April 1996

A Publication of the Subcommittee on Risk Communication and Education Public Health Service (PHS)

Federal Focus on Lead Poisoning Prevention Efforts

Nine Federal agencies have at least partial responsibility for educating public and health professionals about the hazards associated with lead. Combining forces under Centers for Disease Control and Prevention (CDC) leadership and the Education Subcommittee of the Federal Interagency Lead-Based Paint Task Force, these agencies have collaborated on several projects.

In November 1994, seven of the Federal agencies, including CDC, and representatives from state and local health agencies, community-based organizations, and advocacy groups, met in Atlanta to share ideas on health education for the prevention of childhood lead poisoning. Among the topics discussed were the implications of National Health and Nutrition Examination Surveys (NHANES III) data, which showed marked reductions in overall blood lead levels but continued significant problems in some populations. The issue of universal and targeted educational efforts and the role of the Federal Government's educational messages were discussed. Considerable debate focused on the use of health education to change individual behavior compared to the use of other methods of changing physical, political, social, or economic conditions. The group identified areas needing improved coordination and other gaps in information or technology (for example, the computer technology needs of the National Lead Information Clearinghouse).

Each agency looked internally at what it could do to improve its educational efforts. A recurring theme during the conference was the need for the group as a whole to better evaluate its educational and communication interventions. Participants decided that several routes could be taken to accomplish that task. CDC agreed to organize a conference on improving skills in measuring process, impacts, and outcomes of educational and communication efforts. That conference is scheduled for March 1996. Also suggested was the development of written case studies to allow federal, state, and local public health educators to share their experiences with educational interventions and "lessons learned." Some of the case studies are being developed in conjunction with the conference.

Focus on CDCs Lead Education and Prevention Activities

Since the conference was held, CDC has worked with a contractor through CDC's Office of Communications to conduct a formative evaluation of a childhood lead poisoning grant program. The State of California is developing low-literacy materials in the form of a flip chart for public health nurses to use to educate parents of lead-poisoned children, CDC assisted in testing the materials in focus groups to determine their understandability and usefulness for the primary target audience, parents, and the secondary audience, public health nurses.

CDC also has provided funding and technical support to the National Lead Information Center, a joint federal project consisting of a national hotline for public inquiries and a clearinghouse of lead information for professionals.

CDC has collaborated with other federal, state, and local agencies in developing educational materials, thus ensuring continued, consistent messages. Through consultations, speaking engagements, workshops, networking, and technical and financial support, CDC has and will continue to work diligently to maintain constant communication with all involved in the effort to communicate and educate the public and health professionals about the importance of preventing lead poisoning among children.

Persons interested in learning more about federal lead poisoning prevention education efforts can contact Niki Keiser at (770) 488-7330. Ms. Keiser is a health education specialist at the National Center for Environmental Health, Centers for Disease Control and Prevention.

Partnerhsips Update

Association of Occupational and Environmental Clinics (AOEC) Internet Resources for Health Care Providers in Occupational and Environmental Health

AOEC represents a network of 54 occupational and environmental clinics widely dispersed throughout the U.S. and Canada. The clinics must deal quickly and efficiently with a variety of rapidly changing medical challenges. To meet the need for consultation among health professionals, an Internet mail list called OEM-List has been established among AOEC members and others. The list was begun largely through the voluntary efforts of Gary Greenberg, M.D., M.P.H., in the Division of Occupational and Environmental Medicine, Duke University. Maintenance of the list is currently funded in part by the Telecommunications and Infrastructure Assistance Program, National Telecommunications and Information Administration, U.S. Department of Commerce, the Duke University Medical Center, the Agency for Toxic Substances and Disease Registry, and the AOEC.

The OEM-List allows a rapid exchange of information, including same-day consultations. It also provides a forum for announcements, dissemination of text files, and academic discussion.

Items drawing heavy interest include a discussion of the components of a respiratory screening exam, a query from a family practice physician about the possible link between interstitial pneumonitis and oil-based paints, Sick Building Syndrome problems, HIV notification for emergency responders, the value of k-x-ray fluorescence for adults heavily exposed to lead as children, and MMWR articles of particular interest.

