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Profile of the Consensus Development Program in Denmark: The Danish Medical Research Council and The Danish Hospital Institute Torben Jorgensen NATIONAL CONTEXT The Danish consensus development program began in 1983 with the first conference on early detection of breast cancer. The idea of developing consensus by way of a public conference originates from the National Institutes of Health in the United States. A subcommit- tee under the Danish Medical Research Council (DMRC) initiated the conference program in Denmark. The subcommittee of the DMRC has cooperated with the Danish Hospital Institute to plan and imple- ment six consensus conferences to date. The Danish Hospital Insti- tute is a nonprofit institution, supported in part by the government and the county councils. The Medical Research Council and the Danish Hospital Institute have been the main sponsors of the pro- gram, although additional public and private funds have also sup- ported the program. At present there are two consensus develop- ment conferences per year. The main goals of the consensus development program are to inform the public about the state of the art of important health prob- lems and alternative treatments for these problems, and to provide an information base for health professionals, administrators, and politicians involved in decision making for health care planning and in the formulation of research agendas. The first two conferences had the supplemental goal of investigating whether this imported 96

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DANISH M=IC~ RICH COUNCIL ED DANISH HOSE KNEE 97 consensus methodology for technology assessment was appropriate for Danish society in the absence of a long-standing tradition of public hearings such as those seen in the United States. The costs for one consensus development conference, including conference planning and staffing, the printing and dissemination of the report, and overhead costs, amount to 1989 DK 300,000-350,000 (approximately U.S. $50,0001. This does not include fees for the planning group, questioning panel, or expert group, as their respec- tive contributions are provided free of charge. SCOPE OF THE PROGRAM In Denmark, six consensus development conferences have occurred on medical topics. The next conference, Reduction of Cancer Mor- tality by 15 Percent before the Year 2000, is currently being planned. The previous conferences were as follows: November 1983 December 1985 September 1986 April 1987 October 1988 January 1989 Early Detection of Breast Cancer Prevention and Treatment of Dental Caries Cholesterol and Ischemic Heart Disease Secretory Otitis Media (Glue Ear) Physical Training and Health Senile Dementia. A wide variety of technologies and health problems have been chosen as topics for consensus development conferences in the rela- tively short period of the program's existence. Three of the confer- ences addressed specific technologies, although alternative technolo- gies were considered for comparison. For example, in the case of Early Detection of Breast Cancer, x-ray mammography was com- pared with palpation and self-examination. Preventive technologies were assessed in four of the six previous conferences. Preventive technologies win also be considered in the upcoming conference on reduction of cancer mortality. Prevention has not explicitly been cited as a principal goal of the Danish con- sensus conference program, although the conferences are intended to inform the public of important issues in health. The technologies assessed are established, for the most part, but in some cases, new technologies have been assessed. The requests for topics to be assessed have come from the academic community of DMRC. The potential methods used to involve health planners in

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98 COI~S~NSUS DEVEL1)PMENT the topic selection process are currently under consideration for fu- ture conferences. Topic priorities are set by the subcommittee under DMRC, which includes the director of the Danish Hospital Institute. The subcom- mittee appoints the planning committee, which consists of the chair of the expert group and of the conference questioning panel, one or two members of the DMRC subcommittee, the head of the secretar- iat, and one or two specialists in the topic to be assessed. FORMAT AND CONDUCT OF THE PROCESS The consensus development process consists of three phases: (~) the planning phase (six to ten months), (2) the conference itself (three days), and (3) the publishing phase (one to two months). The last phase is addressed in the section on the dissemination and im- pact of the consensus statement. The Planning Phase Dunng the first phase, the planning committee formulates the main questions of the conference and selects the expert group and the questioning panel. The expert group consists of 12-~-6 professionals, mainly medical doctors, but also includes nurses, sociologists, psy- chologists, and economists who are working with the technology or the health problem to be assessed. The questioning pane} consists of doctors, academics, journalists, politicians, and patient representa- tives. Practical conference logistics are handled during this phase. Two weeks before the conference, the questioning pane! receives abstracts of the papers to be presented. The Conference 1 The evening before the first day of the conference, the question- ing pane} and the expert group meet for the first time and attend an oral presentation on the conference process. The two groups then meet separately to discuss strategies for the conference. The chair of the questioning panel conducts the conference. The first day of the conference is devoted to the presentation of approxi- mately 15 expert papers. Only brief questions for clarification are aBowed after the presentation of each paper. The conference is

