Research areas

SOCIAL NETWORKS AND CHRONIC AND RARE DISEASES

Description and analysis of the use of social networks in the area of chronic and rare diseases, both by patients and family members and by national and international associations.

 SUMMARY

Based on the figure of the ePatient as an active participant in the generation of new knowledge about illness, from this line of research the following activities are carried out:

  • Identification and analysis of the determinants of the active involvement of patients and families in empowerment in facing the illness, adhesion to therapy, and users’ active participation in research on the illness. This is what is called generating collective and collaborative intelligence.
  • Description of the psychosocial variables in families who actively participate in collaborative research projects related to their children’s illness.
  • Analysis of the psychological effects stemming from the participation of parents and caregivers of patients with chronic and rare diseases in the social networks.
  • Study of the ICT use of associations and federations of rare diseases, and especially social networks.

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MATERIALS

Featured publications:

Social networks and rare diseases.

Armayones,M; Requena,S, Gómez-Zúñiga,B; Pousada,M; Bañón A.M (2015). El uso de Facebook en asociaciones españolas de enfermedades raras: ¿cómo y para qué lo utilizan? Manuscrito enviado para su publicación.

Gómez-Zúñiga, B., Pousada, M., Armayones, M., Cutillas, J., Fàbrega, J., Fernández, J.J., García, M.; Pérez-Payarols, J., Vilaseca, M.A. i Serrano, M. (2013). Guía metabólica: beyond disease, towards patients. 12th International Congress of Inborn Errors of Metabolism.

Social networks and diabetes.

Gómez-Zúñiga, B.; Pousada, M.; Hernandez, M. Colberg, S.; Gabarrón, E. i Armayones, M. (2015). The online Big Blue Test for promoting exercise: health, self-efficacy and social support. Telemedicine and e-Health (en prensa).

Social networks and collective intelligence.

Armayones, M.; Gómez-Zúñiga, B.; Pousada, M.; Nafría, B. i Serrano, M. (2013). Collective Intelligence for research in ultra rare diseases. A conceptual model. IV Workshop Technology for Healthcare and Healthy Lifestile.

Serrano, M.; Gómez-Zúñiga, B.; Pousada, M. i Armayones, M. (2012). Collective Intelligence for Rare Diseases. European Conference on Rare Diseases & Orphan Products.

Social networks and suicidal behavior.

Robert, A., Suelves, J. M., Armayones, M., i Ashley, S. (2015). Internet Use and Suicidal Behaviors: Internet as a Threat or Opportunity? Telemedicine Journal and E-Health, the Official Journal of the American Telemedicine Association. doi:10.1089/tmj.2014.0129

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Collaborations

If you are interested in collaborating with this line of research, contact us through the section Do you want to collaborate?

Funding

FEDER observatory of rare diseases (2015-2016). Competitive project financed by the Ministry of Health, Social Services and Equality and the Spanish Federation of Rare Diseases (FEDER). See news.

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SUMMARY Very often, texts generated by heath professionals or assotiations and aimed at patients and famílies can cause cognitive and lingüístic interferences that hinder, or even prevent, correct assimilation. This situation is even more evident in the case of a pediatric rare disease, because o...

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SUMMARY The Social Network APTIC is designed and implemented to meet the needs detected in the initial analysis, and is active from 2009 to 2014. From that moment on, the associations cover the services of APTIC with social networks that have appeared more recently. Created in collaboration with the...

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