Analysis of patient organizations' needs and ICT use - The APTIC project in Spain to develop an online collaborative social network

Health Expectations

Volumn 18, Issue 6, 2015, Pages 2129-2142

  Hernández Encuentra, Eulàlia ^a   Gómez Zúñiga, Beni ^a   Guillamón, Noemí ^a   Boixadós, Mercè ^a   Armayones, Manuel ^a  

^a UNIVERSITAT OBERTA DE CATALUNYA   (Spain)

Author keywords

ICT; Internet; Online collaborative social network; Paediatric patient organizations; Patient information; Patients' needs

Indexed keywords

ADULT; CONSUMER ORGANIZATION; COOPERATION; HEALTH CARE DELIVERY; HUMAN; INFORMATION DISSEMINATION; INFORMATION PROCESSING; INTERNET; MIDDLE AGED; PEDIATRICS; PROCEDURES; QUESTIONNAIRE; SOCIAL SUPPORT; SPAIN;

ADULT; CONSUMER ORGANIZATIONS; COOPERATIVE BEHAVIOR; DELIVERY OF HEALTH CARE; FOCUS GROUPS; HUMANS; INFORMATION DISSEMINATION; INTERNET; MIDDLE AGED; PEDIATRICS; SOCIAL SUPPORT; SPAIN; SURVEYS AND QUESTIONNAIRES;

EID: 84955172398     PISSN: 13696513     EISSN: 13697625     Source Type: Journal    
DOI: 10.1111/hex.12181     Document Type: Article

References (43)

