ORRHES Meeting Minutes
March 19, 2001

March 20, 2001

Health Effects Subcommittee Evaluation Report

When the member reconvened at 8:30 a.m. the following morning, Ms. Margaret Gwaltney and Dr. Thérèse Van Houton reported on their firm's (COSMOS) evaluation of the Health Effects Subcommittees' process.

Three of the Health Effects Subcommittees were formed in 1995: in January at Hanford (HHES), in September at Savannah River (SRSHES) and in December at the Idaho National Engineering and Environmental Laboratory (INEELHES). The Fernald Subcommittee (FHES) was formed in June 1996, and Oak Ridge's in November 2000. The HHES and ORRHES are administered by ATSDR; the rest by NCEH (except for ~6 months in which NIOSH administered the FHES before withdrawing from active participation with that process). The overall charter allows for six Subcommittees. The FHES may be discontinued, although that has not been finally decided

At a national meeting in December 1998 of all the Health Effects Subcommittees, an evaluation was first discussed. All the Subcommittees selected two representatives, as did NCEH, NIOSH, and ATSDR, to an Evaluation Work Group. They developed a stakeholder map to show the relationships of each to the other.

The rationale for the evaluation was to: 1) identify underlying assumptions and expectations within and between groups, and differences with and between the advisory committees as well as the agencies; 2) identify features of the advisory system that affect (facilitate/hinder) the process for reaching and using consensus advice; and 3) develop recommendations that address facts as well as perceptions.

The methods of the evaluation were designed and conducted collaboratively with the Evaluation Work Group. The evaluation was done in design and implementation phases. The Work Group identified five evaluation questions and four crosscutting issues. They met by conference calls every two weeks and in person four times through the process. COSMOS joined the work in October 1999, the Work Group began in January 1999, and the final report was submitted to CDC in January 2001. COSMOS met with each Subcommittee and spoke with as many members as possible (>70). From an initial list of ~100 questions which was categorized, the Work Group developed a final list of five:

1. Are the Subcommittees effective in providing relevant and timely advice?

2. How effective are CDC and ATSDR in using the advice?

3. What is the effect of the advisory process on the credibility of public health activities and research, and the public's trust in the federal government?

4. Is the advisory system helping to deliver appropriate prevention services?

5. Is the FACA-chartered Subcommittee process the best mechanism for obtaining public involvement?

The four cross-cutting issues were: 1) adequacy of resources, 2) role of the Subcommittees in conducting community outreach; 3) composition of the Subcommittees and rotation of members; and 4) continuation of the Subcommittees.

The surveys were completed by 44 Subcommittee members and 14 agency staff. Semi-structured interviews were conducted with 33 agency staff, 26 community members from the Subcommittee sites, DOE staff, and the four Chairs. The Subcommittee minutes and other documents were also reviewed. All the surveys and interviews were reported anonymously. One question was whether they believed they were exposed to radiation or chemicals, with no specificity about whether that was onsite to a worker and/or offsite to a population. This question was intended to assess their perspective, since many members felt strongly that they had been affected by the site, and others did not. The majority of the Fernald (60%) and Savannah River (80%) members believed they or their family were exposed to radiation or chemicals, versus a minority of Hanford (47%) and Idaho (33%) members. A chart was shared outlining the characteristics of the Subcommittee members.

Findings: Cross-Cutting Issues

1. Adequacy of resources: 1) The Subcommittee members believe that more resources are needed for work group activities and community outreach; 2) Subcommittee members are concerned that resources are not available to implement consensus advice; 3) Subcommittee members do not understand the role of DOE in funding recommended research and public health activities; and 4) the agencies report that responding to requests for information and presentations is resource-intensive.

2. Subcommittee role in conducting outreach: 1) The Subcommittee members value outreach activities as a way to increase broad participation in the advisory process, identify community concerns, and communicate results of the agencies' work. However, 2) it is not clear whether outreach is an appropriate Subcommittee function; it is not identified in the charter.

3. Membership composition and rotation: 1) Some Subcommittees members and agency staff are concerned about over-representation of activists (defined as "people with an absolute, immovable agenda") and under-representation of average citizens; 2) many Health Effects Subcommittees members and some agency staff oppose rotation because it results in loss of institutional memory and it is difficult to recruit members; 3) the agencies differ in extent to which they have enforced rotation requirements: while ATSDR enforced them, NCEH was more relaxed.

4. Criteria for continuing or discontinuing Subcommittees: 1) In general, agency staff focus on whether the agencies had completed their work at the site; while 2) the Subcommittee members focused on whether all community concerns had been addressed.

5. Interpreting the purpose/scope of the advisory process: Two interpretations emerged: a narrow one, that advice should be limited to current or proposed agency research or public health activities; or a broad one (also in the FACA charter), that in addition, Subcommittees should focus on community concerns, recommend new studies and initiatives, and conduct community outreach and education.

Recommendations on Cross-Cutting Issues

• Agency staff and Subcommittee members should jointly read the FACA charter and reach agreement on the appropriate purpose and functions of the Subcommittees.

• The Subcommittees members, Chairs, and DFOs should receive periodic training on the FACA charter.

• Agencies should be consistent in implementing the provisions of the FACA charter (e.g., member rotation). They should also meet periodically with the Chairs and DFOs to ensure that site-specific procedures adhere to the charter.

COSMOS' criteria for recommendations were that they should: 1) address at least one of the issues concerns covered by the evaluation; 2) be based on data collected and observations made; 3) be feasible - stakeholders must be able to implement the recommendation with the available resources; and 4) there must be a plausible connection between implementation of the recommendation and an improvement in the advisory process.

COSMOS Evaluation Findings

Question 1. Are the Subcommittees effective in providing relevant and timely advice?

Findings: In general, yes. Not all consensus advice relates to public health activities or research; some relates to administrative matters. (It was interesting that some Subcommittees provided more consensus advice on administrative issues than otherwise.) The Subcommittees define consensus advice differently and use different procedures for reaching consensus advice (e.g., show of hands or not by formal votes). Not all advice is based on consensus (it could be individual or from work groups, but if recognized as valuable by the agencies it would be followed even without a full Subcommittee recommendation). Most advice is not a response to an agency's explicit request for consensus advice; the advice is offered in the course of presentations or discussion. Only one Subcommittee (HHES) keeps a formal log or inventory of consensus advice.

Recommendations

1. The Agencies should develop activity-specific plans that identify the issues on which they need consensus advice.

2. Subcommittees should establish procedures to help them determine when and on what issues they need to provide consensus advice.

3. Agencies and Subcommittees should collaborate on setting goals and time lines and develop procedures that promote accountability. Most of the Subcommittees' focus was on a fast start and moving ahead, without a strategic plan of what is desired to be accomplished over time. Keeping a log to track advice over time would help.

Question 2: How effective are CDC and ATSDR in using the advice?

The factors influencing agency decision-making related to consensus recommendations include the availability of resources; the agency mission; scientific soundness; and Congressional mandates (e.g., the medical monitoring program on which the HHES and ATSDR worked for years cannot be funded).

Findings: The agencies appear to respond to both consensus advice and informal advice. The majority of the advice acted on is advice related to the agencies' current work. Subcommittee members say that sometimes they do not receive sufficient information on why some advice is not implemented. Subcommittee members who disagree with agency findings have been confrontational and disrespectful of the agency representatives.

Recommendations

1. The agency's explanation of why a consensus recommendation is not implemented should be as complete and detailed as possible.

• The agencies need to determine whether they intentionally accord priority to consensus advice related to current work, and if so, they should communicate any such priorities to the Subcommittees.

• Subcommittees and agencies should have a zero tolerance policy for personal attacks.

Question 3. What is the effect of the advisory process on the credibility of public health activities and research, and the public's trust in the federal government?

Findings. Most Subcommittee members believe that research credibility has increased. For about a third, trust in the government had increased, but for about a fifth it had decreased. (For the balance, the trust level had not changed; they never trusted the government. No one responded that they had always trusted the agencies and still did, or that it had increased). Subcommittee members report that some members find it difficult to accept findings that do not support their beliefs regarding health effects.

Recommendation. The agencies and Subcommittees should jointly explore the reasons for the Subcommittees' current lack of trust in the federal agencies, and propose ways that trust can be enhanced.

Dr. Van Houton and Ms. Gwaltney agreed that this process will not work as well in the absence of trust. From the limited scope of this survey, this stood out to them as a finding, and the Work Group agreed that this was a large issue. Mr. Lewis asked for a definition of "trust," but Dr. Van Houton responded that this is self-defined. It was the hoped-for outcome of the DHHS research process from the beginning, when DHHS was assigned this work because DOE's credibility was not trusted. The question for COSMOS was only to assess the change.

Question 4. Is the advisory system helping to deliver appropriate prevention services?

Findings. There were differences of opinion of whether "outreach" is a legitimate function of the Subcommittee. Many on the Subcommittees believe that outreach is needed to improve prevention services. But confusion exists among agency staff about the appropriateness of Subcommittee outreach activities.

Recommendation

NCEH and ATSDR should assess the value of the Subcommittees' outreach activities and, if indicated, 1) identify outreach as an expected activity in the next FACA charter and 2) allocate resources to support the Subcommittees' outreach activities.

Ms. Kaplan expressed her belief that outreach is a prime function of this Subcommittee and reported heated related discussions in the Communication/Outreach Work Group about this already. Admittedly, having the public involved with all their emotions can slow an agenda, but she felt that this is a legitimate issue that needs to be addressed.

Question 5: Is the FACA-chartered Subcommittee process the best mechanism for obtaining public involvement?

Findings. Most agency staff and Subcommittee members agree on the importance of public involvement, and more Subcommittee members than agency staff believe that FACA is the most appropriate mechanism for obtaining it. (Some agency staff were frankly worn out by this process and were unsure that FACA was the most appropriate method to get public involvement, noting that there are other ways to do so, such as community meetings, work groups, etc. But in 1995, there was strong feeling to have the FACA process, and that there was value in having the agency consistently meet with the communities). Agency staff and Subcommittee members have different criteria for discontinuing a Subcommittee.

Recommendation. The agencies and Subcommittees should acknowledge from the beginning that the Subcommittees will eventually end, and plan early on for their discontinuance and for sustaining public involvement afterward.

Final Finding: This evaluation is a first step. The evaluation's findings suggest ways to improve effectiveness and accountability.

Final Recommendation: CDC and ATSDR, in collaboration with the Subcommittees, should continue to evaluate and assess the effectiveness of the Health Effects Subcommittee advisory process.

