ORRHES Meeting Minutes
October 21, 2003
Guidelines and Procedures Work Group (GPWG). Ms. Galloway, the GPWG Chair, reported that the members held a joint meeting with COWG to discuss the development and revision of work group minutes. The former PHAWG Chair created a procedure to develop meeting minutes, but no formal process was established for the other work groups. After ATSDR and work group members discussed the best strategy to revise meeting minutes, GPWG integrated comments from these deliberations and the original PHAWG procedure to create a new process to develop meeting minutes for all work groups.
GPWG’s plan proposes to expand work group minutes from a minimal listing of discussion topics, resolutions, action items and recommendations. Additional details are extremely important, particularly since public comments and concerns are captured during work group meetings. The minutes are not intended to be verbatim transcripts; instead, abbreviated records of discussion should be developed. The minutes should accurately and objectively capture issues discussed at meetings. Effective minutes can be used in many settings by a variety of audiences to review previous activities and actions; document issues and concerns previously addressed; measure productivity and participation; assess leadership; identify individual efforts; and obtain insight.
Completeness of the minutes should be the primary objective rather than the length of the document. Work group members have a responsibility to review the minutes for accuracy. GPWG’s proposed plan also discusses revisions to minutes. Typographical errors should be made on draft versions with no further action. Amendments to correct the content of minutes should be submitted and incorporated into the revised document as footnotes or attachments to preserve the original text. Short additions to clarify the content of the minutes should be incorporated into the text; lengthy text should be referenced with a footnote and attached to the minutes. Both amendments and additions should be made to the minutes of the actual meeting for which the document was prepared. At the next work group meeting, the chair will entertain a motion to approve the draft minutes, open the floor for discussion of any revisions and call for a vote. GPWG’s proposed process and a recommendation were distributed to ORRHES for consideration and approval.
Mr. Lewis provided additional details about the rationale for GPWG’s proposed process. Meeting minutes are an effective communications tool for new members and persons who cannot attend meetings. Discussions about the length and content of work group minutes have been ongoing for over two years. The work groups have also been challenged about the minutes. A formal process to develop and revise work group minutes is necessary to meet the needs of the public, accurately document public concerns and issues, and allow members to interact with ATSDR senior management. Concerns have been raised about the length of work group minutes, but the text can be decreased with well-prepared chairs and an organized and structured meeting.
Mr. Lewis conveyed that detailed work group minutes have been extremely beneficial to several persons. He hoped ORRHES would make a motion to approve GPWG's proposed plan. The process will allow work groups to strike a balance between minimal minutes and documents with too much detail. A formal process will also give direction to scribes in developing and revising minutes. Ms. Mosby was uncertain about the ability of GPWG’s proposed process to change the operation and practice of work groups. Based on her attendance and participation in work groups, the meetings are confrontational with limited public comment. GPWG’s proposed plan will be filed, but will not actually improve the effectiveness of meeting minutes. Ms. Mosby’s position was that minutes should capture the members’ discussion and public comments rather than comments made by each individual participant and follow-up remarks.
Ms. Kaplan conveyed that specific comments attributed to speakers have been a source of controversy since ORRHES was established. Many persons are reluctant to attend work group meetings for fear their remarks will be captured out of context. Without a formal process, no official record is prepared that accurately documents the discussions. Directing members to listen to audiotapes of meetings to accomplish this task is inappropriate. She pointed out that this problem can be confirmed by reviewing previous communications between ORRHES and members of the public. Ms. Kaplan added that she found the detailed minutes to be extremely helpful in filling gaps during her absence from meetings due to health problems. The minutes allowed her to keep up with the activities of ORRHES and the work groups.
Dr. Davidson mentioned that some work group minutes contain too much detail and are too extensive for an “abbreviated record of discussion” as described in GPWG’s proposed plan. She advised the members to reach agreement on this term. She reiterated the need to balance the minutes with an appropriate amount of detail and an accurate accounting of public concerns. Ms. Adkins remarked that in developing work group minutes, the goal should be to aim for accurately documenting as much solid information as possible. Mr. Lewis returned to Ms. Mosby’s comments about the confrontational environment of work group meetings. The minutes are not intended to attack any individual; instead, the documents reflect the discussions and thought processes of members. The minutes should be used as a tool to examine weaknesses and take corrective actions. This approach will result in more effective meetings.
Ms. Galloway acknowledged that the quality of minutes depends on the scribe. She realized the difficulty in accurately integrating heated and lengthy discussions into one overarching message, particularly when work group meetings are poorly managed. She found the work group minutes to be effective at this point. Ms. Galloway commended Dr. William Taylor and Ms. Melissa Fish of the Oak Ridge Field Office for their outstanding efforts in translating contentious meetings into manageable documents. Dr. Malmquist pointed out that scribes should not bear the burden of identifying items to include in or omit from minutes. The documents should not be sanitized and should be fairly detailed to accurately reflect the deliberations. Regardless of whether work group discussions are disagreeable and contentious, detailed minutes will allow future readers to learn about ORRHES’s true history.
Dr. Malmquist conveyed that an accounting of important activities undertaken by work groups is another reason to develop and maintain detailed minutes. Mr. Washington explained that based on his involvement with other committees, minutes reflect recommendations and other actions taken by members; the minutiae are omitted. For example, the “feelings” of members during meetings are inappropriate to be captured in a formal record. Mr. Lewis gave an example of the usefulness of detailed minutes. At a previous meeting, Mr. Washington expressed his concern about activities ATSDR conducted in the Scarboro community. Mr. Lewis extracted these comments from the minutes and presented the issues to Dr. Falk. ATSDR may take actions to address Mr. Washington’s concerns.
