Oak Ridge Reservation: Public Health Assessment Work Group

Public Health Assessment Work Group

January 7, 2002 - Meeting Minutes

Attendance

Peggy Adkins
Gordon Blaylock
Paul Charp, ATSDR
Bob Craig
Kowetha Davidson
Bob Eklund
Karen Galloway
Linda Gass (phone)
Jack Hanley, ATSDR (phone)
David Johnson
Timothy Joseph
Susan Kaplan (phone)
Kyle Kleinhans
James Lewis
Pete Malmquist
L.C. Manley
Karl Markiewicz, ATSDR (phone)
Donna Mosby
Bill Murray, ATSDR
Barbara Sonnenburg (phone)

Agenda

1. Chairmanship of PHAWG - K. Davidson (5 minutes)
   
2. ATSDR demonstration of Concerns Database - Paul Charp (45 min.)
   
3. Letter to Dr. Falk requesting assistance in obtaining references (interviews) in the D-R Study (10 min.)
   
4. Recommendations on ATSDR screening process for past & current exposures - K. Davidson (10 min.)
   
5. Open discussion of issues and concerns - Work Group members (15 min.)

The meeting was called to order at ~5:30 p.m., by Kowetha Davidson, Interim PHAWG Chair. Members present and on the phone introduced themselves, and were welcomed to the meeting by Kowetha.

Announcements:

Bill Pardue resigned from ORRHES right after December ORRHES Meeting. With Bill Pardue’s resignation, the chairmanship of PHAWG is now open. Kowetha will act as Interim Chair until she appoints someone to be the Chairman of PHAWG.

The suggestion was made that Kowetha consider appointing Co-Chairs of PHAWG since the workload and responsibilities of the Chair of this Work Group are enormous.

1. Demonstration of Concerns Database (Paul Charp, ATSDR)

This database has been developed by ATSDR in response to many people’s requests for a way to capture and track concerns and issues of the general public, those people participating in FACA meetings, Work Group meetings, people who telephone their concerns in, etc. During conversations in Atlanta about how to develop this database, they discovered two other groups in ATSDR were also putting together databases.

The first database Paul demonstrated was from the Federal Facilities Information Management System, which is where they store all the data points for the DOE sites. The Oak Ridge site apparently has over 1,000,000 data points (information they received from DOE as a download).

He started the demonstration. The first screen was one that showed all the different modules. He first chose the Community Health Concerns module. The opening screen is the Event List, which is the index of all events stored in the system. You can edit an existing event or add a new event. If you choose to add a new event, it gives you screens to add information. Example, on the Event Subject Line you would put an abbreviated description of what the general concern is. He added a “dummy” new event so everyone could see how the data should be entered. An event can be added, and the Contact Name be listed as “Anonymous, or John Doe, or Jane Doe” if someone does not want to give their identify. He also reminded everyone that this database is still under development, so it’s not too late to give input on additions/improvements needed.

These are examples of additional questions you can ask of an individual:

• Do you want this to be put in as “confidential” so no one knows who you are?
  
• Where do/did you live?
  
• How long have/did you live there?
  
• Has any sampling been done in your neighborhood or on your property and, if so, what were results?
  
• Questions about your vegetable garden and eating habits of other foods grown in the area.
  
• Fishing/hunting habits in relation to the affected Site.
  
• Did you work on the Site and, if so, how long and what type of work did you do?
  
• Questions about wearing clothes from work home, and laundering them at home.
  
• Are there ways you think you or someone else may have been exposed to a hazardous substance from the Site - how, when, what, where?
  
• Questions about health problems.
  
• Are there other sources of information that ATSDR should be looking at?
  
• What other concerns would you like ATSDR to examine?
  
• Questions about individual’s willingness to work with ATSDR in its community health-related efforts.
  
• How can ATSDR better interact with your community?

Bob Craig asked, “what’s under the Basic tab?” The Basic tab is where you enter the name.

There is also a section where “Follow-Up Action Needed” can be requested, another block given for a date by which the follow-up is needed, and another block indicating the date follow-up was actually completed. There is a “Conclusions, Actions, Recommendations from this Conversation” where ATSDR will indicate what they thing the person is asking for.

The programmers said about a week ago that they were developing a Sort routine where we could sort on the text in the Subject Event Line.

Bob Craig asked if that sort would be by Key Word. In response, Paul said yes, the programmers said they could sort by key word.

Paul also said that the hope is that eventually, programmers will fix it to be able to sort either on the Subject Event Line, and also on the first line of the Narrative.

One of the important things noted about this database was that you can do the search now, then later on - even years down the road - you can query that concern or see how many concerns you had regarding the same thing, and how ATSDR responded. It will be a good way of measuring how ATSDR responds to community concerns and how quickly they respond.

Bill Murray asked which blocks can be searched. Paul responded that ATSDR wants everyone to be able to search key words from Event Subject Line and the first line of the Narrative.

Bill Murray: Does this use Optical Character Recognition (OCR) techniques?

Paul Charp: No, this is a key word search.