The network has been used in consultation reports as another source of information for verification of a diagnosis. The growing number of international subscribers is providing subscribers with a truly global perspective.

The OEM-List includes a WWW Page and a gopher node (see following access instructions).

Include the message: Subscribe Occ-EnvMed-L (Use message line. Put nothing in the subject line.) Once you subscribe to the list, you will receive directions on how to post a message to all subscribers.

Minority Health

Prominent among the goals of the National Institute for Environmental Health Science (NIEHS) is support of research aimed at achieving environmental justice for all populations. Assays of the health effects of environmental pollution and the regulations based on such assays are often performed and promulgated with little or no input from affected communities. The program "Environmental Justice: Partnerships for Communication" is intended to institute mechanisms to bridge this crucial communication gap so that affected communities play a demonstrable role in identifying and defining problems and risks related to environmental health, and in shaping research approaches to such problems.

Development of community-based strategies to address environmental health problems requires approaches not always familiar to the research and medical communities. The distinctive needs of individual communities and their inhabitants are only rarely considered in identifying environmental health problems and devising appropriate medical intervention tactics. The "Partnerships" program is designed to develop new modes of communication and to ensure that the community actively participates with researchers and health care providers in developing responses and setting priorities for intervention strategies.

In 1994, awards were made to a number of organizations: Clark University in Worcester, Massachusetts, to address risk management in Native American communities exposed to radiation contamination from DOE sites in Oklahoma and Nevada (Dianne Quigley); the Research Foundation at the State University of New York, Albany, to assist a Mohawk community in the Great Lakes Basin-St. Lawrence River watershed adjacent to a PCB contaminated Superfund site (Katsi Cook); and Citizens for a Better Environment to aid a Latino population in a heavily polluted area of Southeast Los Angeles (Michael Belliveau). All of the affected communities are made up of predominantly low-income populations with little education and unique cultural and language barriers that predispose them to isolation.

Each project will involve community leaders with scientists, health care providers, and educators to develop community-based strategies to identify environmental health problems and reduce risk.

For more information about the NIEHS Partnerships for Communication in Environmental Justice, call Allen Dearry, Ph.D., NIEHS Division of Extramural Research and Training, at (919) 541-4943.

Special Report (Part II of a Two-Part Series)

In-House Focus Group Testing at FDA: Lessons Learned—The Tips and Traps of Successful Focus Groups Background:

After years of experience using contractors to conduct focus groups for FDA, the Division of Device User Programs and Systems Analysis (DDUPSA/FDA) staff decided to bring focus testing in-house. It seemed that an in-house approach would be faster, easier, and cheaper than using a contractor. Based on our experiences to date, the in-house approach proved to be cost effective, but not faster or easier than using a contractor. The cost savings occurred primarily in the moderating and report writing areas. Not only did the focus group projects cost less when they were conducted with in-house moderators, but the insight into the results that resulted from directing the entire focus group process was invaluable.

For most of our projects, we continued to hire a contractor for the recruitment phase of focus group testing because of the time and resources necessary for successful recruiting. After receiving training at the RIVA (Research in Values and Attitudes) Moderator Training School based in Bethesda, Maryland, the staff launched into a broad spectrum of focus group projects, including these:

Through these projects, the DDUPSA staff learned many lessons about setting up an in-house focus testing program that may be useful to others considering a similar program.

A value-added aspect of utilizing in-house staff to direct and facilitate focus group projects is the FDA perspective and understanding that in-house moderators bring to each project. It is easier to bring an in-house moderator up to speed on a project because he or she is already familiar with the inner workings of FDA and has easy access to subject matter experts. To complement this FDA perspective, in-house moderators must strive to maintain objectivity by acting as consultants to the clients, not as stakeholders in the project.

When resources permit, an experienced moderator is teamed with a novice moderator. Teaming multiple staff members on focus group projects builds skills and confidence. The new moderator works with another moderator to direct the project and co-moderate the focus groups. In this way, moderators provide each other with feedback on how the project is progressing and how well the focus group sessions are run.