Dr. Malinauskas found PHAWG meetings to be collegial rather than contentious. Although discussions are adequately captured by scribes, work group members still have an opportunity to submit corrections. He noted that the quality of minutes is the responsibility of participants rather than scribes. Mr. Pereira clarified that GPWG’s proposed plan is focused on a mechanical process rather than the operation of work group meetings. He encouraged the full ORRHES to agree on the expectations and format of work group minutes because this issue will continue to be revisited if consensus is not reached. For example, work group minutes could contain bulleted lists outlining the “points of interest” and “citizen concerns.” Dr. Davidson announced that she would call for a vote to adopt GPWG’s proposed process for work group minutes later in the meeting.
COWG. Mr. Lewis, the COWG Chair, reported that the members discussed four major topics. First, the process of developing and revising work group minutes was covered in GPWG’s report. Second, Ms. Spencer will provide an update on the web site index later in the meeting. Third, the possibility of combining COWG and the Health Education Needs Assessment Work Group (HENAWG) was considered since the two work groups address overlapping issues. A combined work group will also reduce the burden on members in attending multiple meetings. Fourth, the interaction between Mr. Lewis and the ORRHES Chair stems from different views and values. Dr. Davidson’s style is not to publicly criticize ATSDR, while Mr. Lewis’s approach is to provide written or verbal comments on an inefficient or ineffective process. Overall, members should receive support from the ORRHES Chair and responses from ATSDR.
Dr. Davidson clarified her remarks to Mr. Lewis. She views ATSDR as ORRHES's partner rather than its adversary. As the ORRHES Chair, she does not openly criticize ATSDR or ORRHES during public meetings because this approach will increase rather than resolve conflicts. Her style is to express concerns to ATSDR in direct conversations. She encouraged the members to convey issues to her to relay to ATSDR. Dr. Davidson makes strong efforts to protect the authority of ORRHES during full meetings, work group meetings and interactions with ATSDR. She acknowledged that some ORRHES members are questioning her integrity.
Mr. Pereira was not aware of the full ORRHES or any work group verbally abusing ATSDR. His view was that ORRHES members and ATSDR have been mutually respectful. Regardless of personal styles, each member has a personal responsibility to ORRHES and their respective communities to question ATSDR’s activities and obtain satisfactory responses. He was pleased that ORRHES and ATSDR are conducting business in a collaborative effort. Ms. Kaplan placed two recommendations on the floor for ORRHES to consider. She pointed out that the proposals are based on the joint COWG/GPWG meeting; no members who attended the meeting opposed Ms. Kaplan’s plan to present the recommendations.
First, ATSDR’s policy on ORRHES votes should be clarified and the bylaws should be changed to eliminate the two-thirds vote requirement. The requirement allows ideas accepted by a majority of ORRHES members to be easily dismissed by ATSDR. However, situations occur in which a minority opinion still has merit and should be followed up on by ATSDR, particularly when the vote is closed and less than two-thirds. Second, ORRHES and work group minutes, responses to public comments and other documents should be made available to ORRHES and members of the public in a searchable format. Alternatively, the minutes and other materials should be placed on a CD-ROM and distributed for individual members to search documents or conduct research.
In terms of the first recommendation, Dr. Davidson clarified that the ORRHES bylaws allow minority opinions to be submitted to ATSDR. The two-thirds vote requirement is considered as a surrogate for consensus. If the bylaws were changed to require consensus, each member would need to approve or not object to a recommendation. Mr. Hanley noted that agreement was previously reached for ORRHES to have a two-thirds vote requirement. This approach allows more than 51% of members to obtain the broadest consensus possible before recommendations are forwarded to ATSDR for action. The process is not intended to exclude minority opinions.
Ms. Kaplan specified that the bylaws were developed when ORRHES was established.
At that time, the members were asked to vote on the bylaws with no knowledge
of the meeting process. She reiterated the need to reconsider the requirement
due to problems that have surfaced related to this process. Ms. Sonnenburg
indicated that the bylaws invoke the two-thirds vote requirement for “major
recommendations.” She conveyed that this term should be clearly
defined. With respect to the second recommendation, Ms. Spencer announced
that work group minutes are posted on the ORRHES web site four to six
weeks after being approved. The documents can only be searched by using
the search engine for the entire ATSDR web site.
Dr. Davidson closed the discussion on Ms. Kaplan’s recommendations with the following actions. GPWG will address ORRHES’s two-thirds vote requirement. GPWG will also review the bylaws to determine whether the section that defines the specific names of work groups should be deleted. Meeting and work group minutes as well as other ORRHES documents can be easily moved into separate subdirectories, copied on a CD-ROM and distributed to members upon request.
Agenda Work Group (AWG). Ms. Sonnenburg, the AWG Chair, encouraged ORRHES to provide feedback to her about problems with the agenda or suggestions for improvement. She will then raise these issues during AWG meetings. AWG has been operating well and has no specific issues to report.
HENAWG. Mr. Lewis, the HENAWG co-Chair, was pleased to report that the meeting was extremely positive. The members focused on the weaknesses of the ORR needs assessment and made suggestions to improve these areas. For example, information previously gathered during other ORR activities could be extracted and used to strengthen the telephone survey. This strategy would prevent ATSDR from repeating the activity. Focus groups should be convened for issues that are important to the public. To increase citizen interest and participation, consideration should be given to a town-hall meeting format that is appropriately advertised. Issues of concern can be identified by conducting an informal survey in the community. During the HENAWG meeting, Dr. Howze agreed to document suggestions made by the members and distribute the items for further discussion and refinement.