Bill Murray: I wonder if you put in an OCR type of thing, could you search the whole Narrative?

Paul Charp: I don’t know.

Paul also said people could, of course, write their concerns on paper, then they can be input into this database.

The second database Paul demonstrated was one set up by that another group - not for community concerns, but to track activities that some of our State partners are doing. This one has a few more bells and whistles (e.g., more activity codes; it allows a larger group of people to request information such as federal, state, and local agencies, news media, Dept. of Defense, law enforcement, etc.). It also has a target audience category that they think the response may be most suited for. They may try to take some of these types of information fields and have programmers incorporate them into the Federal Information Management Information System database that Paul first demonstrated.

James Lewis expressed some concerns: People who have the same concerns may fill out the “description” block out quite differently, requiring some degree of interpretation and producing an inconsistent result when searching on key words.

Paul said that concern has been raised before. In a public meeting, hundred of concerns may be raised. The question is do you input each person’s concern individually and answer every one, or do you group similar concerns together in categories. Paul advises answering each of them individually. Even though the concerns from two people may be similar, the answers may be different depending on factors such as distance the person lives from the site.

<END OF DEMONSTRATION>

Pete Malmquist: How soon do you think this will be put into operation?

Paul Charp: Don’t know exactly how soon. The program had a few crashes during demonstration during this meeting, so there are bugs the programmers will have to fix. There will also be tweaking of the information needed for the database. Additionally, this database runs on ATSDR’s network, and the Oak Ridge ATSDR Office does not have adequate access to the network. Another problem they’re working on is if someone gives confidential medical information they do not want accessed by the public - how do programmers separate that information out from the more generic concerns as far as what is available for others to access?

Linda Gass suggested that some databases assign a code number to someone who wants to interact with the Agency on a name basis. The entire database does not have to be kept private, but only Agency staff would have access to that unique identifier.

Paul Charp acknowledged that to be a good point.

Jack Hanley: When we initiated this database, typically this information is captured by ATSDR staff in different notebooks, and we keep it to ourselves. This database helps us to compile it. At ATSDR, their thoughts were that they would keep the network containing confidential information at the Agency. Then if there’s a query from the Subcommittee (e.g., how many queries did you receive on I-131 from people who live in Bradbury), ATSDR then would search the database, summarize that data, and give sanitized summaries to the Subcommittee. Every quarter, ATSDR could also give a summary of how many comments they had received, how many on each subject, etc.

Susan Kaplan stated she does not like the idea of keeping it within the Agency. She feels they should move toward getting the information on the internet and maintaining people’s privacy.

Jack responded that maintaining the network at ATSDR is what they’ll have to do just to get the database up and running. When we get around to having Availability Sessions, we’ll sit down with people one-on-one and they’ll give us private, personal information. We just don’t put people’s private information on the internet. We’ll write it in our notebooks, but we can’t put that type of information on the internet. But we will summarize it and give a total breakdown, but there won’t be any name identifiers of any kind for anybody.

Bill Murray said ATSDR has to also be mindful that certain people can even figure out who’s information is being detailed in generic terms if there are geographic identifiers and they’re expressing particular concerns.

Jack Hanley responded that if an individual asks them to take information in confidentiality, they will flag it that way and keep it that way. Jack said that he himself would be willing to give this type of information to anyone who was going to put it on the internet. ATSDR will provide summaries.

Bill Murray: Paul, does this require OMB clearance?

Paul Charp said he does not think so.

James Lewis: Regarding a sanitized summary, he did not see a field (during the presentation) that could be used for a sanitized summary.

Peggy Atkins: How does this process relate to the information gathered by George Washington University, and the recordings made at public meetings where people came forward and expressed concerns. Is there any way to pull all of that into one cohesive package?

Jack Hanley: Regarding previous Subcommittee meetings, as time allows, I would like us to look at videos/minutes of public comment periods, document that stuff, and put it in the system.

Peggy Atkins: Even further than that, there was one meeting in Oak Ridge where Dr. Michaels was present, and there were several hundred people at the public meeting and many of them had concerns. Also, George Washington University has made phone calls, contacted a lot of people, and gotten a lot of information. Can we tie all this information in, or do we start from where we are tonight and move forward?

Jack Hanley: George Washington University is going to summarize their information. They had to go through a special review board to get approval for their activities. They cannot share details with us. They will provide sanitized version of what their findings were. Those may be appropriate for input into the Concerns Database. However, their process is separate.

James Lewis acknowledges it’s impossible to go from cradle to grave identifying every issue. However, there have been a number of agencies/programs where people have captured concerns from the past. If people on this Subcommittee identify issue from the past, could we do input that concern. Is this form going to allow that?

Jack Hanley: That’s partly the reason for the diversity of the members of the Subcommittee. ATSDR may not have been at meetings with other agencies years ago, but if concerns coming out of those meeting are brought to the table at the Subcommittee meetings in a summarized fashion, ATSDR is hoping to pick some of them up as concerns; and they’re looking to Subcommittee members to bring those outstanding concerns to them.

