future the HASLab researcher may work with other INESC TEC Centres for an even greater success.
The INESC
TEC researcher mentioned in this news piece is associated with INESC TEC and UMinho.
INESC TEC, January 2016