Subcommittee discussion with the COSMOS representatives included the following:

• Dr. Davidson thanked the COSMOS representatives for a truly enlightening presentation.

• All parties should read the FACA charter together to reach agreement on the narrow or broad interpretation of the committee's function. If they begin with different interpretations, it is likely they will proceed in different directions.

• Mr. Lewis agreed that without time lines and implementing procedures, the Subcommittee cannot gauge progress and success. A method should be agreed upon from the start.

• What are the 3-4 most important things this Subcommittee should resolve at this time to avoid future trouble? (Brooks) Discuss why the members are involved and what they want out of this process, find the common goals; then agree what the Subcommittee wants to accomplish and track it along a time line to assess progress (advice given, agencies' response). If the advice is not implemented, ask why, to avoid a vague feeling of dissatisfaction that the advice is not being taken.

• We need a thorough discussion of our mission statement during the agenda so we know how to proceed. (Sonnenburg) Ms. Sonnenburg noted that ATSDR's mission includes health education, which immediately seemed to be the thrust of their work at Oak Ridge (e.g., the GWU contract).

• Agreed; perspectives are different. Some have an agenda, such as what is right for this community, and ATSDR's scope does not meet that, other agencies, foundations, etc. need to be found to do so. Putting that in a bureaucratic jangle of rules and regulations is a formula for conflict. (Kaplan) Such conflicts will compromise the individual member's and the Subcommittee's effectiveness. Discussion of this was encouraged.

• Please elaborate about the FHES' situation. (Akin) NCEH finished their work and turned the Subcommittee's lead over to NIOSH, which was still working on site. Shortly thereafter, NIOSH decided that their mission to serve the workers was better pursued than through a public FACA vehicle and they returned it to NCEH. But the Subcommittee feels that there are still unanswered concerns, and they are working on another structure to take the FHES' place.

• Has any group developed a program with logic and process, decision models, etc., to develop and give consensus advice? (Lewis) Each committee developed operational guidelines, but encountered some problems when the agency's committee management found conflicts with their charter. They exist, but are not well used. There was no training or tool kit provided, except for the joint 1998 meeting.  But bringing all the members to one place was very costly, limiting how often that can be done. (Dr. Davidson noted that the ORRHES' procedures and guidelines became its by-laws, so there should be no conflict with committee management.)

• Why would the Subcommittees frustrate themselves by recommending on things the agency cannot do? Someone isn't doing their job. (Frome) Some refusals were unanticipated; for example, the Hanford Medical Monitoring Program's funding was denied at the DOE and Congressional level, not below. Why won't Congress fund it? (Kaplan) The HHES would like to know that too. The Subcommittee should work with its colleagues at ATSDR to learn all they know of it.

• We should consider communication between the Subcommittees; it would most likely be helpful. (Pardue)

• Were there individual recommendations for the Subcommittees different from the overview? (Davidson) The blinded data specific to the Subcommittee was included in their report, but no separate recommendations. The evaluation was of the entire advisory process, not each Subcommittee.

• How do we build on this information? ATSDR is planning a meeting of the Subcommittee DFOs on May 17-18 to review these recommendations and take them to the next step.

• What agency funded this very well done study, and was it a competitive proposal? (Pardue) NCEH's budget funded it, and it was guided by the Work Group. COSMOS has a Task Order contract with DHHS that was competitively awarded.

• What was the agencies' response to the report? (Lewis) After incorporation of the Work Group members' comments provided in December, COSMOS turned in the report to CDC/ATSDR in January and briefed agency staff and upper management. They received it positively.

• Which, a broad or narrow interpretation, would benefit this Subcommittee most? (Johnson) COSMOS could not say; that needs to be resolved by the Subcommittees and the agencies together. Both views exist in both arenas, although the agencies generally more reflect the narrow interpretation.

Dr. Davidson recommended a facilitated discussion of why the members participate individually, and the individual and collective goals and expectations of the Subcommittee; how those fit with ATSDR/CDC; how to envision and track the ORRHES' progress and accomplishments, and what benchmark to use to track progress. She asked the Agenda Work Group to work on that. She also wished for an evaluation of the ORRHES, hopefully by the September meeting but not later than the December meeting.

Ms. Kaplan recommended Ms. Linda Lewis as the facilitator and Ms. Dalton responded that ATSDR will consider that. Dr. Eklund noted that several times the work groups were referred to as Subcommittees, which is confusing, and asked that they be consistently referred to as Work Groups.

Public Comment

Mr. Bert Cooper, of ATSDR's Division of Health Assessment and Consultation, complimented COSMOS on their presentation. He stated that their recommendations are now before the senior managers at CDC and ATSDR, and anticipated that the recommendations will be well received. The DFO/Chair meeting also may lead to another national meeting such as was held in Salt Lake City.

Ms. Linda Lewis suggested that something be facilitated on how the Subcommittee interacts and relates with DOE and others, as related to the concept of trust, and expressed her enjoyment of the opportunity to interact with the Subcommittee on the previous evening. She cited Steven Covey's "Seven Habits of Highly Effective People", and its list of five things to propel people through life with a purpose and to create one's own destiny: live, love, learn, laugh, and leave a legacy. She advised again that the Subcommittee knock on the doors that can open, not those that will not.