Dr. Howze provided additional details about the key outcomes of the HENAWG meeting. The need to connect with and listen to individuals and communities was emphasized. ATSDR should respond to community concerns, even if the issues are not directly related to ORR PHAs. The community assessment should be designed to serve as the basis for education, communication and other activities. ATSDR and HENAWG agreed that the community assessment must be inclusive of voices, networks, resources and other strengths within the community. Several suggestions were made to obtain information for this activity.
ORR residents will probably be more receptive to discussing concerns and issues with key community members rather than ATSDR staff. These persons could serve as community data collectors after attending a meeting with ATSDR and HENAWG to obtain more information about the community assessment, particularly the purpose and expected outcomes of the initiative. Students and other young persons could interview older family members and other community residents to obtain a history of environmental issues at the ORR site. Incentives could be given to the interviewers to undertake this effort. ATSDR and HENAWG will also conduct other activities while the community assessment is underway, such as reviewing existing information, identifying new data sources, improving work group minutes, refining the ORRHES web site and defining next steps. An action plan will be developed to clearly outline these strategies.
ATSDR and HENAWG identified several ground rules to develop and implement the community assessment. Activities should be conducted in parallel to the release of the iodine-131 and uranium PHAs. All initiatives should be designed as user-friendly tools. No activities should be proposed that cannot be accomplished. ATSDR’s abilities and limitations should be clearly defined to the community before the project is initiated. Agreement was reached to table the issue of changing the work group’s name at this time since the possibility of merging COWG and HENAWG is being considered. ATSDR and HENAWG concluded the meeting by proposing several initiatives to include in the action plan:
- Review key documents.
- Build relationships with the community to identify issues.
- Identify existing organizations or coalitions in the community to serve as partners in the assessment.
- Link with the community and follow up with suggestions to transform problems into solutions.
- Develop a framework or core set of questions that can be used to trigger dialogue about community issues or concerns and identify existing knowledge of residents.
- Design an education and communication process for the PHA results, such as compiling questions the community may ask, developing responses in appropriate laymen’s terms, and pilot testing the answers in the community.
During the HENAWG meeting, Dr. Timothy Joseph of DOE described a community project he conducted in Michigan as a contractor. Because activities by Reserve Mine were related to asbestos in drinking water, the state of Michigan requested that nine impacted communities be actively engaged in the project. The contractors placed an article in the local newspaper with telephone numbers and a mailing address for residents to provide input. Since many community members were Reserve Mine employees and the project was funded by the state, the contractors gave assurances for complete anonymity and confidentiality of respondents. The contractors also visited the communities and held one-on-one conversations to allow residents to describe concerns about Reserve Mine activities.
A list of potential concerns was presented during the community visits to assist residents as well. The contractors also solicited public input by making presentations about the state’s activities and describing the purpose of the project to community organizations within the nine neighborhoods. A well-attended public meeting was held to review and discuss community concerns. The event was extremely productive and resulted in additional concerns being voiced, particularly from persons who were previously afraid of reprisal or had no interest in becoming involved. The two-hour meeting was expanded to six hours and continued the following day. A collaborative effort was undertaken to address the community concerns and resolve problems. Several HENAWG members suggested that the model described by Dr. Joseph be replicated for the ORR community assessment.
Dr. Davidson agreed that a communication system should be developed to publicize ORRHES’s role, function, purpose, ongoing activities and accomplishments. These messages must be broadly disseminated both within and outside Oak Ridge. Ms. Brenda Vowell, the Tennessee Department of Health liaison, proposed a plan to increase ORRHES’s visibility in the community. Each county in the East Tennessee Region has a health council that holds monthly meetings; key community leaders serve as members. ORRHES could develop and present an introductory presentation at each health council meeting.
This activity would be extremely timely because all of the health councils are now focusing on mobilizing community stakeholders in a collaborative effort and refining the goals of the 1998 community assessments. Ms. Vowell added that ORRHES could also be placed on the agenda of the bimonthly Regional Health Council meeting. During these events, leaders of each health council convene to discuss health issues in the community. Dr. Howze confirmed that DHEP would be happy to collaborate with DHAC and ORRHES in developing presentations for the health councils.
Dr. Malmquist confirmed that the public is interested in ORRHES, but stronger efforts must be made to communicate and publicize activities. After he informed the Roane County Board of Health about ORRHES, the group requested future updates. The Rotary Club was also receptive to the presentation. Dr. Malmquist emphasized the need to tailor presentations to the specific needs and interests of the audience. He and ATSDR staff will meet with the editor of the Roane County News on the following day to discuss a newspaper article on the cancer incidence assessment. Ms. Galloway remarked that many persons in outlying communities have no knowledge of potential health risks from Oak Ridge. ATSDR should be mindful of this fact, particularly when communicating the PHA results.
Mr. Hill underscored the need to take specific actions to increase public input and interest in the meeting that will be held in Kingston. A notice should now be placed in the newspaper with a telephone number and mailing address for the public to provide feedback. AWG should revise the agenda for this meeting by placing important presentations first and ORRHES business last. The Kingston meeting should be conducted with a facilitator to generate effective interaction between ORRHES and the community. Ms. Sonnenburg remarked that AWG will need to review the advantages and disadvantages of this format. For example, suggestions were made at previous meetings to place the most important issues on the agenda after 4:00 p.m. because more members of the public are able to attend at this time. She asked ORRHES to provide input on the best agenda format for the Kingston meeting.
