Approximately 20 participants from a number of European countries will take part in a three day workshop in Bergen i April. The participants represent various communities affected by AIDS. They will discuss a variety of issues related to community participation in research.
There will be both open and closed sessions in this workshop. Those who are interested in the issues discussed at the workshop are invited to the open sessions, but space is limited. If you are interested in attending the open sessions, please contact us at the address given below. We will send a confirmation to the participants approximately 10 days before the meeting. Proceedings from the meeting will be available at the end of the year.
Background to the meeting
Internationally, especially in the US, there is considerable experience among community members in issues of trial design, and there has been real input concerning specific questions. There has been relatively little interest in issues of trial design in Europe, although a number of community networks in the area of treatment policies have been established, such as the European AIDS Treatment Group.
The basic idea of Community Advisory Boards (CAB) in the context of HIV/AIDS clinical trials is by now well established. Especially in the US, a number such advisory boards have been functioning for quite some time. Although there has been less experience in European countries, there have been a few CABs in these countries as well. However, there are still issues that need to be addressed. Some of these are:
1. How can one select members that are truly representative of the Community? This is a particularly important question in a European context, as clinical trials often involve a number of different countries. Who should the pharmaceutical industry or research institutions contact when whey wish to establish a community advisory board?
2. How can one educate the community representatives so that they will be able to represent effectively the interests of the community? How can one develop critical expertise of sufficiently high standard so that the community input will have a real impact? And how can one ensure that the CAB is independent of the pharmaceutical company?
3. How can one establish a network of interested people in Europe who are involved in issues of clinical trials? Is it possible to utilise existing networks (such as the European AIDS Treatment Group), or should these be supplemented by additional networks? How can one utilise existing well-functioning national expertise (such as NAM in the UK) in a European context?
General aims of the workshop
The aims of this workshop are to explore these questions, to exchange information between members of different CABs, and to establish general guidelines for CABs. We will also explore the possibility of establishing a network of people in Europe who can exchange information about how to provide effective input to policy issues of clinical trials and issues of controversy within actual clinical trials. This network will supplement existing networks involved in treatment policies in general.
Specific topics to be discussed during the meeting
1. What is community representation?
2. Informed consent issues
3. CAB as a policy body. Establishment of company CABs.
4. How should one go about establishing a clinical trial network?
5. What experience so far is available concerning existing CABs?
For more information about the workshop, please contact us. Write us for a free subscription to this newsletter:
Department of Philosophy
Att Reidar K. Lie
University of Bergen
Fax. +47 55 58 96 51
For more information, see also: