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Cancer Risk Communication—What We Need to Learn

Cancer Risk Communication—What We Need to Learn Participants were charged with “identifying the most pressing and important basic and applied research questions in cancer risk communication.” Specifically, participants were asked to address two questions: 1) Which underlying processes in cancer risk communication need to be better understood to advance the field? and 2) How can we advance our ability to conduct theory-based risk communication research in the real-world context of cancer information? A third question was advanced in the course of the discussion: What research is needed to help accelerate the adoption of “best practices” in primary care and other settings in which cancer risk information is routinely communicated? Underlying Processes The Roles of Cognition Although there is a considerable amount of literature on cognitive aspects of risk perception and communication, we a need to enhance our understanding of and ability to operationalize these cognitive functions and to better represent their multidimensional nature. 1) How do perceptions of risk vary among individuals at the same, and at different, levels of actual risk? 2) Which dimensions of risk most influence cognitive, affective, and behavioral responses to risk information, and how should they be measured? 3) How do semantic labels affect perceptions of risk and subsequent behavior (e.g., mammograms can be labeled as a way to detect breast cancer early or as a way to routinely affirm healthy breasts)? 4) How do cognitive constructs, such as mortality salience, illness representations, and perceived illness time frames, influence perceptions of, and responses to, cancer risk? The Roles of Affect Current theories of risk perception and communication tend to be highly cognitive, yet affective states moderate how risk messages are processed, are a consequence of risk information processing, and mediate subsequent cognitive and behavioral responses to risk information. A better understanding of the affective components of risk perception, risk response, and risk communication, and their relationship to cognitive components, are needed. 1) How can theories of risk perception and communication be modified to better account for the roles of affect? 2) What are the cognitive and emotional consequences to an individual faced with a risk for which there is no known intervention (e.g., a genetic risk)? 3) How can defensive or avoidance reactions be minimized? The Roles of Values Values play an important but poorly understood role in many risk communication situations. If one potential objective of a risk communication program is to help people make good informed decisions on the basis of their values, the question arises: How do we help people identify those values? Moreover, people's health “values” (i.e., the relative priority assigned to preservation of health versus other possible priorities) have been known to change in response to serious health threats. A better understanding of the mechanisms of this change may be important to better understanding the structure of effective cancer risk communication. 1) How can individual decision makers be aided in assessing and employing their own values to make the best possible decision for their current situation? 2) What are the experiences that precipitate a change in health values? Information Searching A better understanding of individuals' information search processes is critical to an enhanced understanding of the attributes of information that are perceived to be relevant. An enhanced understanding of this domain is likely to have implications both for theories of risk perception and response, as well as for designing more effective risk communications. 1) What are the processes underlying how people search for risk information? How do their biases influence the process and outcome? What types of information do they seek (e.g., do they seek information that confirms previously held notions or information that may lead them in new directions)? 2) How does information gathered during the search affect subsequent experiences related to quality of life (e.g., information about the implications of a positive genetic test)? Developmental Differences Much, if not most, of what we know about risk perception and the relationship between risk perceptions and subsequent actions comes from the study of adults. Developmental differences undoubtedly influence the way in which children and adolescents process and act on risk information. Systematic examination of these differences is required to better understand the unique challenges of more effectively communicating with young audiences. 1) How do developmental differences influence cognitive and affective processing of health risk information? 2) What are the appropriate outcomes of risk communication for youth audiences? Building Risk Communication Research Capacity Infrastructure A number of strategies were identified to enhance the research infrastructure and thereby accelerate the pace and quality of cancer risk communication research. Successful examples of each of these opportunities are seen in other fields of research. Development of a population-based information delivery “test bed” that would be available to different research teams would encourage and facilitate theoretical and applied health risk communication research. An interactive kiosk system developed by Strecher and colleagues (1), installed in 100 public spaces in Michigan, was used as an example of an information delivery system that could be used as a shared resource among many investigators. Development of a nationally representative survey, conducted on a recurring basis with input from investigators in the field and with data that would be publicly available, would provide a natural vehicle through which to assess the relationship among risk perceptions, antecedents, and consequences over time. The survey, similar to the General Social Survey or the National Health Interview Survey, would provide a tremendous resource for the development and testing of risk communication theory. New communication technologies are providing dramatically expanded opportunities for conducting risk communication research, yet most professionals with an interest in health risk communication have limited access to training that will allow them to take advantage of these developments. Funding existing laboratories for health communication research to conduct short-format or longer-format training programs for research professionals would increase the number of research teams capable of taking advantage of these research opportunities. Cancer risk communication research is inherently an interdisciplinary activity, yet few extant research teams are ideally staffed across the various relevant disciplines. Research funding mechanisms should be used to encourage innovative interdisciplinary staffing, wherever possible. Mechanisms for tracking developments in the many academic disciplines from which cancer risk communication draws are seriously underdeveloped. A great need exists to use electronic publishing to broadly disseminate abstracts and other relevant information among research professionals working on health risk communication issues. Outcome Evaluation With the broad, multifaceted nature of risk communication, more consideration must be given to the potential objectives of risk communication and how accomplishment of those objectives can best be assessed in response to a risk communication program. 