Mr. Gartseff noted that ORRHES received excellent publicity in the Oak Ridger on the previous day. Unfortunately, the front-page article describing the cancer incidence assessment cited October 22, 2003 as the date of the presentation rather than October 21, 2003. He emphasized that media articles must be checked for accuracy in future outreach efforts. Dr. Davidson raised the possibility of convening a public meeting before the ORRHES meeting is held in Kingston in December 2003. ATSDR staff clarified that ORRHES will actually convene its meeting in Kingston in February 2004. Dr. Howze announced that DHEP staff will be unable to attend the ORRHES meeting in December 2003 due to a conflicting schedule.
PHAWG. Dr. Davidson gave the report on behalf of Dr. Robert Craig, the PHAWG Chair, who was absent from the meeting. The members discussed ATSDR’s responses to eight major areas of comments EPA submitted on the uranium Y-12 PHA. The responses were distributed to ORRHES. Due to time constraints, PHAWG was unable to discuss ORRHES’s position on ATSDR’s responses in terms of whether additional modifications are needed. At this point, only two ORRHES members have submitted comments on the PHA. During the next PHAWG meeting, the members will discuss a mechanism to obtain additional feedback from more ORRHES members and submit the comments to ATSDR. However, several members were concerned about this process because ATSDR plans to present the final draft of the uranium Y-12 PHA during the next ORRHES meeting. This time-line will not allow the full ORRHES to weigh in before ATSDR finalizes the document.
Mr. Hanley resolved this issue by encouraging ORRHES members to submit comments on the uranium Y-12 PHA before the next PHAWG meeting is held on November 6, 2003. If a sufficient number of ORRHES members attend the PHAWG meeting, a resolution can be reached to address the feedback. If only a minimal number of ORRHES members attend the PHAWG meeting, ATSDR can distribute the comments to the full ORRHES by e-mail and convene a conference call to obtain resolution. Mr. Lewis noted that uncertainties with this approach emphasize the need to develop a process for ORRHES to collectively address PHA comments and concerns. Ms. Sonnenburg requested that at a future meeting, EPA inform ORRHES of its position on whether ATSDR did or did not adequately respond to the comments.
Ms. Spencer announced that Mr. Jon Richards, the EPA liaison, was unable to attend the current ORRHES meeting. Since he also has a conflict for the December 2003 ORRHES meeting, she asked Mr. Richards to identify an EPA representative who can attend. Both Ms. Spencer and Mr. Hanley have requested that EPA provide feedback in an e-mail or letter about its position on ATSDR’s responses to the comments. Ms. Kaplan called ORRHES’s attention to recommendations she distributed about the uranium Y-12 PHA. She is asking that ORRHES officially request placing EPA Headquarters and Region IV on a future agenda. During this presentation, EPA should discuss ATSDR’s responses to its comments and whether EPA believes ATSDR adequately addressed the concerns.
Ms. Kaplan’s position was that EPA may be more willing to make the presentation with an official ORRHES recommendation. Dr. Malinauskas clarified that ORRHES’s role does not extend to evaluating policy issues between EPA Headquarters and Region IV. ATSDR and EPA should settle outstanding concerns about ATSDR’s responses to EPA comments without ORRHES’s involvement. Dr. Davidson charged PHAWG with discussing and addressing Ms. Kaplan’s recommendations during its next meeting
Dr. Malmquist provided a brief background of this activity before the floor was opened for the presentation. The concept of the CIA was developed in response to community concerns and negative media coverage about cancer at the ORR site. PHAWG formed an ad hoc group to more closely focus on this issue. The goal of the initiative is to minimize community concerns about cancer incidence in the ORR area. However, the CIA will not be designed to provide information about a causal relationship between cancer and ORR sources. Dr. Malmquist commended Ms. Dhelia Williamson, of the ATSDR Division of Health Studies, for her outstanding effort in expanding the initiative from a vague concept to a concrete activity.
Ms. Williamson described actions that will be taken to implement the CIA after the data are reviewed. The purposes of the activity are to evaluate cancer rates in the Oak Ridge area and determine whether cancer rates are higher in 49 Oak Ridge census tracts and eight target counties: Anderson, Blount, Knox, Loudon, Meigs, Morgan, Rhea and Road. Since state law requires every diagnosed cancer case to be reported to the Tennessee Cancer Registry (TCR), the CIA data will also include newly-diagnosed cases.
Information reported to TCR is limited, but demographics and medical data for each individual cancer patient include name, address and age at time of diagnosis, race, sex, census tract code, primary cancer site and histology type. Physicians and hospitals are both responsible for reporting cancer cases, but TCR also reviews medical records at hospitals to ensure all cases are being captured. The state of Tennessee instituted mandatory cancer reporting in the 1980s, but TCR cancer incidence data reports are only complete for 1990-1996 at this time. ATSDR will be able to incorporate data from 1996-2000 in the CIA after these records are complete.
In this activity, ATSDR will examine all cancers except those labeled as “other.” These types of cancer include bladder, bone, central, nervous system, cervix, colon, corpus uteri, esophagus, female breast, Hodgkin's disease, kidney, leukemia, liver, lung, melanoma, myeloma, non-Hodgkin's, lymphoma, oral cavity, ovary, pancreatic, prostate, rectum, stomach and testis. The “other” category also includes situations in which the primary cancer site cannot be identified. ATSDR’s process to identify, review and interpret data for the CIA is consistent with the TCR methodology. The statistical method will be based on standardized incidence ratios (SIRs) that compare the observed and expected number of cases.