Mr. William Carter, of ATSDR's Division of Health Education and Promotion (DHEP) and the AOEC technical project officer for site work, reported having been present at many sites were HRSA and ATSDR were raised. He advised against raising unrealistic expectations. HRSA places clinics in communities that are medically underserved, and their book of guidelines and criteria to do so are extensive. So far, ATSDR has not found a single community that fits their criteria. He suggested that the Subcommittee consider inviting HRSA to the meeting to explain those criteria. He added that the needs assessment is being done by one of the DHEP Branches, whose staff will return in future to discuss the Phase II work.

Mr. Jerry Pereira stated that Ms. Dalton, in collaboration with Dr. Davidson, will maintain the same log as HHES'. He agreed that the agency should ask for consensus recommendations for milestones and goal-oriented tasks. And, regarding outreach, he stated ATSDR's good-faith effort to have the community well represented by the Subcommittee's membership. One area in which the outreach could begin could be to develop a fact sheet with ATSDR.

Presentation of the HHES Web Page

Ms. La Freta Dalton projected the title page of the HHES Website for the consideration of the ORRHES home page suggested by some members. The HHES site posts its brochure; committee roster and brief biographies in English and Spanish; meeting agendas and presentations; Frequently Asked Questions; minutes (downloadable in html or pdf files) and other Subcommittee materials; links to other agencies, citizen and tribal groups; and links to other studies done (for example, the Hanford Thyroid Disease Study); maps of the Hanford site itself and its relationship to surrounding communities; and a What's New section with sub-topics below.

Drs. Frome and Brooks volunteered to help built the site, which is being coordinated through the Communications/Outreach Work Group, and distributed a one-page summary of what might be included on a Website. Dr. Frome expected that many maps of Oak Ridge already exist that can be linked to. He asked who would support the work. Ms. Dalton thought that ERG would most likely conduct the needed conference calls, but first a map of the site's content has to be done. ERG will help develop it and it will placed on the CDC server. Ms. Kaplan asked for volunteers for the Communication and Outreach work group. Volunteers were Hill, Creasia, Brooks, Frome, Sonnenburg, and Kaplan. Dr. Davidson confirmed that a Subcommittee member can serve on multiple work groups; they are expected to know their own limitations.

Work Group Reports

Agenda Work Group.

Dr. Brooks provided an advance notice of the June meeting agenda, and the Agenda Work Group's program of work (Attachment #7). The Agenda Work Group provides input to Dr. Davidson, who advances it on to ATSDR. They return a draft agenda for Work Group review and then ATSDR prepares/distributes the final agenda. The Work Group meets twice to review the members' or Chair's agenda suggestions and then again to review the draft agenda to send to ATSDR. There might be interim communication if the Chair suggest special topics. Dr. Brooks suggested that the meeting start/top times be firm; otherwise the agenda can be flexible. There were no comments offered on this process.

A broad overview of what the Work Group may do in a Program of Work for the next 2-3 years was provided to the Subcommittee. Input is still needed from ATSDR on the public health assessment and Health Needs Assessment components. Dr. Brooks moved that the program of work be adopted as submitted, recognizing that it is a living document subject to change, for the use of the Work Group in delineating its future plans. The motion was seconded.

Dr. Frome offered an amendment to add to the motion to Put the program of work on the Website when set up, and with last update date. The amendment was seconded. All were in favor of the amendment

Further discussion on the main motion included:

• Dr. Creasia wondered about the utility of the agenda, since it is a draft until the day of the meeting and can be changed at any time. Ms. Dalton responded that this is done to allow some flexibility if something important arises that needs to be addressed. The draft is published to let the community know when something that they are interested in will be addressed; and often, it is not changed.

• Ms. Sonnenburg and Mr. Hill realized that the Work Group had discussed this plan, but had not adopted it. Dr. Brooks agreed that it was not voted upon. The Work Group discussed the need for a program of work, and this was circulated. He expected this document to be modified relatively frequently in the next few weeks and offered it to serve as a base so that the discussion would not need to be renewed each time.

• Ms. Sonnenburg noted that the Chair had asked the Agenda Work Group to discuss its purpose and program of work. She moved to table the main motion to the next meeting, to consider it as a working document at the next meeting. Mr. Johnson seconded the motion. In discussion, Dr. Eklund opposed the postponement, since this is a living document. Adopting it would remove it from draft status and allow work on only the sections to be modified. Dr. Davidson commented that the advantage of postponing would be to first allow the facilitated discussion of the Subcommittee's overall goals and purpose.

A vote on the motion to table revealed three in favor: and 11 opposed. The motion failed. A vote on the main motion to adopt the program of work revealed 14 in favor and none opposed. The motion passed.

Procedures and Guidelines Work Group

Dr. Davidson reported on changes made to the Bylaws document since the January meeting (Attachment #8). The Work Group recommended that:

1. Since the bylaws are now a self-contained document of itself, that the procedures and guidelines be an appendix to it.

2. All bylaws derived from FACA requirements, GSA rules, or the Subcommittee charter will be identified by an asterisk and footnoted to indicate they cannot be changed.

3. Information on work groups was consolidated under one article (Article IX).

4. Changes were made to indicate that the Subcommittee can meet by conference call if published in the Federal Register and open to the public.

5. The general order of business was modified according to Subcommittee recommendations (including the public comment period).

6. Article X, Section 6 was added to specify that all major recommendations require a two-thirds affirmative vote at the meeting to indicate consensus.