1) What is the desired outcome of risk communication and what criteria are we going to use to demonstrate that a risk communication is effective? What is the appropriate role for impact on sense of well-being and quality of life? 2) How do the objectives of the risk communication effort influence the evaluation design? There is a need to move beyond using specific behavioral outcomes as the evaluation end point, especially in situations in which the communication objective is to enable informed decision making by encouraging individuals to consider potential risks and benefits in the context of their own values. Research to Accelerate Identification and Adoption of Best Practices Primary Care Setting For a variety of reasons, many people report that a health care provider, often a primary care provider, is their preferred source of important health information, yet the literature also indicates that health care providers, and the primary care setting, often fail to deliver effective health risk information. A better understanding of these barriers and the means for overcoming them are required to make better use of one of the preferred channels of health risk information by consumers. 1) How are primary care providers currently providing cancer risk information? 2) What constitutes successful cancer risk communication in a primary care environment? What does the process look like, and what are the desired outcomes? 3) What are the barriers in primary care to successful provision of cancer risk information? Which of those barriers can be modified and how? 4) Realistically, how can the training of primary care providers be modified to better enable them to addresses their patient's individual information and psychosocial needs? Facilitating Decision Making Fischhoff (2) made the case, and participants largely concurred, that in risk communication less is more. An act of risk communication is more likely to be effective to the extent that it presents a parsimonious amount of information—new or otherwise—that best allows members of the audience to understand the risk as an expert would. This perspective poses a number of important research questions. 1) What are efficient and effective means for identifying the most relevant information to present? 2) What kinds of decision-supporting interventions (e.g., decision trees or aids) are most effective with which types of decisions and individuals? 3) What mechanisms are most effective in clarifying an individual's information needs in advance of partaking in the information search process (e.g., to prepare for a discussion with a physician)? 4) What does the public see as the most important health decisions with which they are faced? What do they see as the barriers and facilitators they face in making what they consider to be a good decision? What type of support do they need to improve their decision making and to believe that they made a good decision? Effective Channels The range of channels that can be used to communicate risk information is large and growing. As the options expand, it becomes increasingly important to understand the strengths and limitations of each of these channels. 1) What is the most effective means for presenting risk information in each of the various channels currently available? 2) Which channels are particularly well suited for which types of risk communication? 3) Given that motivated members of the lay public often seek out publications intended for health professionals, will specifically crafted lay summaries of the information enhance outcomes at the individual and the population level? 4) How do we harness social diffusion of important risk information? 5) What are the most effective means for enhancing exposure among affected audiences to important health risk information? Message Content Ultimately, risk communicators must make difficult decisions about what information is most important to present. New information technologies are providing dramatically enhanced options to present different information to different types of people. Even the new technologies have limits, however, and a better understanding of the most relevant message-tailoring variables is important to advance the field. Moreover, risk information is inherently uncertain. Determining how best to communicate this uncertainty without undermining the effectiveness of the message is an important outstanding question. 1) Which individual differences are most critical to consider in creating tailored risk communication messages (e.g., level of risk exposure)? 2) What are the most appropriate ways to communicate risk uncertainty to the public? Conclusion The extant risk communication literature has clear relevance and value for better understanding the challenges of cancer risk communication. The nature and scope of the research questions identified, however, demonstrate that there is a pressing need for additional research so that the benefits of the expanding knowledge base on cancer risk can be more broadly and more effectively employed by members of the population to make personally relevant health decisions. Understanding the scope of these research questions will help investigators and funding agencies understand where the legitimate future research opportunities lie. References (1) Strecher VJ, Greenwood T, Wang C, Dumont D. Interactive media and risk communication. Monogr Natl Cancer Inst  1999; 25: 134-9. Google Scholar (2) Fischhoff B. Why risk communication can be so difficult. Monogr Natl Cancer Inst  1999; 25: 7-13. Google Scholar Oxford University Press http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

