A Publication of the Subcommittee on Risk Communication and Education Public Health Service (PHS)
The Health Risk Communicator is published for health risk communication practitioners and researchers. The primary goals are to provide a forum for the exchange of news and ideas about contemporary health risk communication and education issues and to dispense practical information on emerging trends, issues, and needs related to health risk communication principles and practices. The newsletter has been approved by the Environmental Health Policy Committee for a 1 year trial. Our audience is Federal government health risk communicators. We hope the publication will also foster cooperative relationships among health risk communicators.
The Communicator welcomes your contributions and comments about current health risk communication programs, activities, and issues. Please send your news and information for publication to the managing editor, Tim Tinker, Dr.PH, Agency for Toxic Substances and Disease Registry, 1600 Clifton Rd., E33, Atlanta, GA 30333. Dr. Tinker's telephone number is 404/6396206, fax 404/6396208, and Internet address txt2@atsod3.em.cdc.gov.
Health risk communication is getting into the spotlight at the
National Institute for Occupational Safety and Health (NIOSH),
CDC. Although communicating information on health risks in the
workplace to employees and employers is one of NIOSH's mandates,
only recently has risk communication been incorporated into
research and practicebased programs. In the new Morgantown,
West Virginia, laboratory, a division will be dedicated
exclusively to occupational health communication.
Here are a few examples of risk communications at NIOSH:
Contact Linda M. Goldenhar, Ph.D. or Raymond Sinclair, MA, in Cincinnati at 513/ 8414493 to find out more about NIOSH's health risk communication activities.
Environmental Education in Healthy People 2000.
Healthy People 2000 outlines a national strategy for significantly improving the health of the American people in the decade preceding the year 2000. The National Institute of Environmental Health Sciences, NIH, and the National Center for Environmental Health, CDC, coordinate the 16 objectives related to environmental health. These agencies cochair the Environmental Health Working Group, set priorities, develop implementation plans, design strategies, and coordinate activities directed toward attaining the 16 objectives. Educating the public is a basic component of the strategies to achieve several objectives by the year 2000.
The public education strategies for achieving the environmental health objectives of Healthy People 2000 are:
For instance, strategies to reduce blood lead levels include educating physicians about childhood lead poisoning and how to prevent it. Such education efforts are particularly important in parts of the United States because some doctors do not know that lead poisoning is a problem for the populations they serve.
CDC has education programs about lead poisoning at the national, state, and local levels. On the national level, CDC is involved in coordinating the lead education programs of other Federal agencies, organizing national educational conferences, and assisting the National Lead Information Center. CDC also serves as a resource and consultant for national organizations and others involved in leadrelated education activities.
At the state and local level, CDC administers the Childhood Lead Poisoning Prevention Grants Program. This program currently funds programs at 37 state or local health departments to expand or develop their education and outreach efforts. CDC also assists health educators in those state and local programs by providing resources and serving as a clearinghouse and consultant on materials and education strategies. For more information, contact John Schelp of NIEHS at 919/5415723 or Mark McClanahan of CDC at 404/4887297.
A New Publication: Addressing Community Health Concerns at Hazardous Waste Sites: Survival Skills for Local Health Officials.
The National Association of County and City Health Officials (NACCHO) announced the release of a handbook that is a practical guide both to handling Superfund issues and to addressing community health concerns at hazardous waste sites. The handbook also includes techniques local health officials can use to build relationships and leadership in their community. Among other items, the book includes the following:
Funded by a cooperative agreement with the Agency for Toxic Substances and Disease Registry (ATSDR), the handbook is available through NACCHO. To order the handbook, or for more information about NACCHO, call Debbie Dorman at 202/7835550.
NACCHO is a nonprofit membership organization serving 3,000 local health departments nationwide. NACCHO provides education, information, research, and technical assistance to local health departments and facilitates partnerships to promote and strengthen public health among local, state, and Federal agencies.
CheckOurKidsforLead Program.