In facilitating focus groups, we found that experience allows development of moderator skills such as probing, quick thinking, living with the silence of a group, not talking too much (e.g., putting words in the mouths of participants) and flexibility (e.g., if the order of the questions or the questions themselves aren't working, change them; if new questions arise, use them).

It is critical to educate clients by explaining the steps in the focus group process. Based on our experiences, some clients need this information to work effectively on the focus group projects with realistic expectations of what can be accomplished and how it can be accomplished. Clients often need guidance in narrowing the research objective, understanding the appropriateness of open-ended questions for focus groups, as well as observing focus groups (e.g., maintaining objectivity, writing "walk-away" messages that facilitate report writing).

Testing the moderator's guide with a pilot group composed of FDA staff helps the moderators determine if the questions in the guide work.

Report writing is an intensive, analytical, time-consuming affair. Large blocks of uninterrupted time are necessary to analyze the transcripts and develop the report. The time it takes to write the report depends on the complexity of the issue and the number of groups conducted. Our experience shows that a week may be necessary to analyze and synthesize the transcripts and draft the report for two to six focus group sessions.

Recruiting can be the weak link in the focus group process. It is the responsibility of the focus group project directors to work with clients in developing realistic recruitment goals. If the recruitment criteria are too narrow, it may not be possible to recruit participants. Using an experienced contractor for this part of the focus group process is critical. A contractor needs experience in recruiting the subset of the population you need (e.g., physicians). The contracting recruiter needs to be flexible and creative in recruiting, use multiple approaches (e.g., phone calls, gatekeeper approach, outreach into the community), and be willing to tell you in a timely fashion whether or not recruiting is progressing so you can make adjustments if necessary.

To solicit dentists' reactions to FDA's guidelines on the use of dental radiographic examinations, a University of California-Los Angeles (UCLA) dentist involved in the focus group project undertook all phases of the recruitment process. She contacted a gatekeeper, the president of the Southern Maryland Dental Society, who in turn solicited dentists through a newsletter to participate in the focus group. He provided names of private practice dentists who expressed a willingness to participate. The UCLA dentist contacted each prospective participating dentist. By using the gatekeeper approach and a dental professional who could recruit other dentists on a collegial basis, we successfully recruited the desired participants.

Phone calls to women who had previously expressed interest in participating in focus groups was the recruitment method used to solicit reactions of women to contraceptive efficacy tables and graphs for uniform contraceptive labeling. Phone calls were successful in recruiting women for these groups because the recruitment criteria were very broad. The requirements for recruitment were these: the women were currently using or considering using a birth control method; had not earned a bachelor's degree or a graduate degree; had no more than one health, science, or mathematics class beyond the high school level; and had not participated in a focus group within the past year. For an "easy'' pool of potential recruits, this method worked.

By distributing flyers to obstetricians' offices and a health department, we attempted to recruit women without a college education who had never had an ultrasound exam and were pregnant or considering having children in the very near future. This recruitment method yielded no responses. We believe the lack of response was related to the passive presentation of flyers in a health setting that did not provide adequate motivation for response. Using an active gatekeeper might have been more successful.

Very narrow recruitment criteria were in place to test condom messages. The clients were looking for people with a high school education or less, and who had had more than one sex partner in the past 60 days. The contractor was unsuccessful in recruiting the desired number of participants with the specified demographic mix. We hypothesized that the lack of success resulted for a couple of reasons. First, it was believed that potential participants were reluctant to admit having more than one sex partner in the past 60 days. Because of the narrow recruitment criteria, it might have been more effective to conduct more direct outreach into the community.

Second, transportation was a problem for prospective participants without cars; the focus group facility was not in their neighborhood and taxis could not be counted on to arrive in a timely manner. Holding the focus group sessions in the community also might have increased the participant rate.

The contractor utilized a nurse (subject matter expert) to develop recruitment strategies for contacting nurses to participate in the focus group. Although the desired number of critical care and operating room nurses was obtained, a small sample of hospitals was represented by the participants. Had more hospitals been represented, more divergent opinions might have been expressed.

The contractor was unsuccessful in recruiting physicians for this project. This might have been the result of having a non-physician conduct the recruitment, who was unable to break through the physician's gatekeepers. As a result, we turned to individual interviews of health professionals at an American College of Emergency Physicians (ACEP) meeting to solicit reaction to uniform medical device labeling. An experienced physician recruiter might have been more successful.

