ORRHES Minutes
August 26, 2003
Update on the ORR Needs Assessment [continued]
HENAWG Recommendations. Mr. Lewis noted that the recommendations on
the final needs assessment report are a direct result of HENAWG’s
findings from its critique of the overall methodology; assessment of
the purpose, techniques and results of the four project components; review
of the final draft report; and evaluation of the results. Ms. Mosby read
HENAWG’s formal recommendations into the record.
The Needs Assessment Working Group (NAWG) of the Oak Ridge Reservation
Health Effects Subcommittee (ORRHES) recommends that the ORRHES adopt
the following recommendations and submit them to the Agency for Toxic
Substances and Disease Registry:
"Whereas, the report, Assessing the Health
Education Needs of Residents In the Area of the Oak Ridge, Tennessee – Final Report May 23,
2003, has been received by the NAWG and has been reviewed by members
of both NAWG and the broader ORR community, and
Whereas, the totality of the many and diverse comments have been collected
in detail and summarized by an ad hoc NAWG committee in an attached report,
Summary and Compilation of All Comments on the GWU Health Education Needs
Report, and
Whereas, the collected comments reveal serious deficiencies in the report
and generally reject the report as a further basis for any Public Health
Education Program (PHEP), be it therefore
Recommended that the subject report not be used as the basis for any
future public health education program conducted in the ORR region, and
be it further,
Recommended that any future ATSDR/PHEP activities related to PHA be
based upon the findings of the Public Health Assessment Program (PHAP)
which should, with the advice of ORRHES, ascertain the following:
- The degree to which releases of contaminants from the DOE sites contributed
to regional public health problems,
- The degree to which there is a need for additional public health
educational services,
- The degree to which the existing Public Health and medical
services establishment can supply any substantive unmet public
health education
needs in both the rural and urban areas,
- The degree to which ATSDR might meet any additional needs
by augmenting the current system by printed material or presentations
by experts.
Not to do this will very probably result in the duplication
of much effort as well as be an affront to the existing health
care
system,
- The degree to which any necessary educational effort
can avoid the
onus of distrust that has cursed all previous efforts,
and be it further,
Recommended that ATSDR examine the project structural and management
components which enabled the report and project to reach this state
without ATSDR overview and without subcommittee or working group review
that
could have remedied its shortcomings.”
The recommendations and comments on the final draft needs assessment
report were submitted into the record and are collectively appended to
the minutes as Attachment 1. A motion for HENAWG’s formal recommendations
and supporting materials to be adopted and forwarded to ATSDR was properly
made and seconded by Dr. Malmquist and Ms. Sonnenburg, respectively.
There being no abstentions, opposition or further discussion, the motion
unanimously carried.
HENAWG Lessons Learned. Mr. Lewis conveyed that three major issues caused
problems with the needs assessment process. First, ATSDR management did
not perform periodic reviews of key steps. This approach would have provided
an opportunity for HENAWG to inform GWU if efforts from previous site
activities were being duplicated; if ORR historical data were being fully
utilized; and if next steps in the project were appropriate. Regular
status reports also would have provided an opportunity for ATSDR and
HENAWG to review and modify the project time-line as needed. For example,
in November 2000, HENAWG asked ATSDR to present a model needs assessment
to strengthen the knowledge of the members in evaluating the ORR study.
ATSDR did not respond to this request for nearly 28 months, but HENAWG
met its deadlines in providing ATSDR with target areas and contact information
for potential focus group participants.
GWU informed HENAWG of problems associated with Institutional Review
Board approval, but these delays should have been anticipated when the
project was originally developed and the time-line should have been modified
accordingly. Poor planning and management of the project indicate that
the time-line was not thoroughly reviewed before being presented to HENAWG.
Overall, the lack of oversight resulted in a product that failed to meet
ORRHES’s expectations.