Cancer Risk Communication—What We Need to Learn

JNCI Monographs , Volume 1999 (25) – Jan 1, 1999

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Oxford University Press
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Oxford University Press
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1052-6773
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1745-6614
DOI
10.1093/oxfordjournals.jncimonographs.a024199
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Abstract

Participants were charged with “identifying the most pressing and important basic and applied research questions in cancer risk communication.” Specifically, participants were asked to address two questions: 1) Which underlying processes in cancer risk communication need to be better understood to advance the field? and 2) How can we advance our ability to conduct theory-based risk communication research in the real-world context of cancer information? A third question was advanced in the course of the discussion: What research is needed to help accelerate the adoption of “best practices” in primary care and other settings in which cancer risk information is routinely communicated? Underlying Processes The Roles of Cognition Although there is a considerable amount of literature on cognitive aspects of risk perception and communication, we a need to enhance our understanding of and ability to operationalize these cognitive functions and to better represent their multidimensional nature. 1) How do perceptions of risk vary among individuals at the same, and at different, levels of actual risk? 2) Which dimensions of risk most influence cognitive, affective, and behavioral responses to risk information, and how should they be measured? 3) How do semantic labels affect perceptions of risk and subsequent behavior (e.g., mammograms can be labeled as a way to detect breast cancer early or as a way to routinely affirm healthy breasts)? 4) How do cognitive constructs, such as mortality salience, illness representations, and perceived illness time frames, influence perceptions of, and responses to, cancer risk? The Roles of Affect Current theories of risk perception and communication tend to be highly cognitive, yet affective states moderate how risk messages are processed, are a consequence of risk information processing, and mediate subsequent cognitive and behavioral responses to risk information. A better understanding of the affective components of risk perception, risk response, and risk communication, and their relationship to cognitive components, are needed. 1) How can theories of risk perception and communication be modified to better account for the roles of affect? 2) What are the cognitive and emotional consequences to an individual faced with a risk for which there is no known intervention (e.g., a genetic risk)? 3) How can defensive or avoidance reactions be minimized? The Roles of Values Values play an important but poorly understood role in many risk communication situations. If one potential objective of a risk communication program is to help people make good informed decisions on the basis of their values, the question arises: How do we help people identify those values? Moreover, people's health “values” (i.e., the relative priority assigned to preservation of health versus other possible priorities) have been known to change in response to serious health threats. A better understanding of the mechanisms of this change may be important to better understanding the structure of effective cancer risk communication. 1) How can individual decision makers be aided in assessing and employing their own values to make the best possible decision for their current situation? 2) What are the experiences that precipitate a change in health values? Information Searching A better understanding of individuals' information search processes is critical to an enhanced understanding of the attributes of information that are perceived to be relevant. An enhanced understanding of this domain is likely to have implications both for theories of risk perception and response, as well as for designing more effective risk communications. 1) What are the processes underlying how people search for risk information? How do their biases influence the process and outcome? What types of information do they seek (e.g., do they seek information that confirms previously held notions or information that may lead them in new directions)? 2) How does information gathered during the search affect subsequent experiences related to quality of life (e.g., information about the implications of a positive genetic test)? Developmental Differences Much, if not most, of what we know about risk perception and the relationship between risk perceptions and subsequent actions comes from the study of adults. Developmental differences undoubtedly influence the way in which children and adolescents process and act on risk information. Systematic examination of these differences is required to better understand the unique challenges of more effectively communicating with young audiences. 1) How do developmental differences influence cognitive and affective processing of health risk information? 2) What are the appropriate outcomes of risk communication for youth audiences? Building Risk Communication Research Capacity Infrastructure A number of strategies were identified to enhance the research infrastructure and thereby accelerate the pace and quality of cancer risk communication research. Successful examples of each of these opportunities are seen in other fields of research. Development of a population-based information delivery “test bed” that would be available to different research teams would encourage and facilitate theoretical and applied health risk communication research. An interactive kiosk system developed by Strecher and colleagues (1), installed in 100 public spaces in Michigan, was used as an example of an information delivery system that could be used as a shared resource among many investigators. Development of a nationally representative survey, conducted on a recurring basis with input from investigators in the field and with data that would be publicly available, would provide a natural vehicle through which to assess the relationship among risk perceptions, antecedents, and consequences over time. The survey, similar to the General Social Survey or the National Health Interview Survey, would provide a tremendous resource for the development and testing of risk communication theory. New communication technologies are providing dramatically expanded opportunities for conducting risk communication research, yet most professionals with an interest in health risk communication have limited access to training that will allow them to take advantage of these developments. Funding existing