It is our hope that the tips and trips outlined by our experience at the FDA can help other agencies successfully bring focus group testing in-house. Because recruitment is time-consuming and very resource-intensive, this step of the focus group process is often best left to an experienced contractor. Being aware of the difficulties that can arise in recruitment, choosing an experienced contractor, and carefully working with that contractor can lead to successful focus group recruitment—a pivotal step in the focus group process.

Additional information on FDA's experiences with focus group testing can be obtained from Paula Silberberg at the Center for Devices and Radiological Health/FDA at (301) 443-2436.

Environmental Databases

Fewer emergencies, injuries, and deaths involving hazardous substances are expected to occur thanks to lessons learned by tracking these events.

The Hazardous Substances Emergency Events Surveillance database was started in 1990 by the Agency for Toxic Substances and Disease Registry (ATSDR) of the U.S. Department of Health and Human Services. The database contains information reported by 11 participating states on hazardous substances emergencies stemming from transportation and fixed-facility accidents. Analysis of the database reveals risk factors and health effects of these accidents.

ATSDR and state health departments are now using information from the database to educate emergency responders and others about where, when, and how hazardous substances emergencies are likely to happen. This knowledge could help prevent future emergencies and decrease the number of injuries and deaths when incidents occur. Database information can also be used to train physicians and emergency responders to watch for the signs, or health effects, of chemical ingestion.

ATSDR and state health departments share information from the database with state emergency response and planning commissions, firefighters, hazardous materials teams, emergency medical personnel, physicians, and industries. States have reported to ATSDR they are using the information to improve training and emergency response procedures, and to improve enforcement of state and federal regulations and codes for production, storage, transportation, and use of hazardous substances.

Analysis of the data collected for 4 years by ATSDR scientists revealed the following:

Although volatile organic compounds, herbicides, and acids are the chemicals most commonly released during emergencies, most injuries are caused by less common releases of highly toxic substances. For example, chlorine was involved in only 3 percent of accidents in 1993, but caused injury in 32 percent of those accidents.

For information about the database, contact Dr. Ramana Dhara, Agency for Toxic Substances and Disease Registry, 1600 Clifton Road, NE, Mailstop E31, Atlanta, GA 30333; Telephone: (404) 639-6203; e-mail: ixhl@atsdr2.em.cdc.gov.

(This article was reprinted from Energy and Transportation Network News, Vol.5, No.4, Winter 1995, pages 1 and 3).

Technology and Innovation

National Information Center on Health Services Research and Health Care Technology (NICHSR)

The 1993 NIH Revitalization Act created the National Information Center on Health Services Research and Health Care Technology (NICHSR) at the National Library of Medicine (NLM) to improve "...the collection, storage, analysis, retrieval, and dissemination of information on health services research, clinical practice guidelines, and on health care technology, including the assessment of such technology."

NICHSR coordinates the development of new services and the enhancement of existing products. The Center works closely with the Agency for Healthcare Research and Quality (AHRQ) to improve the dissemination of the results of health services research, with special emphasis on the growing body of clinical practice guidelines and technology assessments.

For example, HSTAT (Health Services/Technology Assessment Text) is a free, electronic resource that provides access to the full text of documents useful in health care decision making. HSTAT includes clinical practice guidelines, quick-reference guides for clinicians, and consumer brochures supported by AHRQ; AHRQ technology assessment reports; National Institutes of Health (NIH) consensus development conference and technology assessment reports; NIH Warren G. Magnuson Clinical Center research protocols; HIV/AIDS Treatment Information Service (ATIS) resource documents; Substance Abuse and Mental Health Services Administration, Center for Substance Abuse Treatment (SAMHSA/CSAT), treatment improvement protocols; and the Public Health Service (PHS) Preventive Services Task Force Guide to Clinical Preventive Services.

NLM provides access to HSTAT through a number of electronic methods. Users access it through the Internet or direct dial. Internet users can reach it through the World Wide Web (WWW), through telnet and ftp (file transfer protocol), or with software clients such as Gopher.