1. Toiviainen HK, Vuorenkoski LH, Hemminki EK. Patient organizations in Finland: increasing numbers and great variation. Health Expectations, 2010; 13: 221-233. doi:10.1111/j.1369-7625.2008.00499.x.
2. Generalitat de catalunya [Internet]. Directori d'associacions de pacients de Catalunya. Barcelona: Generalitat de Catalunya, Canal Salut, 2012. Available at: http://www20.gencat.cat/portal/site/canalsalut/menuitem.860e901bf7168d2c8bd97260b0c0e1a0/?vgnextoid=c942448c1416c310VgnVCM1000008d0c1e0aRCRD&vgnextchannel=c942448c1416c310VgnVCM1000008d0c1e0aRCRD&vgnextfmt=default, accessed 10 March 2013.
3. Fundación Farmaindustria. El paciente en España. Mapa nacional de asociaciones de pacientes, 2004. Available at: http://www.farmaindustria.es/idc/groups/public/documents/publicaciones/farma_1071.pdf, accessed 8 October 2012.
4. Arrighi E, Blancafort S, Jovell A. La evaluación de la calidad de la asistencia oncológica en España. Barcelona: Fundació Josep Laporte, 2007. Available at: http://www.fbjoseplaporte.org/docs/repositori/080605120842.pdf, accessed 8 October 2012.
5. Groves J. International alliance of patients' organizations perspectives on person-centered medicine. IJIC, 2010; 10. Available at: http://www.ijic.org/index.php/ijic/article/view/481/960, accessed 9 October 2012.
6. Baskerville RL. Investigating information systems with action research. Communications of the AIS, 1999; 2: 4.
7. Jiménez Pernett J, García Gutiérrez JF, Bèss MB. Estructura organizativa de las comunidades virtuales de salud en español: Estudio exploratorio. RevistaeSalud.com, 2009; 5 . Available at: http://www.revistaesalud.com/index.php/revistaesalud/article/view/285/622, accessed 5 October 2012.
8. Van Uden-Kraan CF, Drossaert CHC, Taal E, Shaw BR, Seydel ER, van de Laar MAFJ. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 2008; 18: 405-417. doi:10.1177/1049732307313429.
9. Van Uden-Kraan CF, Drossaert CH, Taal E, Smith WM, Bernelot Moens HJ, Van de Laar MA. Determinants of engagement in face-to-face and online patient support groups. Journal of Medical Internet Research, 2011; 13: e106. doi:10.2196/jmir.1718.
10. Bender JL, Jiménez-Marroquin M-C, Jadad AR. Seeking support on facebook: a content analysis of breast cancer groups. Journal of Medical Internet Research, 2011; 13: e16. doi:10.2196/jmir.1560.
11. Guillamón N, Armayones M, Hernández EE, Gómez-Zúñiga B. The role of patient organizations in participatory medicine: can virtual health communities help participatory medicine accomplish its objectives?. Journal of Participatory Medicine, 2010; 2. Available at: http://www.jopm.org/evidence/reviews/2010/12/29/the-role-of-patient-organizations-in-participatory-medicine-can-virtual-health-communities-help-participatory-medicine-accomplish-its-objectives/print/, accessed 9 October 2012.
12. Nambisan P. Information seeking and social support in online health communities: impact on patients' perceived empathy. Journal of the American Medical Informatics Association, 2010; 2011: 298-304. doi:10.1136/amiajnl000058.
13. Winkelman WJ, Choo CW. Provider-sponsored virtual communities for chronic patients: improving health outcomes through organizational patient-centred knowledge management. Health Expectations, 2003; 6: 352-358. doi 10.1046/j.1369-7625.2003.00237.x.
14. Nambisan P. Evaluating patient experience in online health communities. Health Care Manage R, 2011; 36: 124-133. doi:10.1097/HMR.0b013e3182099f82.
15. Burrows R, Nettleton S, Pleace N, Loader B, Muncer S. Virtual community care? Social policy and the emergence of computer mediated social support. Information, Communication & Society, 2000; 3: 95-121. doi:10.1080/136911800359446.
16. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ, 2004; 328: 1166. doi:10.1136/bmj.328.7449.1166.
17. Eysenbach G. Patient-to-patient communication: support groups and virtual communities consumer health informatics. In: Lewis D, Eysenbach G, Kukafka R, Stavri PZ, Jimison HB (eds) Consumer Health Informatics: Informing Consumers and Improving Health in Care. New York: Springer, 2005: 97-106
18. Rheingold H. La comunidad Virtual. Una sociedad sin fronteras: Gedisa, 1996. 384. p.
19. de SC, Preece J. A framework for analyzing and understanding online communities. Interacting with Computers, 2004; 16: 579-610. doi:10.1016/j.intcom.2003.12.006.
20. Lau AYS, Kwok TMY. Social features in online communities for healthcare consumers - a review. In: Ozok AA, Zaphiris P (eds) Online Communities and Social Computing [Internet]. Berlin: Springer Berlin Heidelberg, 2009: 682-689. Available at: http://www.springerlink.com/index/10.1007/978-3-642-02774-1_73, accesed: 9 October 2012.
