Social Networks and Chronic and Rare Diseases
This area aims at analysing the use of social networks in the area of chronic pain, rare diseases and disability, both by patients and family members, and professionals.
Projects
MOMENT: Metaphors of serious mental disorder. Analysis of the discourse of affected individuals and mental health professionals (2018-2021)
Funding: Spanish Ministry of Economy, Industry and Competitiveness, National Program for Research, Development and Innovation Focused on Society’s Challenges (FFI2017-86969-R).
Objective: Transfer of linguistic knowledge to the field of mental health as well as to the fields of care and health and social policy. http://blogs.uoc.edu/mentalhealthmetaphors/
Team: Marta Coll-Florit (PI) (Grial-UOC), Salvador Climent (Grial-UOC), Eulàlia Hernández (PSiNET), Asun Pié (CareNet-UOC), Martín Correa-Urquiza (URV).
JUNTS. Overcoming barriers and promoting socio-health literacy: intervention difficulties in understanding information and documentation addressed to families of children affected by rare diseases (2016-2018)
Funding: Recercaixa (215ACUP 00187).
Objective: Identification of communication problems that hinder the understanding of medical information addressed to families of children with rare diseases. Development of protocols and an a technological support to foster health literacy. https://portal.upf.edu/web/medicina_comunicacio
Team: Manuel Armayones (PI) (PSiNET UOC) and Rosa Estopà (PI)(UPF), Modesta Pousada and Beni Gómez-Zúñiga (PSiNET) and Group IULATerm UPF.
EPACIBARD METHODOLOGY. Epatients producing collaborative intelligence in the area of rare diseases (2013-2014)
Funding: Crowdfounding.
Objective: Creation of a conceptual model of participative research to act as a catalyser for biomedical, psychological and social research in the area of rare diseases.
Team: Manuel Armayones (PI) (PSiNET), Beni Gómez-Zúñiga and Modesta Pousada (PSiNET), Javier de la Fuente (UB), Gerardo Ontiveros, Mercedes Serrano and Begonya Nafría (Hospital Sant Joan de Déu, Bcn).
APTIC. Patients’ organizations and ICP (2008-2014)
Funding: (IN3-UOC and TICSalut Foundation).
Objective: Analysis of the needs of Patients’ Organisations with regard to ICT tools, and the creation of a social network (APTIC) as a response.
Team: Manuel Armayones (PI) and Eulàlia Hernández (PI) (PSiNET), Beni Gómez-Zúñiga, Noemí Guillamón (PSiNET), Gerardo Ontiveros, Carlos Sánchez-Bocanegra (Junta de Andalucía), Anna Bosque and Begonya Nafría (Hospital Sant Joan de Déu, Bcn).