Social networks and chronic and rare diseases

PATIENTS’ ORGANIZATIONS AND ICT (APTIC)

2008-2014 – Universitat Oberta de Catalunya, Hospital Sant Joan de Déu, Fundació TICSalut-Departament de Salut de la Generalitat de Catalunya.

Analysis of the needs of Patients’ Organisations with regard to ICT tools, and the creation of a social network (APTIC) as a response.

See research area

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 Espai d’Associacions (Space for Associations) of the Sant Joan de Déu Hospital in Barcelona, the network is directed toward professionals and caregivers of children with chronic diseases in order to offer an ICT tool that contributes to improving the healthcare processes (and with them the perception of empowerment, self-efficacy and social support), both from a healthcare point of view and from the perspective of patient associations.

With the philosophy of Web 2.0, APTIC is developed as free software and stimulates the exchange and joint creation of knowledge and resources among families, patient associations, the Espai d’Associacions of the Hospital Sant Joan de Déu and the UOC.

Among the differential traits of APTIC —which assure its success compared to social networks of an open and commercial nature— we highlight:

  • The use of free software (Elgg) in the design, which makes it possible to set up an adequate social network to meet the needs of users, at both a structural level and in terms of resources. This use led to designing a network that fits the demands of users, thanks to a previous phase of interaction and analysis.
  • Promotion of the platform by a community manager, in charge of providing training and information about the network’s functioning and guidance in the use of its tools, fomenting participation, identifying elements to improve, etc.

Thus, APTIC has been a useful source of data and information for research in the field of eHealth and, at the same time, an excellent healthcare tool.

UP

TEAM

UP

MATERIALS

Appearances in the media:

News about APTIC on the Barcelona Televisió (BTV) information program.

Interview with Manuel Armayones about APTIC at the Health 2.0 event at the University of Deusto.

Factsheet about APTIC on the web site of the Foundation TicSalut, Health Department, Catalonian Government.

Interview about APTIC on the Cluster One blog. 25 October 2010.

Presentations:

Redes colaborativas de personas con enfermedades crónicas: experiencias aprendidas y lecciones de futuro. III Congreso de Crónicos, 19-20 mayo 2011, Sant Sebastián.

Featured publications:

Hernández-Encuentra E, Gómez-Zúñiga B, Guillamón N, Boixadós M & Armayones M (2014). Analysis of Patient Organizations? needs and ICT use -The APTIC project in Spain to develop an online collaborative social network. Health Expectations. doi: 10.1111/hex.12181.

Armayones, M., Hernàndez, E., Gómez, B. & Guillamon, N. (2012). APTIC. Una Red Social para familiares de niños y niñas con enfermedades y condiciones crónicas. [APTIC. A social network for parents of children living with chronic conditions]. In Balaguer, F., Peña, I. Acción comunitaria y redes sociales. Barcelona: Editorial Graó (pp. 100-115). ISBN. 978-84-9980-449-1.

Armayones, M., Bosque, A., Gómez, B., Guillamon, N., Hernández, E., Nafría, B., Ontiveros, G. & Pousada, M. (2012). APTIC: creant xarxa des d’una xarxa social. [APTIC: networking from a social network]. Comunicación presentada en la X Jornada del Forum Català d’Informació i Salut (Forum CIS). Barcelona, 18-20 abril 2012.

Gómez-Zuñiga, B., Nafría, B., Guillamón, N., Armayones, M., Hernández-Encuentra, E., Ontiveros, G. & Bosque, A. (2011). APTIC, developing a social network: from 2.0 to social media tools. Comunicación presentada en el HICT2011, organizado por la UOC, el IWK Health Center de Halifax (Canadá) y Labpsitec de Valencia. Barcelona, 08-11 marzo 2011.

Armayones, M., Gómez-Zúñiga, B., Hernández, E., Guillamón, N., Nafría, B., Ontiveros, G., Bosque, A. & Pousada, M. (2011) APTIC, developing a social network for e-pacients: lesson learned. Comunicación presentada en Medicine 2.0, World Congress on Social Media, Mobile Apps, Internet / Web 2.0. Stanford University, septiembre 2011.

Armayones M, Hernandez-Encuentra E, Gomez-Zuniga B, Guillamón N, Ontiveros G, Bosque A, et al (2010). APTIC: a social network to improve the quality of life of members of patients’ associations. Orphanet Journal of Rare Diseases. 2010; 5 (Suppl 1), p. 27. doi:10.1186/1750-1172-5-S1-P27.

Guillamón, N., Armayones, M., Hernández, E., Gómez, B. (2010). The role of patient organizations in participatory medicine: can virtual health communities help participatory medicine accomplish its objectives? Journal of Participatory Medicine, 2. doi: 10.1186/1750-1172-5-S1-P27.

Guillamón, N., Gómez, B., Armayones, M., Hernández, E., Ontiveros, G., Nafría, B. & Bosque, A. (2010). APTIC: a social network to improve the quality of life of members of patient’s associations. Póster presentado en la I Jornada r+d+i en TIC y Salut en Catalunya. Fundació TicSalut y el Parc Científic i Tecnològic de la Universitat de Girona. Girona, 13 mayo 2010.

Hernández, E.; Armayones, M.; Gómez, B.; Guillamon, N.; Ontiveros, G.; Bosque, A. & Nafría, B. (2010). Projecte APTIC. Associacions de pacients i malalts i TIC. [APTIC Project. Patients’ Organisations and ICT]. Comunicación presentada en Bdigital Global Congress. Barcelona, 17-20 abril 2010.

Hernández-Encuentra, E; Gómez-Zúñiga, B; Guillamón, N; armayones, M; Nafría, B; Ontiveros, G & Bosque, A. (2010). APTIC; a social network to meet the needs of families and professionals around chronic conditions. Comunicación presentada en la International Conference: Transforming health systems for chronic patients. The challenge of implementation. Organizado per O+berri. Basque Institute for healthcare innovation. Bilbao, 02-03 junio 2010.

UP

COLLABORATIONS

Espai d’Associacions (Space for Associations) of the Hospital Maternoinfantil Sant Joan de Déu de Barcelona, Fundació TicSalut from Generalitat de Catalunya, Centre for Global eHealth Innovation, and Fundación para la eSalud (FeSalud).

UP