Risk communication and public participation during the investigation of cancer clusters

在美国，平均每天有三个社区达到足够的关注状态，联系他们的州卫生部门进行可疑癌症集群的调查，在空间和时间上出现了不寻常的和无法解释的癌症发生的增加。州卫生部门以这样或那样的方式调查了大约三分之一的这些病例，但发现很少（约1%）存在可疑的癌症发病率。然而，这些社区关注和卫生部门反应的案例为调查风险认知、风险沟通和公众参与风险分析提供了一个有效的环境。该项目是一项既定研究工作的延续和扩展，其目的是检查围绕公民发起的癌症群集调查的社会和心理环境，重点放在两个方面：国家卫生部门的沟通影响，以及在这些病例期间举行的公众会议上公民和官员的经验。为了实现第一个目标，该项目将整合和发展两个主要的理论模型，一个是风险感知的核心（心理测量模型），另一个是信息处理和决策的核心（启发式系统模型）。在此之前的工作已经研究了五个这样的案例。这一扩展将使用邮件和电话调查方法来研究更大、更多样化的群集调查（约50个），从而实现跨案例的比较。分析将继续完善一个模型，该模型描述了在这些病例中向社区提供的信息的影响，并且还将评估这些病例特有的特定情况（例如，癌症类型，可疑原因）的影响。分析还将侧重于各州卫生部门用于传达其流行病学调查结果的不同通信技术。为了实现第二个目标，将对五个案例进行更深入的研究，重点放在公共会议上，这几乎总是这些社区经验的重要特征。这项工作将进一步利用邮件和电话调查方法，还将利用广泛的访谈和焦点小组。总的来说，该项目预计将提供详细的检查，以了解在这些情况下信息是如何传达的，以及公民如何利用信息来达到或改变他们对癌症发病率的关注。相对于对风险感知的科学兴趣，本调查最有趣的方面之一在于，群集病例几乎总是呈现出一种情况，在这种情况下，科学证据表明很少或没有风险，但这种评估是用癌症流行病学的概率语言表达的。这项调查将促进对个人如何对这种形式的信息作出反应的科学理解，这是心理学、社会心理学和风险沟通领域长期关注的问题。从更实际的角度来看，该项目还旨在评估向社区提供这种形式的信息的方法。该分析将阐明传播流行病学研究结果的更有效手段，因此将为负责这项工作的人提供重要和有用的反馈。该项目的最终目标是更有效地传达这类信息，并更好地为涉及此类案件的社区提供服务。

Every day in the United States, on average, three communities reach asufficient state of concern to contact their state health department for theinvestigation of a suspected cancer cluste, ran unusual and unexplainedincrease in the occurrence of cancer in space and time. State healthdepartments investigate about a third of these cases in one way or another,but find that very few (about 1%) present suspect cancer rates. However,these cases of community concern and health department response present aneffective circumstance in which to investigate risk perception, riskcommunication, and public participation in risk analysis. This project isthe continuation and expansion of an established research effort designed toexamine the social and psychological circumstances surroundingcitizen-initiated cancer cluster investigations, with an emphasis on twoaspects: the effects of state health department communications, and theexperiences of citizens and officials in public meetings held during thesecases. To meet the first goal, the project will integrate, and develop, twoprimary theoretical models, one central to risk perception (the Psychometricmodel) and one central to information processing and decision making (theHeuristic-Systematic model). Previous work in this effort has examined aseries of five such cases. This expansion will use mail and phone surveymethods to look at a larger and more diverse set of cluster investigations(about 50), enabling a comparison across cases. The analysis will continuethe refinement of a model that describes the effects of information providedto communities in these cases, and will also evaluate the effects of thespecific circumstances unique to theses cases (e.g., types of cancer,suspected causes). The analysis will also focus on the differentcommunication techniques used by various state health departments to conveythe results of their epidemiological investigations. To meet the secondgoal, a set of five cases will be more deeply studied with an emphasis onthe public meetings that are almost always an important feature of thesecommunity experiences. That effort will make further use of mail and phonesurvey methods, and will also make use of extensive interviews and focusgroups. Overall, the project is expected to provide a detailed examinationof how information is conveyed in these cases, and how citizens make use ofinformation to reach, or modify, their orientation toward concerns aboutcancer rates.Relative to scientific interests in risk perception, one of the mostinteresting aspects of this investigation resides in the fact that clustercases almost always present a circumstance in which the scientific evidenceindicates little or no risk, yet that evaluation is couched in theprobabilistic language of cancer epidemiology. This investigation willadvance scientific understanding of how individuals react to this form ofinformation, a problem that has been a long-standing concern in the fieldsof psychology, social-psychology, and risk communication. In more practicalterms, this project is also designed to evaluate the methods by which thisform of information is provided to communities. The analysis will illuminatethe more effective means of communicating the results of epidemiologicalstudies and as such will provide important and useful feed-back for thosewho are charged with that work. The project's ultimate goal is that thiskind of information will be communicated more effectively and thecommunities involved in such cases will be better served.