Committee discussion and Dr. Davidson responses to questions included:

• What constitutes a "major recommendation"? What is not one, for example, is an action item to have the ATSDR provide materials. If it is disputed, and is not advice to ATSDR, a simple majority vote decides.

• Is the conference call an option for a regularly scheduled Subcommittee meeting, or limited topics? It is for emergency situations.

• When can and cannot a member discuss Subcommittee matters with the media? Ms. Kaplan had written a letter to the editor and sent it in courtesy to Ms. Dalton, although it concerned a matter discussed and voted on in the meeting. Ms. Dalton responded that when she considered this issue, she felt that it needed to be addressed within the Subcommittee itself. Dr. Davidson stated that the letter's subject matter had been brought to a Work Group, not the Subcommittee, and should not be discussed with the media until the overall Subcommittee is finished with addressing it. Members will disagree, but to do so in public will be self-defeating. The Subcommittee cannot restrain individual members, but it is left up to the members to be careful to not confuse the public about where the Subcommittee's opinion lies as opposed to that of an individual. The Subcommittee as a whole will be issuing information to the public.

• Ms. Kaplan moved to amend Article 10, Item 13 (regarding observers' comments only at specific times) to modify the first sentence to state "...unless the Subcommittee allows an observer to speak." Dr. Davidson favored that if the comment were a technical one, but did not want to confuse the public of when the formal public comment period is. However, Ms. Sonnenburg supported the motion. If an issue has been discussed and the members are ready to vote, relevant public input should be allowed before the vote is taken. Ms. Lewis also advised flexibility in working with the public, but Mr. Johnson commented that keeping the agenda on time could be a challenge, given enough interruptions.

• Other comments included:

  • Accept the bylaws first, then make changes.

  • Delete "expertise" since many issues the Subcommittee addresses will deal with emotion and perception. The public should be able to comment on anything as long as It is germane to the issue.

  • There should be sufficient control to allow germane comments, but perhaps this should be in the section about solicitation of experts instead (Article 4, Section 5), to allow comment by a "technical expert or a person with information germane to the topic".

  • That is acceptable, but also amend #13, and leave out the word "only;" retain that observers may speak in the public comment period.

  • A vote was taken to rewrite Article 4, Section 5: "Non-members may be granted the privilege of full participation (except voting) in the discussion germane to the topic by a simple majority vote of the Subcommittee."

- Ms. Mosby thought the Bylaws are addressing too much; such details should be on the procedures and policies, which are easier to revise. But, since the Work Group had already addressed this and time was pressing, Dr. Davison called for a vote. Eleven were in favor and four opposed. The motion passed. Similarly, a vote to amend Article 10, Section 13, to delete the word "only" revealed 13 in favor and two opposed. The motion passed.

Dr. Frome moved to add that the Bylaws be posted on the ORRHES Website, when available, with links when appropriate. The motion was seconded and unanimously adopted.

Dr. Brooks moved to adopt the bylaws as changed by the previous motions. The vote was 13 in favor: and two opposed. The motion carried.

Communications/Outreach Work Group

Ms. Kaplan pointed out the changes to the Communications/Outreach Work Group's purpose and statement of work (correct copy 2/12/01, Attachment #9). Mr. Hill moved to adopt the amended documents. The motion was seconded; with 13 in favor and none opposed, the motion carried. Ms. Kaplan pointed out that the proposed communications strategy would replace "MP" with "Designated Federal Official" and delete the parenthetical example (e.g.,...). The amended communications strategy was adopted with 12 in favor and none opposed.

Ms. Kaplan reported several more items:

• She noted that the article "Inconclusive By Design" and ATSDR's related comments were distributed. She appreciated that ATSDR had taken some action to address the issues raised in that paper.

• She reported having received a personal e-mail letter from Peggy Atkins suggesting ways to better communicate with the public. Ms. Kaplan responded, and asked her permission to forward it to the work group/committee. Dr. Davidson suggested that the Work Group also provide a formal response.

• Ann Rigell, of the Oak Ridge Associated Universities, proposed a workshop for the Subcommittee on conflict resolution skills, understanding personality types, etc.

• Mr. Washington asked why. The members were chosen to reflect the wide, outspoken, honest different views of the public. Consensus need not be achieved on every item discussed; that is why votes are taken; and minority opinions can be included if desired in the final document.

• However, Mr. Johnson raised the members' implicit mission to educate the community as well. It will be a major job to rebuild credibility with the community; they should be involved in such a workshop as well.

• Dr. Davidson noted that this could be a way to learn a mechanism to help draw out the quieter members. She found agreement to refer this back to the Work Group for a recommendation at the next meeting.

• Ms. Kaplan distributed for the members' consideration a proposed mission statement for the ORRHES date 3/17/01, in anticipation of the next meeting's discussion. She clarified for Mr. Manley that non-Cold War worker residents refers to the residents who are not covered by programs in place to address the workers needs.
  

Health Needs Assessment Work Group

Ms. Mosby raised the need to redefine the Work Group's work, as discussed on the previous day, and return with that for discussion in June. She requested any other suggestions for the key informant list or the focus group list (Attachments 4/5). However, Dr. Malmquist requested immediate action. The Work Group had reviewed a map and outlined the areas they suggested should be covered by the telephone survey. It reduced the potential population from 700,000 to 200,000. Ms. Sonnenburg moved to adopt the map as the area for the phone survey, to allow discussion. Dr. Malmquist seconded the motion. The Subcommittee took a short break to allow all the members to review the map. On reconvening, Dr. Malmquist volunteered to re-draft and form a boundary in document form to follow the outline on the map.