Second, the decision by ATSDR management to block collaboration between
HENAWG and GWU resulted in a loss of trust and suspicion in the needs
assessment effort. After a HENAWG meeting, GWU refused to communicate
with and provide feedback to the members. As a result, HENAWG was forced
to conduct its activities without input from GWU. Third, GWU’s
failure to identify historical health concerns from the literature or
obtain similar information from the needs assessment interviews or telephone
survey resulted in a loss of critical data essential to the public health
assessment (PHA) effort and the community. According to ATSDR’s
Public Health Assessment Guidance Manual (PHAGM), environmental data,
community health concerns and health outcome data are the three major
components of a PHA.
The PHAGM further states that community health concerns associated with
a site constitute a key data point for all PHAs since this information
is needed to evaluate exposures and health effects. Dr. Falk has made
statements that are consistent with the PHAGM, but ATSDR’s implementation
of these guiding principles is questionable. During the June 2003 ORRHES
meeting, for example, Dr. Falk noted that public comment periods are
not an effective mechanism to engage the public and address community
health concerns. A review of historical data to capture comments previously
voiced by residents in various counties would yield more meaningful results.
As evidenced in its recommendations to ORRHES, HENAWG has rejected the
outcomes in three of the seven steps of the needs assessment: key resource
interviews, telephone survey and focus groups. If ATSDR accepts ORRHES’s
recommendations, the needs assessment will revert back to the literature
review outlined in step two of the study design. Mr. Lewis acknowledged
that HENAWG is uncertain about the future direction of the project at
this time. However, the ORR community deserves a solid product and an
accurate accounting of health concerns at the site, particularly since
ATSDR and ORRHES have devoted nearly three years to the needs assessment.
Several actions can be taken to improve overall performance and meet
the needs of the ORR community.
A mechanism should be developed to identify and fully utilize existing
resources. ATSDR should provide ORRHES with additional details about
the health education plan and the process by which this activity will
be integrated with documented community concerns. Some activities conducted
by ORRHES Work Groups should be combined to complete the needs assessment
in a more efficient and timely manner. The goals and time-line of the
project should be clearly defined in writing; concrete examples of needs
assessments completed at other sites should be provided to HENAWG as
well. ATSDR should seek input and support from ORRHES.
Despite these deficiencies, Mr. Lewis was pleased that ATSDR’s
efforts to gather community concerns and issues have significantly improved
over the past three months. New staff members with community expertise
have been hired; ATSDR has a stronger presence at workgroup meetings;
and documents about ORR site activities are more widely disseminated.
He clarified that HENAWG’s critique of the needs assessment is
not intended to dwell on past mistakes. Instead, ATSDR should use the
lessons learned to develop a solid plan and advance to next steps in
the project.
Open Forum with ATSDR. Dr. Elizabeth Howze, the DHEP Director, thanked
Mr. Lewis and the other HENAWG members for contributing their time and
effort in providing valuable input during the needs assessment process,
critiquing the final draft report and formulating solid recommendations.
She emphasized that DHEP is committed to engaging in a collaborative
effort with ORRHES to develop health education activities at the site.
DHEP will also be responsive to issues and concerns ORRHES and the community
have raised about the project. Similar to ORRHES, ATSDR also learned
several lessons about the needs assessment and has expressed similar
concerns about the final draft report.
The document did not meet DHEP’s expectations of a needs assessment
since this activity is specifically designed to identify information,
programs and other activities that will be useful to a site in the future.
DHEP is currently discussing its concerns and lessons learned about the
needs assessment with GWU. ORRHES’s comments, findings and formal
recommendations will be communicated to GWU as well. Dr. Howze clarified
that the cover page shows the May 23, 2003 version as a “final
report,” but the document is actually a draft. A final report will
be developed to reflect ORRHES’s concerns and formal recommendations
and also to incorporate additional data requested by ATSDR. In the future,
ATSDR will clearly define its expectations of a needs assessment before
the project is developed. The community will be actively engaged throughout
all components of the study. ATSDR will provide much more oversight and
follow-up of its contractors.
