www.palliativecareglasgow.info: Developing Online Palliative Care Information

摘要

The Glasgow Palliative Care Information Network provides an online source of information about palliative care and palliative care services to patients, their families and professionals, particularly generalists.The information for patients and carers aims to clarify what palliative care is and how such services are accessed. The section for professionals includes guidelines, protocols, links and resources which can be used to support their practice in both hospital and community settings.It is also planned to place public access terminals in relevant locations across the city to encourage access to the information available online and by so doing to improve awareness of palliative care and how it is delivered. In addition the network will offer internet access to a group of patients and assess the effect of the web based information on anxiety levels when compared to more traditional media. Introduction The provision of appropriate information to patients and professionals receiving and delivering palliative care has been and remains an area of concern (Houts et al, 1991) particularly as the importance of information in this area is increasingly well recognised (Addington-Hall and McCarthy, 1995), with many patients and their carers placing much importance upon this being given in a pro-active manner. For patients and their families information is considered to be very important (Lecouturier et al, 1999) and may be a means of combating the uncertainty generated by their prognosis. For those who deliver palliative care – many of whom work at the generalist level (SPPC, 1998) e.g. hospital and Primary Care Team staff – they often require information of a specialist nature at irregular intervals. The wide range of clinical situations they encounter may create problems with transferring the expertise gained in one situation to another.It is also possible that the proliferation of specialist nurses in recent years has led to both professionals and patients becoming confused by the number and roles of the staff they encounter.Internet technologies improve upon traditional methods of providing information (Sheppard and Charnock, 2002) by organising material in such a way that different users will find a personal path through the material that reflects their problems and their feelings about those problems. It also goes some way to meeting the wish for information to be available where and when people want it. The net allows for quicker, and easier updating of information and of indicating responsiveness to users who may wish material added, moved or changed. Earlier concerns about quality of information on the internet have proved largely unfounded (Ferguson, 2002, Eysenbach and Kohler, 2002, Pandolfini and Bonati, 2002) and cancer strategies have expressed the view that information giving is of great importance (Eaton, 2002).Palliative care prides itself upon openness and honesty in communication and the principles behind the development of the internet share that concern about access to information and the free sharing of knowledge. It is no surprise then to find that there are already many Palliative Care sites available on the net (Sweeney, 2002) and the development described here reflects an acceptance of the importance of the medium. Background The New Opportunities Fund has funded the development of the Glasgow Palliative Care Information Network for 3 years until March 2005. Essentially it will be an online approach to meeting the information needs of both public and professionals and an opportunity to examine the impact on patients and service providers of this method of information provision. A team of two staff with backgrounds in palliative care, IT and public information provision were employed to develop and maintain the site for the duration of the project with a view to its survival in the longer term. It is also hoped that the increase in collaboration required by the formation of the West of Scotland Managed Clinic