Committee discussion included:

• Mr. Pardue supported this as a sound and good approach. The areas should include everyone who have a technical justification for being included. He had been uncomfortable with his vote to drop Blount County since that decision was made, because it has many resident workers as well.

• Mr. Hill agreed, and wished for community comment before the vote.

• Dr. Creasia asked that a summary of the rationale be part of the record with the map.

• Mr. Manley asked what contaminants were considered. Dr. Malmquist identified iodine and wind flow (the reason part of Blount and Knox counties were included) and for liquid flow, all the areas to the Watts Bar Dam.

• Mr. Lewis stated that the Group used the pathways identified by Mr. Hanley as potential exposures and consulted with experts, and supported Mr. Pardue's comment. He also felt more comfortable with the area now.

On a another Work Group matter, Dr. Brooks moved that the Subcommittee approve the Work Group's list of key resources to send to ATSDR, to be advanced to George Washington University for compilation by GWU, with additional input. Ms. Sonnenburg commented that this was Dr. Brooks' own list, and that there was no need to vote on a list this day. Mr. Lewis suggested slowing down and not rushing. Dr. Davidson agreed that an emergency meeting could be held if needed. Mr. Lewis asked Dr. Parkin to clarify the groups of people suggested. She identified the three categories as health care providers and community members knowledgeable of health matters, and health officials at any level, for the focus groups. Physicians and Health department personnel could also be covered in the key resource interview phase. On a vote, three were in favor and 11 were opposed. The motion failed.

Dr. Davidson referred the list back to the Healths Needs Assessment Work Group for further refinements, and expected to call an emergency meeting after April 23. The Subcommittee agreed to hold a conference call at noon on April 24th to review the list. A meeting site for those who can meet will be selected and conference call arrangements will be made.

Ms. Theresa NeSmith of ATSDR noted that the names on the list generated will be part of the public record. For that reason, at least twice as many names as needed would be required to preserve confidentiality. If only a few are listed, everyone will know who is chosen.

Unfinished Business

Report on EPA Sampling. Ms. Cheryl Walker-Smith, Remedial Project Manager, reported on the status of media sampling done by EPA in Scarboro. It was put on hold due to EPA's priority of working with the Department of Justice on the Paducah issue. An Interagency Work Group was established to address not only sampling in the Scarboro community, but to prepare a work plan for sampling offsite for the entire Oak Ridge Reservation. A meeting to do so was held on February 22, 2001, with participation by DOE, TDEC, the Tennessee Health Department, ATSDR, and EPA. EPA would like the ORRHES to review the sampling plan.

The committee's comments included:

• How long do you think it would have taken to do the Scarboro work? (Lewis) Man hours were not the issue; it was that the one person assigned to Scarboro was reassigned to Paducah. It might only take 2-3 days. The EPA also has had comments about focusing so much of its work only on Scarboro.

• When will you start? (Manley) That has not been decided; a work plan has not even been drafted yet. EPA has to do that first. EPA will keep this Subcommittee updated when activities are planned.

• Are there plans to meet again before our June meeting? (Davidson) Yes, but no date has been set. The ORRHES will be notified if it occurs before the June meeting, so that they can schedule a progress report.

Geographic area of interest/phone survey: Mr. Pardue moved that the Subcommittee formally accept the map for the telephone survey area, including Blount County. Mr. Washington seconded the motion, and a vote showed 14 in favor and two opposed. The motion carried.

Seating a DOE Liaison. The Subcommittee held a discussion of the question of seating a DOE liaison, which was raised at the last meeting. The Subcommittee's comments included:

• Neutral view: The Subcommittee needs facilitation to help examine the trust issue with DOE (Lewis); I cannot trust the bureaucracy, but there are individuals who can be trusted. The issue is, will it hurt the ORRHES' credibility? (Kaplan)

• Positive view:

  • EPA, ATSDR, and CDC have all been mistrusted as well. Trust needs to be developed. The Subcommittee cannot ask the public to trust DOE if it doesn't even trust them to sit at the table. DOE is a major player in all the issues of importance to the Subcommittee and will be here long after DHHS leaves. They should be seated. (Brooks)

  • The current staff are trustworthy; the best way to solve a problem is to talk about it. (Pardue)

• There are many kinds of trust; for example, to be open, honest, do the right thing, answer questions, or push the envelope on what Congress allows. Perhaps these cannot all be achieved, but they need to be teased out. Some mistrust is due to misunderstanding. DOE should be seated to address what can be addressed. (Akin)

• DOE has acted proactively to individuals' benefit (e.g., to procure needed data from Union Carbide). (Frome)

• Mr. Joseph has attended every meeting, and could give direct input and be more available to the Subcommittee seated at the table. (Davidson)

• Negative view:

• Trust comes from behaving/acting as say you will. DOE has begun to come around, but not enough for the community to forget past grievances. Due to that past history and lingering doubt, they should not be seated.  (Eklund)

• With them formally present, people will not speak honestly about things they know occurred. (Washington)