To access HSTAT via the WWW, user must have a Web browser such as Mosaic or Netscape that is available for UNIX, MacIntosh, and PC Windows platforms. Specify the URL http://text.nlm.nih.gov/.

Through the WWW, it is possible to view the text, graphics, and tables of HSTAT documents in a form very similar to the printed copy. Users can browse the table of contents of each document, from which a particular section may be selected, or they can find a section of interest by conducting a search for words or phrases. Once selected, a section can be viewed, printed, or downloaded.

For users without WWW capability, NLM has developed a menu-driven interface to HSTAT. The NLM Full-text Retrieval System (FTRS) provides a table of contents for each document from which a particular section may be selected for viewing or downloading, and the ability to search by words or phrases.

To access HSTAT via NLM's FTRS, users of Grateful Med® (6.0 or higher) can obtain a script that will load a Grateful Med menu option for HSTAT. Contact NICHSR for a disk copy and instructions or use the Internet to ftp the script from the nlmpubs/hstat/gmhstat directory on nlmpubs.nlm.nih.gov. This script accommodates modem access only.

Users can also search HSTAT via the FTRS by telneting to text.nlm.nih.gov or by dialing 1-800-952-4426 and logging in as hstat or HSTAT. FrRS users need the ability to emulate a VT 100 or VT 102 terminal when telneting or dialing into the system.

The newly merged database HealthSTAR is an excellent source of information on published practice guidelines and technology assessments. In early 1996, the HEALTH (Health Planning and Administration) and the HSTAR (Health Services/Technology Assessment Research) databases were merged into one database, HealthSTAR. It includes citations from MEDLINE, CATLINE, citations indexed by the American Hospital Association (AHA), plus additional citations not appearing in any other MEDLARS databases. HealthSTAR includes citations to journal articles, technical and government reports, books, book chapters, and meeting abstracts.

HSRProj, a database of citations to research-in-progress funded by federal and foundation grants and contracts, became generally available in 1995. HSRProj contains project descriptions about health services research in progress before results are available in a published form.

DIRLINE, NLM's DIRectory of Information Resources onLINE, has a special subfile covering health services research organizations, including those involved in technology assessment and development of practice guidelines.

HSTAT, HealthSTAR, HSRProj, and DIRLINE are all available through Grateful Med. To make HSR searching even easier,

Grateful Med has been enhanced through the development of tailored HSR search screens. Additionally, HealthSTAR, HSRProj, and DIRLINE are available 24 hours a day on NLM's MEDLARS network of databases and databanks. Contact the NLM MEDLARS section to request an NLM application packet: 1-800-638-8480.

In addition to these electronic resources and online databases, NICHSR and other NLM staff develop guides, fact sheets, bibliographies, and other products targeted to health services researchers. Like other NLM publications, HSR publications are available via ftp over the Internet from NLM's publications server and the NLM Gopher.

NICHSR supports a number of intramural and extramural research and development projects designed to improve access to useful health services research data. Current efforts include development of a database of health services research datasets suitable for particular research questions; expansion of the Unified Medical Language System (UMLS®) Metathesaurus® to improve its utility in retrieving health services research information and data; and funding of extramural testing and demonstration sites to conduct research and evaluation involving the creation and use of computer-based patient records.

For more information on NICHSR, contact:
National Information Center on Health Services Research and Health Care Technology (NICHSR), National Library of Medicine; 8600 Rockville Pike; Building 38, Mail Stop 20; Bethesda, MD 20894;(301)496-0176 (Voice); 1-800-272-4787 (Select 1,6,3,2) (Voice); (301)402-3193 (FAX); nichsr@nlm.nih.gov (Internet); http://www.nlm.nih.gov/nichsr/nichsr.html.

Associations

The National Association of Professional Environmental Communicators (NAPEC)

NAPEC is a non-profit professional organization founded in the belief that informed environmental decision making requires an open dialogue among all parties responsible for addressing environmental problems. NAPEC believes the public is an integral part of this process and that active communication with and participation by the public is essential. NAPEC provides forums for exchanging ideas, debating issues, and disseminating information related to environmental communication.

