Madam, - Muiris Houston's column of August 11th focuses on the involvement of advocacy and other groups in medical conferences. As he says, patient participation is common in the United States. However the situation is changing in Europe.
For example, the European Breast Cancer Conferences jointly hosted by Europa Donna, The European Breast Cancer Coalition, EORTC (European Organisation for Research and Treatment of Cancer) Breast Cancer Group, and EUSOMA (European Society of Mastology) could be seen as a model of collaboration.
The programme for the fourth European Breast Cancer Conference, to be held in Hamburg in March 2004, describes the conference scope as follows: "The European Breast Cancer Conference (EBCC) is targeted at European and international researchers, medical and lay contributors, all devoted to multidisciplinary breast cancer research, prevention, treatment and care or advocacy.
"It brings together doctors, scientists, and patient advocates to talk not just about the latest scientific advances, but also the ethical, moral, social and practical issues concerned with caring for patients with breast cancer. EBCC has become a unique conference, where the views of all the major players are expressed and discussed." Over 4,000 participants attended EBCC-3 in Barcelona in March 2002, making these conferences Europe's largest forum on breast cancer.
Appropriately, the theme for EBCC-4 is partnership - partnership between scientist and clinician, between doctor and patient, and the partnership of science and advocacy. Each conference has ended with the formulation of a statement, voted on by the conference delegates, setting out goals for each organisation to work towards and to advocate. One result has been collaborative lobbying by the three groups at the European Parliament and European Commission. Another has been an ever increasing number of requests for speakers to represent the patient-advocate perspective at professional meetings.
Europa Donna Ireland, The Irish Breast Cancer Campaign, strongly encourages organisers of medical conferences in Ireland to include patient advocates and other groups in their programmes. It is in all our interests to advance understanding, enhance communication, progress research, and work towards ensuring that the best possible research, diagnostic and treatment environment is available to Irish patients. - Yours, etc.
DEIRDRE O'CONNELL, Chairperson, Europa Donna Ireland, Dublin 8.