Dr. Howze was pleased that despite the problems with the needs assessment,
ORRHES is still willing to partner with DHEP in the project and advance
to next steps. As an initial effort, DHEP proposes to meet with ORRHES
to jointly identify and discuss the future direction of environmental
health-related activities at the ORR site. She acknowledged that ATSDR
is fully aware of the need for federal agencies to communicate with the
community when site activities are conducted. As the first step in this
direction, DHEP looks forward to its partnership with ORRHES in addressing
critically important issues in the community.
Dr. Cember pointed out that the target audience is not clearly identified
in the needs assessment report. The “community” covers a
wide range of diverse populations, including physicians and kindergarten
students. Dr. Howze agreed that this issue was another shortcoming in
the report. A needs assessment should provide guidance in identifying
residents with specific needs in certain geographical areas of a site,
such as those who believe they are at higher risk of exposure or those
who believe they need health information. She acknowledged that the ORR
needs assessment failed to produce this information.
Ms. Sonnenburg noted that ATSDR contracted AOEC and GWU to conduct the
needs assessment before ORRHES was established. Since the decision to
focus on health education needs at the site was made without feedback
from the members, ORRHES was not provided an opportunity to discuss the
needs of the community and provide input on this issue early in the process.
Although the ORR community can benefit from a needs assessment, the need
to include “health education” in the project is uncertain.
Based on Ms. Sonnenburg’s experience, ORR residents are more interested
in prevention, care and treatment of environmental health problems rather
than health education.
Dr. Howze recognized that many residents often misinterpret health education
as a classroom lecture, but the activity actually has a much broader
scope. For example, a community member with exposure to a contaminant
may present to a physician who has no knowledge or skills to address
environmental health concerns. This situation would cause stress to the
physician, patient, family members and ultimately the broader community.
To address this concern, ATSDR would provide educational materials and
hold training sessions to strengthen the capacity of local providers
to diagnose, counsel, treat and follow patients with environmental health
problems. In conducting health education activities, ATSDR also attempts
to identify and utilize resources within the community. For example,
many residents have expertise in health care, while others serve as strong
leaders at the local level.
Mr. Lewis mentioned that ATSDR has completed several successful health
education projects, such as materials on iodine-131 for the Hanford site
and the chelation videotape. He questioned whether ATSDR plans to duplicate
some of these models in the ORR community. Dr. Howze confirmed that ATSDR
tailors environmental health materials for a particular site and distributes
information to address specific concerns of the community. However, she
reiterated that the decision to disseminate health education materials
or conduct other types of projects at ORR will be made in full partnership
with ORRHES. ATSDR will also seek ORRHES’s input on appropriate
target audiences, effective delivery methods, and the proper strategy
to translate scientific data for the lay public.
In the interim of these discussions, Dr. Howze described two site-specific
health education projects for ORRHES to consider. After past chemical
releases in Toms River, New Jersey were found to be the source of a cancer
cluster among young persons, ATSDR attended public meetings, discussion
groups and other events held by the community. ATSDR also met one-on-one
with individual residents. In response to the community’s request,
ATSDR facilitated grand rounds on leukemia and children’s health
with local physicians. ATSDR also partnered with the school system to
develop an environmental health curriculum and train teachers in disseminating
age-appropriate materials and educating students in grades K-12. The
legacy of the environmental health curriculum is a direct result of ATSDR’s
extensive interaction with the Toms River community.
Dr. Howze also reported that in Fallon, Nevada, ATSDR assisted residents
in developing a focused community response to childhood deaths from leukemia.
The community provided support to affected family members by ensuring
that mental health services and other programs were more accessible.
Under the community response plan, agencies at federal, state and local
levels actively involved Fallon residents in the ongoing investigation
at the site. Mr. Washington agreed with Ms. Sonnenburg that the needs
assessment will be beneficial to the ORR community. Residents are interested
in obtaining credible information about fish, vegetable or milk consumption,
air emissions, breast-feeding, exposure to contaminants, and other potential
risks from living near the ORR site.