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DANISH M=IC~ ARCH COACH AD D0ISHHOSP~IN=~=E 99 open to the public; about 150 individuals usually attend. Most of the attendees are medical professionals, although journalists from news- papers and sometimes the television networks may attend the con- ference. In the evening, the questioning panel meets in closed session to prepare the questions for experts on the second day of the confer- ence. During the three- to four-hour morning session, the panel asks questions of the expert group. Other participants are given a shorter amount of time to raise questions and to provide comments. In the afternoon, evening, and night of the second day, the question- ing panel meets in a closed session to discuss the issues at hand and to formulate the consensus statement. There is usually full consen- sus among the members of the questioning panel. The consensus statement is presented to the expert group and to the audience on the morning of the third day. The expert group may not be in complete agreement win the questioning panel. The only alterations made at this point are corrections to factual faults in the statement, if there are any. The consensus statement is the responsi- bility~of the questioning panel. The conference concludes with the release of the statement to the press. DOCUMENTATION AND USE OF EVIDENCE IN CONSENSUS DEVELOPMENT The chair of the expert group is responsible for the selection of other expert presenters and for the agenda of the first day of the conference. The composition of the expert group and the program for the first day are discussed by the planning group during the preparation for the conference. The chair of the expert group is urged to come forward with experts with different opinions. If the expert group does not include individuals with a variety of opinions, experts in the audience may voice the selectively omitted opinions. The preferred situation is to include all points of view in the formal presentations made by the group of experts. Each expert in the group is responsible for documentation of his or her presentation; He evi- dence may include reports of clinical trials, epidemiologic studies, literature reviews, etc. Often, references are made to international experiences, but apart from a few Swedish and Norwegian experts, the experts are all Danish.

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loo DISSEMINATION AND IMPACT CONSENSUS DEVELOPMENT In the time immediately following the conference, there is usually public debate on the topic in the newspapers, followed by debate in Danish professional journals. The statement is printed and widely distributed free of charge to the appropriate clinical, administrative, and political decision makers, as well as to libraries and research institutions. The statement is translated into English for publication of a small number of copies. There is no scientific evidence for the impact of the consensus processes, and the program has not been formally evaluated. There are two main project goals; the first is to inform the public. Each conference has been well covered by the press, and there has been public debate following the conference, but we do not know whether this has changed the behavior of citizens. The conference on Physical Training and Health, which was held in October 1988, probably had a greater impact than those of previous conferences. The Heart Association aided in the dissemination of an increased number of consensus statements for public education and in the pro- duction of an educational video based on the conference. The second goal is to establish an information base for making decisions in health planning. Here again it is difficult to state the impact of the consensus development conference. Many other fac- tors influence decision making and the dissemination of information to health planners, although we do believe that the consensus con- ferences have had some impact. For example, the statement from the conference on Early Detection of Breast Cancer, which was held in November 1983, could not recommend general mammography screening, as the pane} did not find evidence of clinical efficacy. The experts present at this conference held the opposite opinion. Denmark has not introduced general mammography screening, even though Sweden and other countries often examined for comparisons have introduced such protocols. The experts at the conference were dissatisfied with the statement; this is often the case for conferences where the pane} does not recommend the widespread diffusion of the medical technology in question. Apparently, the use of consensus development conferences for the assessment of medical technologies has encouraged development of a number of similar conferences in Denmark for the evaluation of technologies in other fields. The Prime Minister asked for a consen-

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DANISH MEDICO INCH COUNCIL AND D0ISHHOSP~ INSTATE 101 sus conference on water pollution, the results of which had an im- mediate impact on the Parliamentts decision. The questioning panel has consisted of citizens (which were selected to represent the popu- lation) for some of these conferences. Prior to the consensus confer- ence these individuals attend two weekend seminars to learn about the topic under consideration. The next consensus conference in this series will address mapping of the human genome.