The aim of this study was to understand home healthcare nurses' current experiences in obtaining outside clinical information at the point of care and the type of clinical information they most desire in their patients' health information exchange profile. A Web-based survey was deployed to home health workers in New York to learn about their experiences retrieving outside clinical data prior to having access to health information exchange, preferred data elements and sources in their patients' health information exchange profiles, and how availability of outside clinical data may affect emergency department referrals. Of the 2383 participants, 566 responded for a 23.8% overall response rate, and 469 of these respondents were RNs. Most RNs, 96.7%, agreed that easier and quicker access to outside information would benefit delivery of care, and 72.6% said the number of emergency department referrals would decrease. When asked about pre-health information exchange access to patient data, 96.3% said it was problematic. Inpatient discharge summaries were chosen most often by the RNs as a top five desired data element 81.5% of the time. Obtaining outside clinical information has been a challenge without health information exchange, but improved access to this information may lead to improved care. Further study is required to assess experiences with the use of health information exchange.

The Tetra®gap Survey, a multicentre epidemiological survey on the outcome of tetraplegic spinal cord injured (TSCI) people from their ®rst admission to a Rehabilitation Department or Centre is currently being undertaken in France.The general objective of this survey is to evaluate the situation of the TSCI people and their conditions of life in its medical, psychological and social aspects.This ®rst article is aimed at presenting the protocol and the methodology of this survey. In a second part, yet to be submitted for publication, the preliminary results will be presented. It was ®rst necessary to create a database of the population of TSCI people known to the centres and medical rehabilitation services, removing double entries.The criteria used for inclusion in the study were: a complete or incomplete traumatic cervical cord lesion, including post-surgical complications; age 16 or over at the time of the accident which must have occurred before December 31, 1992.The enquiry consisted of a self-administered questionnaire carried out with surviving tetraplegic people who had given their informed consent for their participation. The questionnaire consecutively covered the following topics: the situation at the time of the accident, the medical evolution between the accident and the end of stay in a rehabilitation unit, their evolution after discharge and the current situation (medical, social, professional and personal).During this ®rst phase, 6082 TSCI people were identi®ed by the collaborating centres. The 603 ®les of those who had died and 769 double entries were removed. Thus, 4710 questionnaires were sent out. The results of the participation show that 2251 people gave their consent and received questionnaires (340 additional deaths were acknowledged at this step), 163 refused, 869 were lost for follow-up, and 67 were excluded. There was no reply from 1020 people. We received 1830 questionnaires of which 1669 ful®lled all the necessary criteria for data exploitation. Home interviews with people who gave their consent will be carried out in a second phase as well as a study of deaths. A 5-year longitudinal follow-up is scheduled.