About 6 years ago, the work of the Environmental Protection Agency's (EPA) Office of Pollution Prevention and Toxics (OPPT) to protect children from lead poisoning increased dramatically, bringing involvement in several major government and private initiatives. A couple of years into the program, two OPPT branch chiefs asked, "What are we, as an organization of some 500 people, doing to ensure our employees' kids younger than 7 years old are tested for lead poisoning?" That thought inspired 25 volunteers to form a group called the OPPT CheckOurKidsforLead Workgroup. The volunteers solicited and obtained support and participation from other EPA groups including the unions, the Office of Human Resource Management, and the Safety, Health, and Environmental Management Division.
The Workgroup accomplished its primary goal of educating OPPT staff and encouraging screening of children for blood lead by developing an information packet that was distributed throughout OPPT. In May 1993, the Workgroup sponsored a seminar for EPA on lead poisoning with presentations by staff from the Public Health Service, Department of Housing and Urban Development, EPA, and the District of Columbia Lead Poisoning Prevention Program. The seminar was videotaped and copies are available. The Workgroup developed a baby greeting card with information on lead poisoning, which is given to every new OPPT parent.
Workgroup members held a seminar at the Howard University School of Nursing. Howard University worked with the Workgroup to incorporate aspects of lead poisoning issues into its curricula for the School of Nursing and the School of Communications.
The OPPT CheckOur-Kidsfor-Lead Program may be a useful model for other health risk education efforts because it effectively combined the spirit of volunteerism at EPA and in the community with the special technical talents of program scientists. Persons interested in learning more about the program can contact Cindy Stroup (202/2603889) or Joe Breen (202/2600686).
Partnerships for Communication Initiative.
Prominent among the goals of the National Institute of Environmental Health Sciences (NIEHS) is support of research aimed at achieving environmental justice for all populations. Tests to assess the health effects of environmental pollution are often performed and regulations based on such tests are often promulgated with little or no input from affected communities. In 1994, NIEHS launched the Partnerships for Communication Initiative to institute mechanisms to bridge this crucial communication gap. The goal is to give communities a role in identifying and defining problems and risks related to environmental health and in shaping future research approaches to such problems.
The primary objective of the NIEHS Partnership is to establish a new research paradigm that links members of a community, who are directly affected by adverse environmental conditions, with researchers and health care providers. Communitybased strategies to address environmental health problems require approaches not typically familiar to the research and medical communities. The distinctive needs of individual communities and their inhabitants are only rarely considered when environmental health problems are identified and medical interventions are devised. The Partnerships Initiative is designed to develop new modes of communication and to ensure that the affected community actively participates with researchers and health care providers in developing responses and setting priorities for intervention strategies.
Three grant awards, two of which will address Native American issues, were made in September 1994. Environmental investigators at Clark University in Massachusetts, in collaboration with Native Americans for a Clean Environment and The Citizen Alert Native American Program, are seeking to increase the awareness of Native American communities exposed to radiation contamination in the environment. The goal of this project is to foster a better understanding of health issues related to radiation exposure among members of Native American communities.
With the second grant, the State University of New York, Albany, in collaboration with St. Regis Mohawk Health Services, will design communitybased strategies for environmental health education, outreach, and training in the Akwesasne Mohawk community, which is adjacent to a Superfund site in the Great Lakes BasinSt. Lawrence River watershed.
The third grant was awarded to a community organization, Citizens for a Better Environment (CBE). This group, in collaboration with the Labor Occupational Safety and Health Program, the Center for Occupational and Environmental Health at UCLA, and the Community Health Foundation aims to educate community members and health care providers, promote adoption of pollution prevention measures, and establish a communitybased strategy for reducing community and worker exposure to environmental pollutants in southeast Los Angeles, a highly industrialized area that is home to a lowincome, 90 percent Hispanic or Latino population.
For more information about the Partnerships for Communication Initiative and additional awards made in fiscal year 1995, contact Allen Dearry, Ph.D., Program Administrator, 919/5414943.
