Family perspectives on integrated child health information systems

The perspectives of families, and especially parents of children with special health care needs, need to be better understood by the government agencies, health care providers, associations, and information systems vendors that are integrating child health information systems. To date, research on children with special health care needs has not included the perspectives of parents on integrated child health information systems. Interviews were conducted with a limited number of parents of children with special health care needs and a young adult with special health care needs about their perspectives on integrated health information systems needs. The interviews revealed common themes: (1) parents have experienced the benefits of information technology for health care purposes, (2) parents believe integrated health information systems could help to coordinate their children's health care, (3) parents believe information technology can help improve accuracy and timeliness of information, (4) parents of children with special health care needs believe their children's health information should be available to those who need it, but safeguards must be in place, (5) parents believe health information systems can improve health care, but it is not the highest priority health care issue for them, and (6) parents believe that their involvement in issues related to children with special health care needs, including information technology, is critical. Parents of children with special health care needs hold strong opinions about their children's health care, including health information systems. Parents need to be central to discussions about development of integrated child health information systems if we are to develop information systems that serve the needs of children with special health care needs and their families.