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. SETTING AND PARTICIPANTS: 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. CONCLUSION: The discussion of the data includes key elements of designing an online collaborative social network and reflections on health services provided.