Mr. Washington was confident that solid data produced by the needs assessment
will allow the community to separate fact from fiction. Dr. Howze confirmed
that DHEP will communicate scientifically sound results from the needs
assessment to the Division of Health Assessment and Consultation to ensure
public health assessors apply these findings to ORR PHAs. Mr. Johnson
noticed that ATSDR’s health education activities are targeted to
providers. He asked if similar products have been developed for community
residents. Dr. Howze replied that ATSDR has not developed community-based
health education initiatives, but several projects are underway in this
effort. A pilot program was recently launched and a community toolbox
with information, references and other resources for residents is currently
being developed.
Dr. Howze added that generic community-based health education activities
are extremely difficult to design because issues, concerns and other
site characteristics are different in each community. As a result, ATSDR
partners with the community to tailor materials and activities that will
be specific, appropriate and relevant to the site. In some areas, ATSDR
is training local spokespersons, influential residents and other community
leaders about health concerns and scientific issues at the site. The
lay health advisors then educate the broader community and disseminate
health education materials. This approach increases public access to
health information.
Dr. Davidson acknowledged that the majority of ORRHES’s comments
on the needs assessment were directed to GWU. As the contractor of the
project, however, AOEC had a responsibility to oversee GWU’s activities.
AOEC should have thoroughly reviewed and approved GWU’s deliverables
before submission to ATSDR. Dr. Howze emphasized that ATSDR does not
plan to subcontract any of its activities in the future. Moreover, ATSDR
expects to develop Phase II of the ORR study in collaboration with ORRHES
rather than use AOEC as a contractor on the project.
Dr. Malinauskas strongly suggested that ORR historical data be reviewed
to strengthen the final needs assessment report. Specific concerns previously
voiced by ORR residents and needs that were identified at the site should
be included in the final document. This approach may address study fatigue
at the ORR site that contributed to the low participation rate in the
needs assessment. Dr. Malinauskas noted that the final draft report indicates
GWU ignored existing data. Dr. Cember described a model for ATSDR to
consider in providing environmental health education to physicians. A
program was developed to increase the knowledge of physicians in radiation.
Training sessions were held at a resort hotel for one weekend each year
for ten years. Attendees who completed the course received continuing
medical credits. The program was eventually tailored to school teachers.
Dr. Howze agreed that federal agencies must explore innovative methods
to increase health education to both physicians and the community. She
pointed out that the clergy, teachers and other resources in the community
could assist in this effort. Dr. Davidson thanked DHEP staff for attending
and participating in the open forum. Based on the discussion, she charged
HENAWG as follows. The members should closely collaborate with DHEP to
identify next steps in the health education process for the ORR site;
develop a strategy to achieve these goals; and present the plan to ORRHES
for review, comment and approval. HENAWG should be prepared to present
the plan no later than the December 2003 ORRHES meeting. Any HENAWG member
who needs clarification on the new charge should contact Dr. Davidson.
Dr. Howze asked ORRHES to consider two additions to the charge. First,
the plan should also include a clearly defined process for DHEP to collaborate
and communicate with HENAWG and ORRHES. Second, HENAWG should be renamed
to ensure that the members and DHEP begin developing health education
activities for the ORR site without dwelling on past mistakes in the
needs assessment. Dr. Davidson amended the charge to include Dr. Howze’s
suggestions. The members should develop a strategy for DHEP to collaborate
and communicate with ORRHES and HENAWG. The members should review and
discuss HENAWG’s current role as outlined in the ORRHES bylaws.
If HENAWG determines that its purpose should be redefined and updated
and the change requires a modification to the ORRHES bylaws, Dr. Davidson
will assign this task to the Guidelines and Procedures Work Group. Ms.
Sonnenburg asked the HENAWG co-chairs to invite Ms. Adkins and Ms. Kaplan
to future meetings with DHEP. These ORRHES members can offer insights
about the community’s lack of trust with local physicians that
have been expressed by some residents. Ms. Mosby clarified that both
Ms. Atkinson and Ms. Kaplan are HENAWG members.