• Tim Joseph does a fine job of supporting the Subcommittee. But there will be those in the community who will never believe the results of the Subcommittee's work as long as DOE is at the table. The support needed can be obtained without them on the Subcommittee. (Craig)

• The issue is not so much the Subcommittee's mistrust, but the community's. If it does not gain the ORRHES anything, but costs it the community's confidence, DOE should not be seated. Community input was requested. (Hill)

Dr. Brooks moved the Subcommittee make a minor recommendation of seating the DOE liaison to ATSDR, in which the majority voted in favor and the minority were opposed. Several member objected that this was not a minor decision. Ms. Sonnenburg moved to table the motion to seat a DOE liaison to the ORRHES to the next meeting, and suggested that the Procedures and Guidelines Work Group develop a definition in writing of what constitutes a major and minor recommendation. The motion was seconded, and in a voice vote, those in favor carried the motion over two opposed. Vote to table carried.

New Business.

Mr. Bill Murray, ATSDR's liaison in Oak Ridge, provided the phone and address of the ATSDR office: (865) 220-0295; (-0457 for fax), at 197 South Tulane Avenue. The hours are 12-7, Monday-Thursday; and 7-3 on Friday. The office could be open another evening from Tuesday to Thursday as well. Mr. Lewis liked that idea, since the Subcommittee had been criticized for holding meetings during "office hours.

Mr. Murray asked for a preference on hours (11-7 or 12-8), and what other evening than Monday the office should be open. Dr. Davidson noted that most Work Group meetings are on Tuesdays. Dr. Brooks felt there was no need to expand the hours without support services. He lamented that the copier is inadequate to produce materials for meeting such as this or even work groups; there is no supply support; chairs, tables, shelf space, and reading materials are missing; and the computer system is not up to par. He recommended that ATSDR look at how it is supporting its office. Dr. Brooks moved that ATSDR in a timely manner upgrade the field office's resources available for the Subcommittee and public's use. Mr. Pardue seconded the motion. Dr. Frome asked that the general resources include good maps, and Mr. Murray welcomed all suggestions of needed material. On a vote, 14 were in favor and none were opposed. The motion passed.

Mr. Murray then suggested that the members take some off-site tours of the ORR area at each of the next three meetings (June, September, December). Mr. Joseph had offered to facilitate a "windshield tour" to make the members familiar with the geographic area.

Committee comment included:

• It would be better to read about it than to just drive by. Get a pass and bus through. (Hill) It is very easy to get on the reservation; a pass only requires name, affiliation, and purpose. (Galloway) Mr. Joseph agreed; only Y-12 is a challenge to enter.

• Dr. Brooks thought the tour could take only two hours, as done for GWU. But Mr. Murray responded that they did not need the same degree of understanding about the site. A tour of the ETTP, K-25, and X-10 could be done, but he preferred the logistics of a separate tour to taking 2-3 hours out of the meeting time.

• Dr. Davidson suggested that Mr. Murray work on a plan for a tour of 1-2 sites (no preference) at the next meeting.

• Finally, Mr. Murray reported that having received a memo from the Oak Ride Institute for Science and Education that they would present the first "State of ORISE" report in Pollard Auditorium, Thursday, March 22, at 5:30 p.m. They will present ORISE's past activities and future plans.

Public Comment was solicited to no response. Dr. Davidson reiterated that call several times in the next half-hour.

Mr. Pardue asked Mr. Stewart if the recent legislation passed to compensate workers helped at all. Mr. Stewart figured that it would help about 50, out of the 181,000 current and former workers, who have one of the 11 specified types of cancer, including berylliosis and silicosis. Mr. Hill reported ongoing discussion about this, which takes effect in July. The worker advocacy group at DOE Headquarters has received different answers about whether this is the sole source and only opportunity for redress. That is of concern, because it appears that this program would eliminate the previous option of litigation or compensation by other state or federal programs.

Mr. Lewis asked if there is any avenue for the worker's voice other than NIOSH. Mr. Stewart said that the DOE-funded worker medical survey is the most positive thing to date, demonstrating the need. It will provide a Catscan at the union hall; there already is a backlog on that of 1000 people. They can do 140 scans a week; and only have it for two weeks. The Catscan is able to detect a lung cancer about two years before it appears.

Ms. Kaplan commented that the Workers' Compensation Act does not mean that everything is settled. The Radiation Exposure Act was passed in 1990 to compensate workers exposed from 1941-1971, but many workers or their surviving families have not yet received any compensation. Without Congressional appropriation of the necessary funding, the legislation is meaningless.

Housekeeping/Closing Comments

Participation in the work groups has been very low, Dr. Davidson noted. The Bylaws require a quorum of work group members to do a work group's business. She asked members unable to participate, to remove their name from the roster to allow the quorum to be accomplished. She asked that the Chair be notified if a member cannot attend a particular meeting; a conference line could allow dial-in participation.

Quorum. She also reminded the members that a quorum must be maintained while the Subcommittee is in session and discussion. Copying Materials. Copying charges are very high at the mall. Dr. Davidson asked that materials be provided before Ms. Palmer leaves Atlanta, which will also allow them to be put in the meeting folders in agenda order. She advised the members, on Ms. Mosby's question, to check with Mr. Murray on how to deal with copying and purchasing materials for the Work Groups.

Consultant fees: Ms. Palmer reported having worked with the Personnel Department to arrange for consultant fee payments to be caught up after this meeting. She asked the members to call her if that had not occurred after a few more weeks.