The expected number is based on the occurrence of cases observed in the state of Tennessee. SIRs will be controlled for differences in age, race and gender since these characteristics can influence health outcome. For example, older persons are more likely to have cancer than younger individuals and black males have a higher probability of developing prostate cancer than white males. Cancer rates for females and males will be evaluated separately as well. SIRs will be obtained by dividing observed cases by the number of expected cases. If a SIR equals 1.0, observed and expected cases are equal. If a SIR is greater than 1.0, observed cases are more than expected cases. If a SIR is less than 1.0, observed cases are less than expected cases.
A strong focus will be placed on several issues during the CIA to obtain information in addition to statistical significance: whether the SIR is greater than 1.5 or less than 0.5; the number of observed cases; whether 1 is in the confidence interval; and the precision of the confidence interval. The confidence interval would not be statistically significant if 1 is present, but the figure could be clinically relevant. A confidence interval is the amount of certainty for an estimate. For example, with a 95% confidence interval and an estimate of 1.5, ATSDR would be 95% certain that its estimate falls within the range of 1.5.
ATSDR will provide several examples to clearly explain to the community the process of calculating CIA data. In the first scenario, the observed number of female breast cancer cases is 397 and the expected number is 254. The SIR would be equal to 1.56 based on dividing the 397 observed cases by the 254 expected cases. The SIR indicates that 1.5 times as many cases would be expected with a 95% confidence interval of 1.2 to 2.3. In this example, the number of female breast cancer cases in the area would be elevated compared to the state of Tennessee.
In the second scenario, the observed number of male lung cancer cases is 573 and the expected number is 550. The SIR would be equal to 1.0 based on dividing the 573 observed cases by the 550 expected cases. The SIR indicates the number of observed and expected cases is equal with a precise 95% confidence interval of 0.8 to 1.2. This estimate is not statistically significant since 1 is included in the confidence interval. In this example, the number of male lung cancer cases would not be elevated in the area compared to the state of Tennessee.
In the third scenario, the observed number of cervical cancer cases is 5 and the expected number is 1. The SIR would be equal to 5.0 based on dividing the 5 observed cases by the 1 expected case. The SIR indicates 5 times as many cases as would be expected. In this example, an estimate of cervical cancer would be unstable due to small numbers and an imprecise 95% confidence interval of 0.3 to 7.4. ATSDR expects to see unstable rates in the CIA due to small observed numbers from rare cancers.
The conclusions of the CIA will be based on elevated or reduced rates with stable estimates. Information about known risk factors will be obtained from the American Cancer Society and National Cancer Institute and provided for elevated cancers. Resources to obtain additional information about specific types of cancer will be listed in the CIA report as well. Strengths of a CIA include examining specific information on the health status of a community for the time period the data were collected. The TCR is an existing data source that will be used to conduct the CIA. The CIA is also useful because geographic areas to be examined and disease outcomes to analyze can be specified. Methods to conduct the CIA have been established as well.
Limitations of a CIA include the inability to ever establish a cause/effect relationship and the lack of information regarding other risk factors that could be associated with the disease. The latency of cancer is 10-30 years and a small number of cases results in unstable estimates. Information regarding length of residence or occupational exposure cannot be applied in the analysis. The CIA will serve as a descriptive epidemiologic analysis of a population rather than individuals. ATSDR hopes to present a draft CIA report to PHAWG in December 2003.
Ms. Sonnenburg was concerned that the “other” cancer category will exclude many ORR residents. She pointed out that cases in this group may be significant. Ms. Williamson clarified that ATSDR will be able to identify the number of other cancer cases, but an analysis of these data would be uncertain. However, the number of other cancer cases can be presented to ORRHES for review and discussion and also compared to the entire state of Tennessee. Mr. Lewis did not understand the rationale for TCR’s incomplete data from 1996-2000. He advised ATSDR to clearly explain the reasons for omitting these data. An explicit statement about this issue may assist in minimizing public skepticism about the CIA.
Ms. Williamson remarked that cancer registry data must meet certain CDC criteria before being labeled as “complete.” TCR’s 1996-2000 data have not yet met these standards, but the records are expected to be completed in the near future. Ms. Williamson committed to obtaining more concrete answers about the incomplete data from Dr. Toni Bounds, the TCR Director, and including this information in the introduction of the CIA report. Ms. Kaplan realized that ATSDR does not plan to address other cancers in the CIA, but she saw a benefit to analyzing these cancers by age, race and gender. Ms. Williamson agreed that this issue should be discussed in more detail with Dr. Bounds.
Ms. Adkins pointed out that “address at time of cancer diagnosis” is much less important than the location where an ORR resident was raised. Many community members have died of cancer or moved away from the area. She raised the possibility of conducting a focused search of previous ORR residents by tracking elementary school students in the 1950s and 1960s. Ms. Sonnenburg questioned whether ATSDR could modify the CIA methodology to include ORR residents who died of cancer during the time period of 1990-1996. Ms. Williamson agreed that this area is a major limitation of the CIA. The activity is only designed to obtain information about cancer rates in a specific target area for a particular time period.
Vital statistics records would need to be reviewed to address cancer mortality earlier than 1990; ATSDR will need to analyze data from the PHAs as well. These findings will provide more information on past exposures, previously impacted residents and appropriate public health actions. Ms. Williamson noted that this activity is more difficult and cannot be conducted in the CIA, but the PHAWG ad hoc group has raised the possibility of analyzing historical cancer deaths in the ORR area in the future. Dr. Malmquist added that individual health records would need to be obtained to review historical cancer deaths. However, this information cannot be accessed due to privacy and confidentiality issues. Moreover, cancer mortality data would be inappropriate for the CIA since death certificates do not identify the specific type, cause or length of cancer of the deceased individual.