New Media Projects From the Office of Disease Prevention and Health Promotion (ODPHP).
The Information Superhighway, the Internet, the World Wide Web, or simply the Net: What are the implications of this technology for those of us working in public health and risk communication? How will it change the way we work, learn, and interact with our colleagues and customers? Although the final answers to these questions are unknown, the Public Health Service (PHS) Office of Disease Prevention and Health Promotion (ODPHP) has taken this new medium seriously enough to begin several exploratory projects.
ODPHP's National Health Information Center now has a component focused on using interactive technologies for health communication. A new Science Panel on Interactive Health Communications, has been formed, which comprises leading experts in the science of media and communications. Later this spring, many of these issues will be explored at an invitational conference. Partnerships for Networked Health Information for the Public, to be held in Rancho Mirage, California, May 1416, 1995. Cosponsors of this conference include the Annenberg Foundation, several PHS agencies, the Health Care Financing Administration the Library of Congress, and the Departments of Commerce and Agriculture. Participation by Microsoft, PacBell, and GTE is also expected. The conference will focus on health information that helps people participate responsibly in medical care decisions for themselves and their families. Issues to be discussed include the Federal role in networked health information and information access, integrity, design, and quality. Information on this conference can be obtained from Mary Jo Deering at 202/ 2055968 or via the Internet at mdeering@oash.ssw.dhhs.gov.
The world of information distribution and use is changing. We would like to hear from you about your interest in our providing further information in this newsletter about the Internet and its related technologies. Would you like to be able to get the information contained in this newsletter via the Internet? Do you think we should develop a home page to present this information and link it to others? Should we provide readers with tips about how to enter the electronic world? We welcome your comments. Please call us at 404/6396206, or send email comments to Dr. Tim Tinker at txt2@atsod3.em.cdc.gov.
CDC Takes to the Internet: Agency's First New Journal in 30 Years Will Focus on Emerging Infections.
Emerging diseases—nasty, exotic, new afflictions that run the gamut from Brazilian hemorrhagic fever to cat scratch disease—are spurring the Centers for Disease Control and Prevention into an innovative venture in electronic publishing. To keep pace with the rapid emergence of deadly new pathogens, the agency is taking to the Internet with a new scientific journal—the first to specialize in new diseases and the first CDC—produced research publication since the agency took over the now widely quoted Morbidity and Mortality Weekly Report 31 years ago.
Volume 1, No. 1 of Emerging Infectious Diseases debuts with a personal note from CDC Director Dr. David Satcher vowing that this new journal will be part of an overall strategy to combat deadly new diseases by speeding communications among public health officials throughout the world.
Besides chronicling the discovery and spread of deadly new bugs, Satcher says that he hopes the new journal will "promote the exchange of infectious disease information through global electronic networks and bulletin boards."
With an estimated 30 million users, the Internet reaches more than 160 countries through a network of computers that makes it as easy to reach Zimbabwe as it is to telephone across town.
Unlike other research journals, which may cost hundreds of dollars a year, the electronic version of the new journal will be available free of charge, not only to health professionals but also to the public.
The first issue includes reports on the spread of the newly identified Barmah Forest virus, a mosquitoborne pathogen blamed for arthritislike symptoms among residents of Western Australia; an outbreak of food poisoning linked to contaminated lettuce; and plans by the World Health Organization to combat the spread of antibioticresistant germs.
Computer users with access to Internet can retrieve Emerging Infectious Diseases via the World Wide Web from http://www.cdc.gov; by file transfer from ftp.cdc.gov; or by electronic mail by sending a request to lists@list.cdc.gov and including in the body of your message: subscribe EIDTOC.
This article was adapted with the permission of the author, Mike Toner in the Atlanta Constitution on Saturday, February 4, 1995, page El.
Heart Valve Notification Program: Evaluation Techniques Used.
