Organized Feedback

In small working groups, participants gave feedback regarding:

• Design of an ongoing campaign development workgroup.¹
• Recommendations for issues to be addressed at the April 2000 ACERER workshop on screening.
• Additional audience research needs.
• Preparation for audience messaging: What key information needs to be communicated?

The workgroup that worked with NCI and CDC to plan the January workshop included individuals familiar with the following perspectives, groups, or organizations:

• Hanford downwinders
• Alliance for Nuclear Accountability
• ACERER Subcommittee for Community Affairs
• Hanford Health Information Network
• NAACP
• Physicians for Social Responsibility
• A Physician
• State Public Health Department (Radiological Health Section)
• NCI/CDC/ATSDR staff

Workshop participants in the small group that discussed this topic proposed that the new "Campaign Development Group" include the following types of representation (this is a list of perspectives to be represented-not specific organizations):

• Activists (2)
• Downwinders (2)
• African American
• Health educator
• Health professional organization
• Hispanic from community and migrant health center
• Native American
• Physician
• State Public Health Department: health education and radiation control (2)
• Local health department
• Thyroid Foundation

Criteria for inclusion in workgroup:

• long-term view
• a view broader than I-131 and thyroid cancer
• ability and willingness to make necessary time commitment
• ability to do outreach to their communities
• work toward geographic diversity

It was also agreed that workgroup members need to be reimbursed equitably for the work they do on this project, and that the federal agencies involved must commit adequate staffing to this effort.

2. Recommendations for topics to be addressed at the ACERER meeting to address screening issues

• Definition of screening



• Feasibility of identifying higher- and lower-risk groups



• Basis for decisions regarding policies on screening-scientific analyses alone, versus incorporation of social justice considerations



• Risks and benefits of screening for cancer and non-cancer thyroid illness



• Incidence of false positives from most recent Hanford Thyroid Disease Study thyroid cancer medical evaluation



• Review of science regarding noncancer thyroid outcomes of I-131 exposure



• Cumulative effects: how do multiple exposures change a person's risk classification?



• Progress report on research into other radionuclides



• Examination of other screening programs around the world



• Potential funding mechanisms for screening programs; comparison of other screening programs



• Case study of affected citizens



• Operating principles

A workgroup will help plan the ACERER workshop. Individuals working on this list offered to participate. They were: John Bagby, Trisha Pritikin, Henry Royal, Robert Spengler, Oscar Tarrago, J.B. Hill, David Becker, and Steve Simon. Tim Takaro, Keith Baverstock, Owen Hoffman, and Kristin Shrader-Frechette also expressed interest in participating in the planning process.

3. Recommendations for Additional Audience Research

• Who are we trying to reach? This must be determined before audience research begins.

Once this is determined, the research would address:

• Demographic research on language, culture, education, and literacy levels.



• Preferred sources of information.



• Psychographic data -- beliefs/attitudes, epidemiologic data, role of the media.



• Message and strategy testing -- look at research and campaigns that have already been done. Do a meta-analysis to transform and digest that data to determine audience needs.



• Process evaluation: Was the campaign done on time, within budget?



• Outcome evaluation: What were the campaign's effects? What was the reach, frequency, and duration of communications? How many were exposed over a period of time? What were the effects on knowledge, attitudes, and behaviors? What were the long-term effects on behaviors?

4. Preparation for Audience Messaging: What key information needs to be communicated?

Give historical context, discuss research, production, and testing. Discuss I-131 and other radionuclides. Discuss local testing, global fallout, associated social and ethical issues, and general risk factors (e.g., milk, and gender) so that people can self-identify. Give history of government action and where there is still work to be done. Describe the work that continues on outstanding issues to ensure that exposures from testing won't happen again.

• "Hot spot" audiences should receive:
  
  • All the information that the general U.S. population is receiving (see above).
  • Information on general risk factors plus multiple exposures so they can self-identify.
  • Assurance that health care providers and other agencies (e.g., managers at DOE/contractor facilities) are being told about this.
  
  
  
• Self-identified as at-risk or other concerned people should receive:
• Information that the above audiences receive.
• Information on what to do if you don't have a health care provider.
• Details on the ongoing work regarding outstanding issues (screening, compensation, etc.)
• A fact sheet from an official organization to bring to a clinic or physician's office.



• Health care providers should receive:
• Everything the above two audiences receive and additionally, resources on screening for all thyroid disease.



• Payers of Healthcare (HMOs, government programs) and insurance commissioners should receive:
• Clinical practice guidelines or Standards of Care.



• Workers (research, production, mining, etc.) should receive:
• All information that "hot spot" and self-identified at-risk people receive.



• State Health Departments should receive:
• All information that health care providers receive so they know they will also be disseminators, and must be kept informed as campaign progresses.



• State Regulators should receive:
• All the same information that health care providers and state health departments receive.
• Still need to determine the right organizations to communicate messages to various target audiences.
  
  

Summary Comments

Anne Lubenow, Acting Co-chief of the Health Promotion Branch in the Office of Cancer Communications, NCI, thanked all of the participants and expressed NCI's appreciation for everyone sharing their views. She encouraged participants to contact the NCI staff as needed. She also strssed that although we don't yet have all of the answers, we are on the road to developing a campaign, and have identified some common ground, as well as areas that need further discussion.

Joan Morrissey, Health Communicator with the Radiation Studies Branch, CDC, followed by thanking the workgroup for the tremendous amount of work they put in to planning this successful workshop. She specifically noted her desire to put together a Native American caucus, as suggested by Robert Holden. She reiterated the agencies' commitment to developing and implementing this program and doing it right.

A sampling of participants' closing remarks

"It's been really heartening for me as a person from a significantly impacted community to feel that all these people actually care about people like me, finally, because there are a whole lot of times when I don't feel that way. And I want to thank the agencies involved for never telling us that we couldn't discuss something. We were able to put all the issues on the table and discuss everything that I think people wanted to talk about. I feel very good about this process."

"I see an incredible variety of talent, knowledge, and goodwill in this room, and I see a huge opportunity to make a truly positive impact on all of society."

"A grave concern in all of this is that these issues have the ability to divide people in this country rather than unite them. If the same spirit of bringing different people together here could be the spirit of whatever moves out of it, I think we can go very far."

Next Steps

Nelvis Castro, Acting Associate Director for Cancer Communications at the NCI, thanked the participants for their candor and their dedication to this effort. She stated that the summary of the meeting would be posted on the listserv for a 2-week comment period, then finalized and distributed to interested parties. Dr. William Raub has committed to bringing the report to Secretary Shalala's attention. A Campaign Development Group will be formed and will review the draft communications plan and help with future activities. She estimated that the plan will take about six months to draft. The plan will be refined and modified as necessary based on feedback received from this group. She also hopes to learn about the communications channels that participants use to reach their constituents to expand the reach of the messages that are developed for this campaign.

Owen Devine, Ph.D., chief of the Risk Assessment and Communication Section, Radiation Studies Branch, CDC, talked about future plans to study other radionuclides and global fallout. A feasibility assessment will be presented to ACERER in June 2000 and to Congress in July 2000. It will be an assessment of the scientific feasibility of estimating dose and risk to the U.S. population from global fallout, including NTS. There will be a large discussion of communications in the report as well. He thanked all of the participants.

Dr. Alan Rabson closed the meeting by repeating the apology for NCI's delay in finishing the Nevada Test Site Fallout report. Processes have been put in place at the Institute so that such an "unconscionable delay" will never happen again. He called the workshop an "historic meeting" that has given NCI a new understanding and commitment to working with community representatives. He assured participants that NCI intends to follow through.

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