Dr. Davidson pointed out that mortality data are also flawed because only the obvious cause of death is listed. For example, a heart attack would be listed as the cause of death for an individual diagnosed with cancer who died of a heart attack. Mr. Hill was in favor of comparing the CIA outcomes to the United States. For example, if cancer incidence is found to be higher in the Oak Ridge area than the rest of the country, the community would find this information to be extremely beneficial. Ms. Williamson was uncertain that national data can be obtained. Although states report cancer morbidity and mortality to CDC, these data may not be representative of the entire country. Additionally, data are compared by similar geographic areas, such as county-to-county or state-to-state.
To address Mr. Hill’s concern, however, Ms. Williamson will discuss with CDC and cancer experts the possibility of comparing unexpected or abnormal cancer elevations in Oak Ridge to the rest of the country in the CIA report. Dr. Malinauskas urged ATSDR to be extremely cautious in presenting and communicating the CIA data. Most notably, the media may ignore qualifying factors and report sensational headlines only, such as “Oak Ridge has five times as many cervical cancer cases than Tennessee.”
Ms. Williamson confirmed that unexpected cancer rate elevations, caveats and other disclaimers will be clearly explained in the CIA report before the document is disseminated to the public. ATSDR’s current efforts to develop a rapport with the local media may also minimize inaccurate articles. With this relationship, journalists will be more willing to report all aspects of the CIA instead of focusing on sensational headlines. Ms. Sonnenburg recalled that TCR recently received a grade of “D” for data quality. She questioned whether the rating will impact the CIA outcomes. Ms. Williamson previously informed ORRHES that the grade was unfair because TCR was compared to other state cancer registries with operational histories of 30 or more years. TCR was established less than 20 years ago. TCR is confident about the completeness and accuracy of the 1990-1996 data and inclusion of this information in the CIA.
Mr. Hanley clarified that the rating was not based on data quality; TCR received a “D” because the data were not readily available. Mr. Lewis questioned whether previous Tennessean articles on cancer in the Oak Ridge area should be reviewed for scientific accuracy and impact on the community. Ms. Williamson noted that unlike media articles, the CIA report will contain hard data for individuals to calculate cancer incidence in Oak Ridge. ATSDR’s conclusions based on the data and the specific cancers, time period and target areas will be clearly defined as well. The CIA report will also be released for public comment to allow ATSDR to clarify any misunderstanding or inaccurate interpretation of the document.
Dr. Cember followed up on Mr. Lewis’s comment because even hard data can be skewed to influence public perception. For example, ATSDR could reach entirely different conclusions if the time period of the CIA was changed to different years or the target area was changed to different geographical locations. He encouraged ATSDR to explicitly state that its findings are solely based on the factors selected for the CIA. Ms. Adkins mentioned that the previous Tennessean articles described historical cancer deaths. The CIA report cannot be compared to this information because the TCR data will be limited to 1990-1996.
Other ORRHES members pointed out that the media articles contained anecdotal or self-reported data, cannot be verified with hard data, and do not have sufficient information for a formal critique. Ms. Adkins was upset that ORRHES’s discussion and the CIA design are biased. She said some members were laughing at the fact that residents were harmed in the past from Oak Ridge exposures; this practice has been ongoing during her entire tenure as an ORRHES member. Moreover, ATSDR’s target population for the CIA will not be significantly impacted. Mr. Hanley described the historical context for the 1998 Tennessean articles. Tennessee Senator Frist asked the former HHS Secretary to analyze the incidence of cancer in Oak Ridge. He also inquired about the quality and usability of existing data.
Mr. Hanley offered to distribute to ORRHES HHS’s multi-agency response to Senator Frist about the abilities and limitations of the existing data. Ms. Kaplan explained that exposures may be in the past, while incidence and illness may be in the present. She advised ATSDR to refrain from discounting media articles because newspapers can serve as a source of valuable information. For example, the Tennessee Department of Health and Environment previously stated that the “Oak Ridge community’s interest has historically been economic over public health.” Dr. Malmquist added that a European company previously expressed a great deal of interest in building a plant in the Oak Ridge area. After reading the Tennessean articles, company employees had no desire to live in Oak Ridge and the plant was built in Nashville.
Dr. Taylor returned to Mr. Gartseff’s earlier comment about the inaccurate date for the CIA presentation printed in the Oak Ridger. The incorrect dates were the fault of the reporter. However, a well-done follow-up article was printed in the October 21, 2003 edition based on a draft briefing paper of the CIA. In the event some members of the public did not read the new article, Oak Ridge Field Office staff will leave a forwarding telephone number or be available at the DOE Information Center on the following day to respond to the community’s questions about the CIA.
The Chair called for public comments; no attendees responded.
Ms. Spencer provided details about this activity before the floor was opened for the presentation. The community health concerns form is available on the ORRHES web site and will also be displayed at each meeting. Sources for concerns include meetings and completed forms. For concerns that include contact information, ATSDR responds by letter, e-mail or telephone. The responses generally include a resource that can assist individuals in addressing their concerns. ATSDR will categorize and address other concerns as well.