21. Eysenbach G. Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. Journal of Medical Internet Research, 2008; 10: e22. doi:10.2196/jmir.1030.
22. Aymé S, Kole A, Groft S. Empowerment of patients: lessons from the rare diseases community. The Lancet, 2008; 371: 2048-2051.doi:10.1016/S0140-6736(08)60875-2.
23. Smith KP, Christakis NA. Social networks and health. Annual Review of Sociology, 2008; 34: 405-429.doi:10.1146/annurev.soc.34.040507.134601.
24. Jadad AR. Are virtual communities good for our health?. BMJ, 2006; 332: 925-926. doi:10.1136/bmj.332.7547.925.
25. Castells M, Lupiáñez F, Saigí F et al. Modernització tecnològica, canvi organitzatiu i serveis als usuaris en el sistema de salut de Catalunya (Research Report, Vol. III) Barcelona: Universitat Oberta de Catalunya, Internet Interdisciplinary Institute (IN3), 2010.
26. Pfizer. Encuesta Pfizer "El rol de Internet en el proceso de consulta de información sobre salut" Available at: http://www.pfizer.es/docs/pdf/noticias/Resultados_encuesta_Pfizer.pdf, accessed 9 October 2012.
27. Cross R, Parker A, Prusak A, Borgatti SP. Knowing what we know: supporting knowledge creation and sharing in social networks. Organizational Dynamics, 2001; 20: 100-120.
28. Fernandez JJ. Hospital líquido. Presented at the Salud 2.0 Euskadi. Bilbao, 2011. Available at: http://www.slideshare.net/jjfernandez/hsjd-hospital-lquido-salud-20-euskadil-bilbao-5-jul-2011, accessed 9 October 2012.
29. Armayones M, Hernández-Encuentra E, Gómez-Zúñiga B et al. APTIC: a social network to improve the quality of life of members of patients' associations. Orphanet Journal of Rare Diseases, 2010; 5(Suppl 1): P27. doi:10.1186/1750-1172-5-S1-P27.
30. Sofaer S. Qualitative methods: what are they and why use them?. International Journal for Quality in Health Care, 2002; 14: 329-336. doi:10.1093/intqhc/14.4.329.
31. Chou W, Hunt YM, Beckjord EB, Moser RP, Hesse BW. Social media use in the United States: implications for health communication. Journal of Medical Internet Research, 2009; 11: e48. Available at: http://www.jmir.org/2009/4/e48/ DOI: 10.2196/jmir.1249, accessed 5 October 2012.
32. Van de Bovenkamp HM, Trappenburg MJ. Government influence on patient organizations. Health Care Analysis, 2010; 19: 329-351. doi:10.1007/s10728-010-0155-7.
33. Mosconi P, Colombo C, Satolli R, Liberati A. PartecipaSalute, an Italian project to involve lay people, patients' associations and scientific-medical representatives in the health debate. Health Expectations, 2006; 10: 194-204. doi:10.1111/j.1369-7625.2007.00444.x.
34. Pagliari C, Sloan D, Gregor P et al. What Is eHealth (4): a scoping exercise to map the field. Journal of Medical Internet Research, 2005; 7: e9. doi:10.2196/jmir.7.1.e9.
35. Nordfeldt S, Johansson C, Carlsson E, Hammersjö J-A. Use of the Internet to search for information in type 1 diabetes children and adolescents: a cross-sectional study. Technology and Health Care, 2005; 13: 67-74.
36. Esquivel A. Accuracy and self correction of information received from an internet breast cancer list: content analysis. BMJ, 2006; 332: 939-942. doi:10.1136/bmj.38753.524201.7C.
37. Fox S. The social life of health information, 2011a [Internet]. Pew Internet & American Life Project; 2011. Available at: http://www.pewinternet.org/Reports/2011/Social-Life-of-Health-Info/Summary-of-Findings.aspx, accessed 5 October 2012.
38. Fox S. Peer-to-peer healthcare [Internet]. Pew Research Center, 2011b. Available at: http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx, accessed 3 January 2013.
39. Ferguson T. E-Patients prefer eGroups to doctors for 10 of 12 aspects of health care. The Ferguson Report, 1999. Available at: http://www.fergusonreport.com/articles/fr039905.htm, accessed 3 January 2013.
40. Baggott R, Forster R. Health consumer and patients' organizations in Europe: towards a comparative analysis. Health Expectations, 2008; 11: 85-94. doi: 10.1111/j.1369-7625.2007.00472.x.
41. Hemminki E, Toiviainen HK, Vuorenkoski L. Co-operation between patient organisations and the drug industry in Finland. Social Science & Medicine, 2010; 70: 1171-1175. doi:10.1016/j.socscimed.2010.01.005.
42. Armstrong N, Hearnshaw H, Powell J, Dale J. Stakeholder perspectives on the development of a virtual clinic for diabetes care: qualitative study. Journal of Medical Internet Research, 2007; 9: e23. . doi:10.2196/jmir.9.3.e23.
43. Kerr C, Murray E, Stevenson F, Gore C, Nazareth I. Internet interventions for long-term conditions: patient and caregiver quality criteria. Journal of Medical Internet Research, 2006; 8: e13. doi:10.2196/jmir.8.3.e13.