laboratories for health communication research to conduct short-format or longer-format training programs for research professionals would increase the number of research teams capable of taking advantage of these research opportunities. Cancer risk communication research is inherently an interdisciplinary activity, yet few extant research teams are ideally staffed across the various relevant disciplines. Research funding mechanisms should be used to encourage innovative interdisciplinary staffing, wherever possible. Mechanisms for tracking developments in the many academic disciplines from which cancer risk communication draws are seriously underdeveloped. A great need exists to use electronic publishing to broadly disseminate abstracts and other relevant information among research professionals working on health risk communication issues. Outcome Evaluation With the broad, multifaceted nature of risk communication, more consideration must be given to the potential objectives of risk communication and how accomplishment of those objectives can best be assessed in response to a risk communication program. 1) What is the desired outcome of risk communication and what criteria are we going to use to demonstrate that a risk communication is effective? What is the appropriate role for impact on sense of well-being and quality of life? 2) How do the objectives of the risk communication effort influence the evaluation design? There is a need to move beyond using specific behavioral outcomes as the evaluation end point, especially in situations in which the communication objective is to enable informed decision making by encouraging individuals to consider potential risks and benefits in the context of their own values. Research to Accelerate Identification and Adoption of Best Practices Primary Care Setting For a variety of reasons, many people report that a health care provider, often a primary care provider, is their preferred source of important health information, yet the literature also indicates that health care providers, and the primary care setting, often fail to deliver effective health risk information. A better understanding of these barriers and the means for overcoming them are required to make better use of one of the preferred channels of health risk information by consumers. 1) How are primary care providers currently providing cancer risk information? 2) What constitutes successful cancer risk communication in a primary care environment? What does the process look like, and what are the desired outcomes? 3) What are the barriers in primary care to successful provision of cancer risk information? Which of those barriers can be modified and how? 4) Realistically, how can the training of primary care providers be modified to better enable them to addresses their patient's individual information and psychosocial needs? Facilitating Decision Making Fischhoff (2) made the case, and participants largely concurred, that in risk communication less is more. An act of risk communication is more likely to be effective to the extent that it presents a parsimonious amount of information—new or otherwise—that best allows members of the audience to understand the risk as an expert would. This perspective poses a number of important research questions. 1) What are efficient and effective means for identifying the most relevant information to present? 2) What kinds of decision-supporting interventions (e.g., decision trees or aids) are most effective with which types of decisions and individuals? 3) What mechanisms are most effective in clarifying an individual's information needs in advance of partaking in the information search process (e.g., to prepare for a discussion with a physician)? 4) What does the public see as the most important health decisions with which they are faced? What do they see as the barriers and facilitators they face in making what they consider to be a good decision? What type of support do they need to improve their decision making and to believe that they made a good decision? Effective Channels The range of channels that can be used to communicate risk information is large and growing. As the options expand, it becomes increasingly important to understand the strengths and limitations of each of these channels. 1) What is the most effective means for presenting risk information in each of the various channels currently available? 2) Which channels are particularly well suited for which types of risk communication? 3) Given that motivated members of the lay public often seek out publications intended for health professionals, will specifically crafted lay summaries of the information enhance outcomes at the individual and the population level? 4) How do we harness social diffusion of important risk information? 5) What are the most effective means for enhancing exposure among affected audiences to important health risk information? Message Content Ultimately, risk communicators must make difficult decisions about what information is most important to present. New information technologies are providing dramatically enhanced options to present different information to different types of people. Even the new technologies have limits, however, and a better understanding of the most relevant message-tailoring variables is important to advance the field. Moreover, risk information is inherently uncertain. Determining how best to communicate this uncertainty without undermining the effectiveness of the message is an important outstanding question. 1) Which individual differences are most critical to consider in creating tailored risk communication messages (e.g., level of risk exposure)? 2) What are the most appropriate ways to communicate risk uncertainty to the public? Conclusion The extant risk communication literature has clear relevance and value for better understanding the challenges of cancer risk communication. The nature and scope of the research questions identified, however, demonstrate that there is a pressing need for additional research so that the benefits of the expanding knowledge base on cancer risk can be more broadly and more effectively employed by members of the population to make personally relevant health decisions. Understanding the scope of these research questions will help investigators and funding agencies understand where the legitimate future research opportunities lie. References (1) Strecher VJ, Greenwood T, Wang C, Dumont D. Interactive media and risk communication. Monogr Natl Cancer Inst  1999; 25: 134-9. Google Scholar (2) Fischhoff B. Why risk communication can be so difficult. Monogr Natl Cancer Inst  1999; 25: 7-13. Google Scholar Oxford University Press

Journal

JNCI MonographsOxford University Press

Published: Jan 1, 1999

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