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PubMed2005

Keynote address: The challenge of thalassemia for the developing countries.

The thalassemias occur at some of their highest frequencies in the developing countries, particularly those of Asia. In many countries, facilities for the control of these conditions are extremely limited. Although a great deal can be done to help the situation by developing further North-South and South-South partnerships for disseminating better practice, the major problem for the future lies in the unwillingness of governments and international health agencies to accept that the thalassemias present a health burden comparable to that of other major diseases in the developing countries. However, preliminary analyses suggest that, at least in the case of Asia, this is not true. Further work of this nature, together with more detailed frequency and economic data, are required to provide solid evidence for the health burden posed by thalassemia in the developing world. Unless this is done, the large populations of patients with thalassemia in these countries will continue to be neglected.

Adolescent↗
PubMed2004

Keynote address: medical informatics and emergency medicine.

A personal look at some of the developments in practical clinical informatics over the past two decades, with discussion of several successful projects, including the National Center for Emergency Medicine Informatics, the Azyxxi system, Federal Project ER One, the Institutes for Innovation in Medicine, the Medical MediaLab, Project Sentinel, and others. Lessons learned, and hints and suggestions for future developers and informaticists.

Emergency Medicine↗
PubMed2005

Keynote address: Toward a pragmatic model for community consultation in emergency research.

Under the Final Rule enacted in 1996 by the United States Food and Drug Administration and Office of Health and Human Services, community consultation and public notification are required when emergency research is to be conducted in the absence of prior informed consent by subjects. There is a dearth of published recommendations concerning the degree to which communities must be aware of the existence and parameters of a study for which informed consent might not be obtained prior to enrollment. It is argued that effective community consultation requires empirical measurement of the dynamics of community, and that ordinary notions of community may not capture the populations at greatest risk or those who might for other reasons figure most prominently in community consultation. A pragmatic approach to community consultation would establish benchmarks for such measures, and it is argued that such an approach is possible given the correct empirical measures.

Community-Institutional Relations↗