Mr. Hanley reported that ATSDR developed the community health concerns component of the web-based Federal Facilities Information Management System in direct response to ORRHES's recommendation. The CHCD allows staff to systematically record, organize and track community health concerns and document ATSDR’s responses. A formal process is needed at Oak Ridge for this effort due to the site’s 50-year history, three facilities, and large number of ATSDR staff and community members involved with activities. The sources of community concerns captured in the CHCD include three public health work group meetings in 1999; letters and e-mail messages; 10 community health concern forms; and minutes from 15 ORRHES meetings, 27 PHAWG meetings, 13 HENAWG meetings and 18 COWG meetings. The CHCD currently contains 2,500 concerns and can be searched in a variety of methods.
For some work group meetings that were held when ORRHES was initially established, no minutes were prepared or the documents were too brief to be useful for the CHCD. The quality of ORRHES and work group minutes directly impacts the quality of data to be input in the CHCD. The community health concern forms are useful for ATSDR to obtain detailed information about concerns and provide more specific responses. General health currently comprises 46% of the CHCD. The 30 different subcategories include concerns about PHAs, exposure assessments, exposures, clinical issues, health care issues and compensation for exposures. Subcategories with less than 4% of concerns are grouped as one of 22 “other” subcategories.
Some specific concerns in the general health category focus on screening values, pathways, contaminants and causation. Many subcategories under general health will be addressed as PHAs are completed, but several concerns in the exposure subcategory have already been resolved unless and until an exposure is detected while PHAs are being conducted. Procedural health concerns are another major category of the CHCD. This category includes 51 subcategories, such as concerns about the community needs assessment, ATSDR program establishment, and operation of ORRHES and work groups. Of the 51 subcategories, 47 have less than 4% of concerns.
Many concerns related to the community needs assessment have been resolved since DHEP will not use data collected by George Washington University. The majority of outstanding concerns should be resolved by the plan of action DHEP and HENAWG will develop in the future. Several concerns regarding ATSDR’s program establishment were addressed when ORRHES was formed and the program plan was created, but ATSDR realizes that several issues in this subcategory still need to be improved. Thyroid disease and cancer death are the largest areas of concern within the cancer health effects category; thyroid disease is also the most significant issue in the non-cancer health effects category.
In the CHCD, other cancers are grouped into a health outcome and epidemiology subcategory under general health. Many cancer concerns will be addressed by the CIA, but ATSDR acknowledges that concerns about historical cancer deaths will remain an outstanding issue. ATSDR has used the CHCD to prepare for presentations, evaluate clinical issues, document evaluations of concerns, write the WOC and Y-12 uranium PHAs, assess public health implications, and address community concerns. The CHCD is a pilot project at this time, but ATSDR realizes that the data will have more uses in the future, such as DHEP’s health education and promotion activities.
Dr. Cember asked Mr. Hanley how birth defects are categorized. Dr. Cember stated that in his experience, when people asked him questions about radiation, the number one question had to do with birth defects. He then inquired about the rationale for CHCD’s stronger emphasis on thyroid disease rather than birth defects, particularly since thyroid disease is manageable. Mr. Hanley replied that the CHCD contains a birth defects category, but meeting minutes are the source for the majority of concerns. Because ATSDR has given many more presentations on thyroid disease than birth defects at meetings, this health effect obviously would be more of a concern to the community than birth defects. Thyroid disease is also more important to the public due to the presence of iodine at the ORR site. However, Mr. Hanley indicated that birth defects and other health issues may become more significant to the community with future outreach efforts by ATSDR and ORRHES.
Mr. Lewis strongly encouraged ATSDR to develop a process to identify and incorporate information from these sources into the CHCD. An effective communications strategy to clearly demonstrate to the public that issues were addressed should be designed as well. His position was that the quality of the CHCD is solid, but ATSDR’s limited interaction with the community is the reason for the lack of public participation at ORRHES meetings. Mr. Lewis said that it is important to know the historical data before the ORRHES was created. The absence of concerns in the database about birth defects is a hole that was created by the breakdown in the needs assessment. Birth defects was one of the focus groups that was eliminated from the needs assessment. The concerns database is reflecting that we are hearing from the same people over and over. People are not going to come out to all of our meetings. In the community, you get a whole different set of concerns. You have to go back and extract data from town meetings and the newspapers. People pour their hearts out in the newspapers. ATSDR should stop running form them: Get the concerns that are out there, write them down, and deal with them. If you can’t do that, you can go back to Atlanta. If you’re not going to deal with the public, take the public out of public health assessment. The people are not showing up because you are not dealing with the public.
Ms. Galloway asked about ATSDR’s process to communicate to the public that concerns were addressed. Mr. Hanley conveyed that DHEP and the Community Involvement Branch will assist in developing and delivering appropriate messages for the community, but no formal outreach strategy has been designed to date. He noted that newspaper announcements would be the most effective mechanism to reach the broader public, but ATSDR can also make presentations to community groups on topics of interest to communicate findings. Dr. Malinauskas did not share Mr. Lewis’s view of flaws in the CHCD; instead, he only saw a difference in methodologies. ATSDR is developing the CHCD with a cause/effects approach, while Mr. Lewis supports an effects/cause format.
Ms. Galloway made a motion for ORRHES to adopt the process for developing and revising work group meeting minutes as outlined in the GPWG report; Mr. Hill seconded the motion. Dr. Davidson clarified that the recommendation will not need to be forwarded to ATSDR because the item is limited to ORRHES’s operation. Mr. Lewis was in favor of submitting the recommendation to ATSDR to ensure ORRHES receives support and resources for the new process. Dr. Davidson pointed out that ORRHES would need to approve a separate recommendation for ATSDR to allocate resources to support the process to develop work group minutes.