Public Comment Period
The Chair called for public comments; no attendees responded.
Work Group Reports
Public Health Assessment Work Group (PHAWG). Dr. Malmquist mentioned
that the members were charged with reviewing cancer incidence data at
the ORR site and reporting these findings to ORRHES. In conducting this
activity, however, PHAWG realized that a health statistics review (HSR)
by ATSDR and the Tennessee Department of Health (TDOH) Cancer Registry
would be more appropriate. PHAWG is now asking that its charge be amended
to conduct the HSR rather than collect cancer incidence data. The members
have already drafted a rough outline for the project. In collaboration
with the TDOH Cancer Registry, Ms. Dhelia Williamson of ATSDR will collect
existing data from the registry from 1990-1996 on 26 different types
of cancer. Cancer incidence data by county and region will be compared
to the state and age adjusted for each county.
TDOH will not release cancer incidence data by census tract due to the
small population and the ability for individual residents to be identified.
However, efforts will be made to identify cancer clusters in census tracts.
The HSR will not be designed to link cancers to a contaminant or other
source. Instead, the project will focus on the incidence of cancer at
the ORR site from 1990-1996 only. PHAWG, Ms. Williamson and Dr. William
Taylor of the Oak Ridge Field Office will convene a conference call within
the next two weeks to review the draft outline and discuss next steps
in the HSR. PHAWG hopes to present a status report of the project by
the December 2003 ORRHES meeting.
Mr. Lewis proposed that all health outcomes at the ORR site from 1990-1996
be included in the HSR, but Dr. Malmquist did not support this suggestion.
Although Dr. Cember agreed the HSR should only focus on cancer, he pointed
out that the name is misleading. He clarified that a “cancer statistics
review” (CSR) would be more appropriate. ORRHES accepted the name
change by general agreement. A motion to approve the recommendation was
properly made and seconded by Ms. Sonnenburg and Dr. Malinauskas, respectively.
PHAWG will conduct the CSR in collaboration with ATSDR and the TDOH Cancer
Registry. The CSR will be implemented in ORRHES’s geographical
area of concern to support the PHA process. There being no abstentions,
opposition or further discussion, the motion unanimously carried.
Dr. Davidson called ORRHES’s attention to the second PHAWG recommendation
that was distributed in the pre-meeting briefing packets. PHAWG requested
that the U.S. Environmental Protection Agency (EPA) Headquarters and
Region IV be invited to a future ORRHES meeting to address concerns about
the ORR site and discuss procedures EPA uses to interact with ATSDR and
ORRHES. Dr. Davidson explained that PHAWG’s recommendation is based
on two different sets of comments EPA Headquarters and Region IV submitted
to ATSDR on the Y-12 uranium PHA. ORRHES was understandably confused
and negatively impacted by this process. She asked if Headquarters and
the specific EPA region for a site attempt to reconcile comments on public
documents.
Dr. Malinauskas pointed out that the lack of communication was another
concern with this process. ORRHES discussed the article that was published
in a local newspaper regarding the response by EPA Headquarters to the
public comment version of the PHA on uranium releases from the Y-12 plant.
Mr. Jon Richards of Region IV weighed in on PHAWG’s recommendation
from EPA’s perspective. Although comments by Headquarters were
more detailed than those by Region IV, both sets were consistent. Region
IV reviewed all comments on the Y-12 uranium PHA made by Headquarters
before submission to ATSDR and also convened conference calls with ATSDR
to resolve any differences. Headquarters and Region IV submitted comments
on the PHA by e-mail only to ATSDR and an ORRHES member upon request.