Informed environmental decision making hinges on the strength of available information and opportunities for interested parties to participate in the process. NAPEC was founded to provide a national focus on bringing together a diverse range of communicators currently addressing environmental issues scientists, environmental groups, government officials, teachers, artists, risk communicators, industry representatives to examine and improve the ways in which environmental information is communicated and decisions are made.

NAPEC was incorporated in 1990 and is now actively recruiting members, as well as groups interested in starting local and regional chapters across the country.

For more information about NAPEC membership, please call the NAPEC Hotline at (415) 487-8727.

International

The Risk Communication Network, initiated by the World Health Organization (WHO) 4 years ago, provides a forum for persons involved and interested in risk communication to exchange ideas, identify key issues, and share experiences and information. The goal of the Network is to address the gap between research and practice in risk communication. The Network currently has 170 members, most, but not exclusively, based in European organizations.

The Network will host its first annual conference on April 15, 1996, in London. The broad aim of the inaugural meeting is to identify the nature and range of current issues in risk communication in Europe, focusing on the following:

To obtain more information about membership in the Network or the 1996 conference, contact:

Hayley Slade Risk Communication Network Administrator The Registry UEA Norwich, UK NR4 7TJ Telephone: +44 (0)1603 593 016 Fax: +44 (0)1603 250 035 E-mail: H.Slade@uea.ac.uk.

Ann Fisher, Ph.D., is a senior research associate in the Department of Agricultural Economics and Rural Sociology at the Pennsylvania State University. In 1995, Dr. Fisher was designated as a Fellow in the Society for Risk Analysis. She authored nearly 45 peer-reviewed publications and another 2 dozen books, chapters, and reports on varying risk communication topics. Dr. Fisher serves on the Editorial Council for Risk Analysis, and Risk: Health, Safety & Environment. She also serves on the National Research Council's Committee on Review and Evaluation of the Army Chemical Stockpile Disposal Program.

Dr. Fisher joined Penn State in September 1990, with a joint appointment to the Environmental Resources Research Institute. She managed the Risk Communication Program at the U.S. Environmental Protection Agency from 1987 to 1990 and analyzed the benefits of environmental regulations from 1980 to 1987. Her research interests focus on how risk perceptions change in response to new information; how to communicate effectively about small risks, such as chemical residues in food and water; and how to evaluate the effectiveness of information programs. Most recently, Dr. Fisher served as principal investigator on an interdisciplinary team that is developing and demonstrating methods for estimating regional impacts of human climate change. A related project is examining how perceptions of global climate change are related to people's willingness to take individual or public actions to mitigate or adapt to those changes

To find out more about Dr. Fisher's research and risk communication activities, contact her by telephone (814) 865-3143 or fax (814) 865-3746.

The National Environmental Health Association (NEHA) will conduct 1-day risk communication workshops for health professionals at the following locations in 1996. These workshops were developed under a cooperative agreement from the Agency for Toxic Substances and Disease Registry. For more information, contact Larry Marcum of NEHA at (303)756-9090, ext 303.

The Health Risk Communicator is published three times each year by the Subcommittee on Risk Communication and Education, Environmental Health Policy Committee, Public Health Service. Health risk communication practitioners and researchers are the primary target audience. The newsletter's 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 Communicator welcomes your contributions and comments about current health risk communication programs, activities, and issues. Send your news and information for publication to the managing editor, Tim Tinker, DrPH, at the Agency for Toxic Substances and Disease Registry (ATSDR), 1600 Clifton Road, NE, NIS E33, Atlanta, Georgia, 30333. Dr. Tinker's telephone number is (404) 639-6206, fax (404) 639-6208, and Internet address txt2@atsod3.em.cdc.gov.

Editor-in-Chief: Barry L. Johnson (ATSDR)
Managing Editor: Tim Tinker (ATSDR)
Editorial Board: Max Lum (NIOSH), Dorothy Moore (NLM/NIH), Maria Pavlova (DOE), and Chris Schonwalder (NIEHS)

April 17	New York Medical College, Valhalla, NY
June 5	Columbus, OH
June 28	NEHA annual conference in Chicago

The Health Risk Communicator