In 1990, a device manufacturer developed and began implementing a patient and physician notification program to provide information on the risk of heart valve strut fractures. Strut fractures are life threatening and can be successfully treated only by immediate surgical replacement of the valve. Overall, approximately one of three patients with reported valve fractures have survived. At that time, the manufacturer estimated that there were approximately 23,000 individuals in the United States and Canada who still had valves implanted. The research focuses on activities undertaken to provide for and evaluate the success of efforts to notify patients.
In September 1990, the manufacturer presented a plan to the U.S. Food and Drug Administration (FDA) to provide a grant to an outside organization to implement a program to identify, locate, notify, and enroll individuals with the heart valves in an implant registry. This was the first program implemented under the notification provisions of the Food, Drug, and Cosmetic Act in which a manufacturer sent information directly to patients about a device posing a substantial risk of harm to health. Historically, notification was provided to physicians, who decided whether and how to notify their patients about a device problem and steps to take to address the problem. The FDA closely monitored all phases of program development, implementation, evaluation, and modification.
Communication Approach
The risk communication effort focused on identifying, locating, and notifying as many heart valve patients as possible.
The manufacturer reached out to patients and their physicians by using public and targeted media, e.g., television, newspapers, consumer magazines, and health professional journals and newsletters. A key notification method was sending an information kit with cover letters from the manufacturer—one directed to patients and one to physicians. Information kits were sent first to physicians. The time lapse between sending letters to physicians and to patients was to allow physicians time to read the letter from the manufacturer and to prepare adequately for discussions with their patients. The physician kit included a sample of the information kit that would be provided to patients. The information provided to physicians addressed the risk of valve facture for each of their patients and requested that physicians send the names and addresses of their patients with the valves to the implant registry.
The letter also was designed to provide information to use in medically managing the patient as well as in counseling patients about issues that the letters to patients suggested they discuss with their doctors. A major goal of the notification program was to provide adequate information in the letter to patients to prompt discussions with their doctors about what their risk of valve fracture means, the symptoms of possible valve fracture, and what to do if symptoms appear. Patients also were urged to join the implant registry and were told that the costs of registry membership would be paid by the manufacturer. The implant registry provided patients with a wallet card, bracelet, or neck chain to identify them as having the valve to alert medical care practitioners and aid them in providing appropriate medical care in the event of an emergency. The implant registry also would send any important new information about the heart valve to patients and their physicians.
The FDA closely monitored the findings of the manufacturer's evaluation activities and resulting modifications to the program. The FDA also conducted an audit of the manufacturer's notification program as a check on the findings of the manufacturer's midcourse evaluation. Some key methods employed by the manufacturer and FDA are summarized in the following paragraphs.
Manufacturer's Approach
Key evaluation methods used by the manufacturer included (1) pre-testing the letter directed to patients; (2) pre-testing the letter to physicians; and (3) conducting a telephone administered questionnaire directed to a representative sample of 951 patients 6 months into the program. Contractors were hired by the manufacturer to conduct evaluations, analyze the responses, and report the findings of the questionnaires.
FDA's Approach
The FDA conducted an audit of the notification program based on that Agency's authority under the Food, Drug, and Cosmetic Act. The audit was conducted following the manufacturer's midcourse evaluation. The FDA used a telephone or inpersonadministered questionnaire directed to a sample of 318 patients. The interviews were conducted by FDA field investigators throughout the country who had been trained in patient interviewing techniques.
The findings from the FDA survey of patients were used to assess the effectiveness of the notification program with respect to patients' reactions to the program, primary sources of information, and the quality and completeness of information provided to patients.
Based on similar findings from both the manufacturers' midcourse evaluation and FDA's subsequent audit—that a significant percentage of patients said their physicians were not providing counseling on symptoms to look for and actions to take if symptoms appeared—as part of a midcourse program correction, the patient letter was modified to include information about symptoms and what to do if they occurred. Also, the manufacturer made available to patients a list of hospitals in the United States and Canada that performed open heart surgery.
