Workshop III – Recommendations

R.E.George, Canadian Haemophilia Register, University of Guelph, Guelph, Ont. (Canada) Recommendation 1 Workshop III participants agreed that one underlying theme predominated all the Workshop III presentations. That was the need for information at all levels of the Haemophilia Health Care System. Examples included the haemophiliacs ‘need for information on current research results and treatment methods, the health care teams’ need to know about concentrate usage, and the Haemophilia Societies’ need to know about organization and legislation used by other countries. It is therefore recommended that the World Federation of Hemophilia (WFH) actively encourage, organize, support and control those mechanisms which provide for the collection, provision and implementation of information systems. As a part of this recommendation, the workshop recognizes that it will be necessary to reflect the implementation throughout all levels of Haemophilia Societies and health care teams, and take into account the resources of the respective Haemophilia Societies. However, all areas of the world can contribute to, and benefit from, information systems. More specifically, the recommendation should be considered to be a multi-part problem that looks at each step in the process including the collection, the provision, and the implementation. The only principle to be adhered to will be the WFH statement on information, ‘all data be made freely available to all parties within the bounds of patient confidentially’. Recommendation 2 There are individual, regional and national differences which must be taken into account when any project of the Haemophilia Societies is attempted. It is therefore recommended that any project implemented needs to take into account the expectations of the person with haemophilia, and the differences between regions of the world. Recommendation 3 There should be a strong role of self-care and mutual aid between persons with haemophilia, and between groups of Workshop III – Recommendations 117