title: Analysis of patient organizations' needs and ICT use--The APTIC project in Spain to develop an online collaborative social network.
abstract: BACKGROUND
  The purpose of this first part of the APTIC (Patient Organisations and ICT) project is to design and run an online collaborative social network for paediatric patient organizations (PPOs).
  
  
  OBJECTIVE
  To analyse the needs of PPOs in Spain to identify opportunities to improve health services through the use of ICT.
  
  
  METHODS
  A convenience sample of staff from 35 PPOs (54.68% response rate) participated in a structured online survey and three focus groups (12 PPOs).
  
  
  RESULTS
  Paediatric patient organizations' major needs are to provide accredited and managed information, increase personal support and assistance and promote joint commitment to health care. Moreover, PPOs believe in the Internet's potential to meet their needs and support their activities. Basic limitations to using the Internet are lack of knowledge and resources.
  
  
  CONCLUSIONS
  The discussion of the data includes key elements of designing an online collaborative social network and reflections on health services provided.
authors.affiliation: Research group PSiNET, Internet Interdisciplinary Institute, Universitat Oberta de Catalunya (UOC), Barcelona, Spain.
authors.forename: Eulàlia
authors.initials: E
authors.lastname: Hernández-Encuentra
authors.affiliation: Research group PSiNET, Internet Interdisciplinary Institute, Universitat Oberta de Catalunya (UOC), Barcelona, Spain.
authors.forename: Beni
authors.initials: B
authors.lastname: Gómez-Zúñiga
authors.affiliation: Research group PSiNET, Internet Interdisciplinary Institute, Universitat Oberta de Catalunya (UOC), Barcelona, Spain.
authors.forename: Noemí
authors.initials: N
authors.lastname: Guillamón
authors.affiliation: Research group PSiNET, Internet Interdisciplinary Institute, Universitat Oberta de Catalunya (UOC), Barcelona, Spain.
authors.forename: Mercè
authors.initials: M
authors.lastname: Boixadós
authors.affiliation: Research group PSiNET, Internet Interdisciplinary Institute, Universitat Oberta de Catalunya (UOC), Barcelona, Spain.
authors.forename: Manuel
authors.initials: M
authors.lastname: Armayones
mesh_terms: D000328:Adult; D003255:Consumer Organizations; D003299:Cooperative Behavior; D003695:Delivery of Health Care; D017144:Focus Groups; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D020407:Internet; D008875:Middle Aged; D010372:Pediatrics; D012944:Social Support; D013030:Spain; D011795:Surveys and Questionnaires
keywords: ICT; Internet; online collaborative social network; paediatric patient organizations; patient information; patients' needs