Lessons Learned
Some major findings from the evaluation of the patient
notification program include the following:
1 . A majority of patients wanted information about significant risks to their health and actions to take to reduce adverse health consequences. Related evaluative findings include the following:
2. Pre-testing materials with appropriate surrogates for the target audience and seeking input from risk communication experts assisted in developing information that was helpful and understandable. Related evaluative findings include the following:
3. Relying on the secondary targeted audience (physicians in this case) to convey important risk and risk reduction information to the primary audience (patients in this case) is not always the most effective method. Related evaluative findings include the following: Of the patients who talked with their medical professional:
4. It is useful to employ a variety of channels to get information to the primary audience. Related evaluative findings include the following:
Evaluative findings from the manufacturer notification program were integrated into an FDA pointstoconsider document, Patient Notification Process, for recommending and conducting direct patient notification programs about medical devices posing hazards to health. The document is intended to be used by device manufacturers and by FDA staff for internal decision making and review of manufacturers' patient notification programs. Recommendations included in the document address the usefulness of pre-testing notification materials, the value of using a variety of communication channels to reach the primary audience, and the need to provide more complete risk and risk reduction information to the primary audience.
The National Lead Information Center (NLIC) Hotline and Clearinghouse (NLIC).
NLIC provides the general public and professional audiences with information about lead poisoning and prevention. The Center was established under a cooperative agreement with the U.S. Environmental Protection Agency (EPA), with support from three Federal agencies—EPA, the Centers for Disease Control and Prevention (CDC), and the U.S. Department of Housing and Urban Development (HUD). The NLIC is operated by the nongovernmental, notforprofit National Safety Council's Environmental Health Center.
The Hotline (18005323394 or LEADFYI) is available 24 hours a day, 7 days a week, in English and Spanish. Callers can request a basic information packet on lead in English or Spanish. The packet includes the EPA brochure Lead Poisoning and Your Children, three fact sheets, and a list of state and local contacts for additional information. Callers who have specific questions are referred to the Clearinghouse and can speak directly with an information specialist.
The Clearinghouse (1800424LEAD) or 18004245323 is available Monday through Friday 8:30 a.m. to 5:00 p.m. EST. Inquiries can be mailed or sent by fax, or a phone message can be left at any time. Trained information specialists answer specific questions on leadrelated issues in English or Spanish and provide referrals to federal, state, and local agencies and to others as appropriate. For more information about the NLIC's resources and activities, call 202/8331071 or fax 202/6591192.
Johnson, B.B. and Slovic, P. Explaining Uncertainty in Health Risk Assessment: Effects on Risk Perception and Trust.
Describing uncertainties in health risk assessments has been touted as a means to educate citizens, perhaps with the result of sharpening their perceptions of risk and increasing their respect for agency performance. Until recently no research had been done to test the validity of this assumption.
Johnson and Slovic describe the experimental approach they used in researching public response to uncertainty in risk assessments. They used simulated news stories to manipulate simple versions of uncertainty (e.g., a range of risk estimates, with and without graphic representations) and a few other variables. The researchers recruited residents of Eugene, Oregon, to read one story each, and then answer a questionnaire. Three studies tested between 180 and 272 subjects each. Two focus groups were also conducted to obtain more detailed responses to simulated news stories.
The following tentative conclusions were reached after the first year of research on public response to uncertainty in risk assessments:
Future research that builds on these initial results could examine several factors, among them, the role of trust (e.g., the effect of conflicting assessments of risk uncertainties by other policy makers; comments by local citizens on agency trustworthiness); the effect of different forms of uncertainty (e.g., methodological uncertainty versus population variability); or uncertainty about standards or action levels. It might also be fruitful to examine public response to descriptions of risk characterization that appear in legislation such as are found in the proposed Risk Communication Act of 1993.
The research conducted by Johnson and Slovic is funded as part of a cooperative agreement with the Environmental Protection Agency (EPA). Information about this study is available from Dr. Lynn Desautels EPA, at 202/2606995.
Russian and American Scientists Join Forces to Evaluate the Health Impacts of Radiation in Russia.