Work Group meeting schedules Ms. Dalton asked the members to let Mr. Murray know when work group meetings are scheduled so that he can attend as the ATSDR representative, as required by FACA.

With no further comment, the meeting adjourned at 3:54 p.m.

I hereby certify that, to the best of my knowledge, the foregoing Minutes are accurate and complete.

Kowetha A. Davidson, Ph.D., Chair

Attachments:

• Letter from Ms. Janice Stokes

• Public solicitation for nominations

• Table 3-5 assigned all the table 3 contaminants to pathways

• Telephone survey modified submission from GWU

• Characteristics of focus groups

• Key resource groups/individuals list

• Agenda Work Group Program of Work and advance copy, June meeting agenda

• Changes made to the Bylaws document

• Changes to the Communications/Outreach Work Group Purpose and Statement of Work (correct copy 2/12/01)

• Motions Passed, ORRHES March 19-20, 2001 Meeting

• Action items list

Attachment #10

Motions Passed, ORRHES March 19-20, 2001 Meeting

Dr. Craig moved to form a Public Health Assessment Work Group. Work Group volunteers were: Johnson, Craig, Brooks, Manley, Washington, Lewis, and Kaplan.

Dr. Brooks moved that the Subcommittee recommend to ATSDR that a minimum of 7 and maximum of 11 Subcommittee members participate in a pilot test with George Washington University to determine the appropriateness of the survey questions.

Dr. Brooks moved that the Needs Assessment Work Group choose the 7-11 members, the majority wishing to participate to be selected from the Work Group and the balance from the Subcommittee. Work Group volunteers were: Vowell, Sonnenburg, Johnson, Galloway, Brooks, Creasia, Hill, Malmquist, Kaplan, Lewis, and Mosby.

Ms. Mosby moved that the Subcommittee accept the Work Group's recommendation to identify George Washington University's Step 4 as the Key Resource Group, Step 5 to be the Telephone Survey and Step 6 to be the Focus Groups.

Dr. Brooks moved that the program of work be adopted as submitted, recognizing that it is a living document subject to change, for the use of the Work Group in delineating its future plans. Dr. Frome offered an amendment to add to the motion to put the program of work on the Website when set up, and with last update date.

Ms. Kaplan moved to rewrite the Bylaws' Article 4, Section 5: "Non-members may be granted the privilege of full participation (except voting) in the discussion germane to the topic by a simple majority vote of the Subcommittee."

Ms. Kaplan moved to amend Article 10, Section 13, to delete the word "only".

Dr. Frome moved to add that the Bylaws will be posted on the ORRHES Website, when available, with links when appropriate.

Dr. Brooks moved to adopt the bylaws as changed by the previous motions.

Mr. Hill moved to adopt the amended documents of the Communications/Outreach Work Group's purpose and statement of work (correct copy 2/12/01). Similarly, Ms. Kaplan moved to accept the amended communications strategy.

Mr. Pardue moved that the Subcommittee formally accept the map for the telephone survey area, which includes Blount County.

Ms. Sonnenburg moved to table the motion to seat a DOE liaison to the ORRHES to the next meeting, and suggested that the Procedures and Guidelines Work Group develop a definition in writing of what constitutes a major and minor recommendation.

Dr. Brooks moved that ATSDR in a timely manner upgrade the field office's resources available for the Subcommittee and public's use.

Attachment #11

MARCH, 2001 ACTION ITEMS LIST

• ATSDR will report on the dose reconstruction feasibility study report's consideration of the potential cumulative effect from other radiation sources (e.g., NTS).

• ATSDR will present the findings of the technical review of the dose reconstruction feasibility study (and if those comments were addressed), and then discuss next steps; and will provide copies of correspondence with Dr. Kathleen Teeson regarding fluorine.

• Dr. Frome asked that the peer review status be specified for any material provided to the Subcommittee.

• The Public Health Assessment Work Group will discuss with ATSDR, in developing the plans for the public health assessment, concerns expressed about peer review, limestone/water contaminant transport, carbon tet, depleted uranium, and other issues raised.

• HRSA could be invited to describe what they can do in terms of opening an area clinic.

• The Agenda Work Group was asked to explore facilitation for a Subcommittee discussion about why the individual members are participating, their goals and expectations (individually and collectively); how those fit with ATSDR/CDC's work; how the Subcommittee interacts and relates with DOE and others as relates to the concept of trust; and how to envision and track (with what benchmarks) the ORRHES' progress and accomplishments.

• Dr. Davidson would like an evaluation of the Subcommittee, hopefully by the September meeting but not later than the December meeting.

• The DHEP Branch doing the Needs Assessment will return in future to discuss the Phase II work.

• Several things were asked to be placed on the Website, when implemented.

• The Agenda Work Group will discuss its purpose and program of work. The updated working document will be held as the primary material to be used for discussion at the next meeting.

• Ms. Kaplan's proposed mission statement (3/17/01) for the ORRHES was provided for the members' consideration in anticipation of the next meeting's discussion.

• The Health Needs Assessment Work Group will re-draft and form a boundary in document form to follow the telephone survey that was outlined on the map during this meeting.

• ATSDR will send the action items list to the members.

• A conference call will be held at noon on April 24th to review the key informants list. A meeting site for those who can meet will be selected; and conference call arrangements will be advised.