Comments by Headquarters were published in a newspaper through actions
taken by an ORRHES member; EPA played no role in disseminating the comments
to the media or public. Overall, Headquarters can become involved with
any EPA activity throughout the country either independently or through
the specific region for the site. Dr. Charp and Mr. Hanley weighed in
on PHAWG’s recommendation from ATSDR’s perspective. ATSDR
disagrees with EPA’s position that comments between Headquarters
and Region IV were consistent. Nevertheless, ATSDR will respond to the
two sets of comments submitted by both Headquarters and Region IV. One
set of comments was in response to the initial release, while the other
set addressed the public comment draft.
ATSDR generally communicates with Region IV for ORR activities, but
Headquarters specifically requested a copy of the Y-12 uranium PHA. ATSDR
received comments on the initial draft from Region IV and then received
comments from Headquarters two months later after the public comment
draft was released. The comments from EPA Headquarters related to the
initial draft of the document; many of the comments had previously been
addressed in the public comment version of the document. ATSDR will present
its responses to comments by Headquarters and Region IV to both PHAWG
and ORRHES. The difference between versions of documents is as follows.
ATSDR only distributes an initial release or data validation document
to DOE, EPA, the state or other agency involved with the activity. The
purpose of this draft is for agencies to provide ATSDR with additional
data, correct existing information in the report and submit comments.
For ORR activities, ATSDR agreed to also release data validation documents
to ORRHES for review and comment. Despite this consideration, however,
other agencies are still not required to submit comments on initial drafts
to ORRHES. A data validation document serves as an internal government
working draft and is not shared with the public. ATSDR revises the initial
draft based on comments from the agencies and then widely releases the
document to the public. Similar to EPA, ATSDR also has no knowledge of
actions that were taken to distribute initial draft comments by Headquarters
to the media and ORR community.
The publication confused ORRHES because comments in the newspaper related
to the initial draft that ATSDR had previously addressed. Initial draft
comments by Region IV were not leaked to the public. Dr. Davidson acknowledged
that other agencies are not required to communicate with ORRHES, but
adverse effects on the ORR PHA process from any source must still be
conveyed. Ms. Mosby pointed out that this problem is another example
of members fighting the ORRHES process. Her position was that ORRHES
members cause more harm to the advisory process than agencies. Mr. Lewis
indicated that the leak of EPA’s comments to the media and public
stems from frustration in the community. If ORRHES convenes effective
meetings and produces solid products in a timely manner, these types
of problems will significantly decrease. Based on Mr. Richards’ remarks,
Dr. Malinauskas suggested that PHAWG’s recommendation be withdrawn.
No motion was made to approve the recommendation.
Communications and Outreach Work Group (COWG). Mr. Lewis underscored
the need to emphasize key presentations in ORRHES meeting minutes. He
plans to recommend to COWG that comments made by Dr. Falk during the
June 2003 ORRHES meeting be incorporated into the record. This approach
is extremely important since messages conveyed by Dr. Falk do not always
filter down to ATSDR staff. Dr. Falk’s comments also need to be
reviewed to identify the impact on ORRHES.
Agenda Work Group (AWG). Ms. Sonnenburg plans to discuss with the members
at the next meeting whether AWG is still needed.
Guidelines and Procedures Work Group (GPWG). Ms. Galloway reported that
the members have not met, but a process to correct minutes for all ORRHES
workgroups is on the GPWG agenda. GPWG plans to meet soon to review a
rough draft Ms. Galloway is currently developing. The new guidelines
for correcting and editing workgroup meeting minutes will be based on
a previously developed process as well as comments from ATSDR. Ms. Galloway
plans to present the document to ORRHES at the next meeting for review
and approval.
Mr. Lewis pointed out that workgroup members should specify the type
of document needed, such as detailed minutes, a verbatim transcript,
a record of discussion or minimum requirements of minutes based on Roberts
Rules of Order. Solid meeting minutes will result in less challenges
from the public. Most notably, key activities completed by the workgroups
should be clearly documented to increase public awareness and sustain
a strong legacy at the ORR site.
Public Comment Period
The Chair called for public comments; no attendees responded.
<<Back Next
>>
|