The health risks associated with accidental exposure to acute or chronic radiation have been of increasing international concern since the late 1940's. In January 1994, a major step forward was taken to address this issue when the United States and the Russian Federation signed a Russian-American Agreement on Cooperation in Research on Radiation Effects for the Purpose of Minimizing the Consequences of Radioactive Contamination on Health and the Environment.
The Agreement laid the foundation for a joint United StatesRussian Federation research program to study the health and environmental effects of radiation. This program is likely to make significant contributions to understanding the risks associated with radiation exposure.
A Joint Coordinating Committee for Radiation Effects Research (JCCRER) was established and convened in October 1994 to implement a bilateral research program. Committee members from the United States include representatives from the Department of Energy (DOE), the Department of Health and Human Services, the Department of Defense, and the Nuclear Regulatory Commission. The DOE is the Executive Agent for the United States in this effort.
Initial research will focus on community and worker population studies at the Mayak Production Facility and the Chelyabinsk region near the South Ural Mountains. One of the world's most significantly contaminated areas is in the South Ural area of the Russian Federation. In particular, data on the Chelyabin.sk population afford an important opportunity to determine the risk coefficient associated with chronic, lowlevel exposures to radiation and to compare it to risk estimates previously obtained from populations acutely exposed to radiation.
In January 1995, the DOE Office of International Health Studies led a delegation of U.S. scientists to Chelyabinsk to begin the joint development of shortterm feasibility studies. Typically, feasibility studies are conducted before largerscale projects or studies are initiated. The feasibility studies include the assessment of cancer risk and other health risks in populations living near the Techa River and the Mayak facility and the investigation of plutonium metabolism and the associated health risks among workers at the Mayak facility.
For more information, contact Mr. Ed Washburn, DOE, Office of International Health Studies, EH63at 301/9032335.
Elaine Vaughan, Ph.D., is an associate professor in the Department of Psychology and Social Behavior in the School of Ecology at the University of California, Irvine. Dr. Vaughan received her Ph.D. in psychology from Stanford University and studies various aspects of risk management in society. She is a member of the National Academy of Sciences (NAS) on risk characterization.
Dr. Vaughan's current research focuses on social and other contextual factors influencing adaptation to and perceptions of technologic and environmental risks, the basis of variability in non-expert risk perceptions, and risk judgments of diverse groups, such as migrant farm workers, in the United States. She has authored several publications on these topics including a recent paper on the effects of socioeconomic factors on the risk responses of immigrant farm workers exposed to pesticides. Additional information about Dr. Vaughan's research activities and interests can be obtained from her at 714/8247184.
Interactive Technology in Health Education: Virtual Reality, Distance Education, Electronic Classroom.
The inaugural international conference sponsored by State University of New York (SUNY) at Plattsburg and High Techplantations is pleased to announce the August 10-12, 1995, conference, Interactive Technology in Health Education: Virtual Reality, Distance Education, Electronic Classroom. The conference is being conducted in conjunction with the opening of the new Virtual Reality laboratory at SUNY Plattsburgh, that is dedicated to using and developing distance learning and the electronic classroom as an educational tool. Nurse and allied health educators, librarians, and technology experts are invited to submit proposals. Presentation proposals are invited to focus on these conference themes: (1) virtual reality teaching applications; (2) teaching and learning strategies for electronic classrooms; and (3) distance education strategies for interactive audio and video environments. Additional information about the conference and call for papers can be obtained from Dr. Virginia L. Barker at 518/ 5644069, SUNY Plattsburgh.
The Health Risk Communicator is published three times per year by the Subcommittee on Risk Communication and Education, Environmental Health Policy Committee, Public Health Service.
Editor in Chief: Barry L.
Johnson, Ph.D.
Managing Editor: Tim Tinker, Dr.PH
Editorial Board: Mary Jo Deering, Ph.D., Bryan
Hardin, M.D., Max Lum, Ed.D., Bonnie Malkin, Dorothy Moore, Maria Pavlova, M.D.,
Ph.D. and Chris Schonwalder, Ph.D.