Mr. Pereira confirmed that ATSDR will support and endorse any functional process to improve ORRHES’s operations. He asked ORRHES to consider merging COWG and HENAWG for the following reasons. First, the approach will facilitate cohesive and creative ideas rather than fragmented thoughts because the work groups share some of the same members and address overlapping issues. Second, the combined work group will be a logical strategy in minimizing the burden of members to attend meetings for two different groups.
Third, ATSDR’s budget will be less constrained by developing minutes and paying overhead expenses for one work group instead of two. Fourth, DHEP plans to conduct communications and community assessment activities in parallel with the work group. Mr. Pereira returned to Mr. Lewis’s earlier comment that the lack of public participation at ORRHES meetings stems from ATSDR’s limited interaction with the community. ORRHES meetings primarily focus on process rather than the impact of a certain product on individual community residents.
Public availability sessions, easy-to-read fact sheets and similar tools would be more effective than ORRHES meetings in increasing community interest. The lack of concrete products that clearly demonstrate the relevance to the public is the reason for limited public participation at ORRHES meetings. Mr. Pereira mentioned that ATSDR will make improvements in this area with the upcoming release of the PHAs and implementation of the community assessment. There being no abstentions, opposition or further discussion, the process to develop and revise ORRHES work group meeting minutes was formally adopted by a majority vote.
Ms. Spencer described several outstanding issues. First, the terms of the current ORRHES members are scheduled to expire on December 31, 2004. ATSDR must submit nomination packages to the CDC Committee Management Office (CMO) to be forwarded to HHS. ATSDR and CMO are both required to submit packages at least five months prior to the expiration of terms. For current ORRHES members who are interested in continuing to serve, ATSDR will provide strong justification to CMO to obtain renewal of membership for another year. Members who do not wish to renew their terms should provide ATSDR with the names of potential candidates who can make solid contributions to ORRHES.
In both of these cases, however, the final selection of continued or new ORRHES members is beyond ATSDR’s authority and control. A September 23, 2003 memorandum on the management of federal advisory committees and an attachment outlining corrective measures to address these concerns were distributed to ORRHES. These actions are being taken to dissolve unproductive or inactive committees and ensure new voices and perspectives are reflected on committees. In December 2003, ORRHES members will be given a list of items ATSDR will need to request the 180-day extensions. These items must be submitted to ATSDR by the February 2004 ORRHES meeting.
Second, ATSDR received funding to make the ORRHES web site more user-friendly. ATSDR will present recommendations by the web site contractor to COWG or the new work group if COWG and HENAWG are merged. ATSDR will then relay the work group’s input for the web site contractor to take action. Third, approved work group meeting minutes are posted on the web site within a four- to six-week period after the meeting. This time-line includes development of the draft minutes, revisions by ATSDR and the work groups, and final approval by CMO.
ORRHES meeting minutes are usually posted on the web site within a six-week period after approval. ATSDR receives the first draft two weeks after the meeting and circulates the document to members by e-mail and regular mail. ORRHES is usually given two weeks to ten days to submit written comments. The revised draft is then distributed in pre-meeting packets to the members. Only written comments can be incorporated into minutes. This process takes approximately six to seven weeks; ORRHES meetings are held every six to eight weeks. Minutes are submitted for posting to the web site after approval by ORRHES. This process may take an additional six weeks based on the workload and priority projects of information services. In response to Mr. Hill’s question, Ms. Spencer explained that holding a public availability session during the December 2003 ORRHES meeting will depend on whether the draft WOC PHA is complete. According to the project plan, the ORRHES meeting in Kingston is scheduled for February 2004.
The next ORRHES meeting is scheduled for December 2, 2003. Because DHEP will be unable to attend, consideration was given to changing the date to December 9 or 16, 2003. Due to conflicting schedules of other ATSDR staff on these dates and the upcoming holiday season, agreement was reached to maintain the December 2, 2003 date. Potential dates for the 2004 meetings will be proposed during the February 2004 meeting.
There being no further business or discussion, Dr. Davidson adjourned the ORRHES meeting at 7:21 p.m.
I hereby certify that to the best of my knowledge, the foregoing Minutes of the proceedings are accurate and complete.
Kowetha A. Davidson, Ph.D., D.A.B.T.
ATSDR — Agency for Toxic Substances and Disease Registry
AWG — Agenda Work Group
BLLs — Blood Lead Levels
CAG — Community Assistance Group
CDC — Centers for Disease Control and Prevention
CHCD — Community Health Concerns Database
CIA — Cancer Incidence Assessment
CMO — Committee Management Office
COWG — Communications and Outreach Work Group
CURT — Community United Response Team
DFO — Designated Federal Official
DHAC — Division of Health Assessment and Consultation
DHEP — Division of Health Education and Promotion
DOE — U.S. Department of Energy
EPA — U.S. Environmental Protection Agency
GPWG — Guidelines and Procedures Work Group
HENAWG — Health Education Needs Assessment Work Group
HHS — Department of Health and Human Services
ORDRP — Oak Ridge Dose Reconstruction Project
ORRHES — Oak Ridge Reservation Health Effects Subcommittee
PHA — Public Health Assessment
PHAWG — Public Health Assessment Work Group
RaLa — Radioactive Lanthanum
SIRs — Standardized Incidence Ratios
TCR — Tennessee Cancer Registry
TDEC — Tennessee Department of Environment and Conservation
TDOH — Tennessee Department of Health
VBI-70 — Vasquez Boulevard/Interstate 70
WOC — White Oak Creek