Linda Gass: There were meetings that involved 9 agencies. Were those records kept by ATSDR? These were public meetings at the Mall?

Jack Hanley: Yes, they were kept and we still have those, and transcripts were sent to you within the past year.

Kowetha Davidson: Individual members of the Subcommittee can also bring up specific concerns to be put into this database. Right, Jack?

Jack: Yes.

Kowetha: So, if individual Subcommittee members know of specific concerns and they don’t think they’re here (in the database), just bring them to the table (of the Subcommittee) and they can be put into the database. Paul, when going thru 1st database, I didn’t see questions like: do you have children, number of children, etc. Children are very susceptible to soil.

There was more discussion about relevant questions for children. Primarily, they came up with the following:

Do you have children?
Number of children?
Their ages?
Dates of birth?
Sex?
Where born?
How long resided there?
Birth defects?
Any health concerns?

It was stated that the same kind of information is needed for each child as for each adult.

James Lewis: If we were to take something from newspaper or in the public record and put that information and name in the database, are we violating something (privacy issue) even though in it’s in the public record? Also, he feels that most people won’t give you very detailed, specific information; they’ll give you more general issues. That’s why he’s very interested in sanitized summarizations. Maybe another set of questions should be developed for the group of people who do not feel comfortable telling specifics of their concerns.

Peggy Atkins suggested the following things that might strengthen the database:

• Word it so that it includes historic exposures as well as current. Do it by year-to-year, instead of wording it so that it looks like current.
  
• In the categories, fix it so that you would be able to check more than one category. Add the following categories: Worker, Former Worker, Current Resident, Former Resident, Children and Spouses of Workers. All those should be able to categorized by date.
  
• Probably the biggest concern I have now, and it ties in with what James just said - whereas many people are interested in the general terms, residents are very interested in the extremely specific terms. Often, doctors don’t give a “diagnosis.” All that some people can express concerns about are “symptoms.” The database should include symptoms of concern, so that commonality might be found among geographical regions, for example.

Jack Hanley: The first set of questions asked are general. Then there is a list from which we can ask more specifics about exposure issues. We do have a question, “What is your concern or illness.” “Has it been diagnosed?” If it has been diagnosed, it will be put in there. If it has not, it will still be documented, but it will be documented as not having been diagnosed by a physician, which is still good information.

Question 25 says, “When did your doctor first diagnose your condition.” Kowetha suggested that Question 25 should be reworded to say, “Has your condition been diagnosed by a physician? If so, when?”

Peggy Atkins says we should go further with that one because there are people who have bizarre symptoms who do not have a diagnosis. It was only fate that caused me to find out that my neighbors and I had similar symptoms. We need to go further and ask “What symptoms (numbness, blurred vision, loss of mobility, confusion, confusion in words) do you have, and when did those symptoms first appear,” rather than rely fully on the diagnosis of the disease.

Jack Hanley: In the electronic database, diagnoses have codes (standard codes that doctors use) - I think that’s in there but I’m not sure; however, symptoms may not be coded. That’s something we need to look into.

Peggy said she’s thinking specifically of sick people in the Dylis community - they won’t be able to tell you doctor codes, they won’t be able to tell you a disease. But they will be able to tell you that “my arm has been numb for the last 6 years, on and off.” If we’re really going to be “community-friendly,” we need to do this in a way that’s easy for simple people to make simple responses.

Kowetha suggested that on Question 24, some question like “what are your problems, and the history of these problems,” and that would capture this issue.

Peggy stated that she thinks that would make it more user-friendly for folks in local communities.

Linda Gass: I agree that the word “symptoms” needs to appear in database. There are certain databases that already use the word “symptom” (e.g., the Sediments Database).

James Lewis said he thinks it’s necessary for people who express concerns to also put, as it relates to their condition, what is it they want to be done. Jack Hanley said that’s already in the database.

<FLIPPED THE TAPE>

There was some discussion as to the level of detail needed on the database. Some think the database should be fairly simple, then if an individual has more detailed concerns, that should be captured in a more confidential manner. The Work Group and Subcommittee needs to keep in mind what type of product will be needed to serve our limited use. Very detailed concerns will come out of the Availability Sessions - helpful for ATSDR, but the Subcommittee may not want/need that level of detail. But it’s easier to program in all the fields we can imagine might be needed and delete fields later, rather than trying to try to program in new fields after the database is off the ground. Also, if there are fields that are not needed, you don’t have to fill them out. Bottom line: there will have to be some balance between the two extremes.

Pete Malmquist: Jack, let’s say Compound X was released from the site. We know Compound X was released, we know these people were exposed, and we know that exposure has caused some problems for these people. Can we go to the database and say “this is a concern of these people - Compound X has caused these effects in this community.” That’s as important as anything to this Subcommittee, because that’s what we’re going to have to make Recommendations about. What do we tell these people who we know were exposed and are having problems? Will this database capture these things?

Jack Hanley responded that the database will capture if, for example, they’re concerned about a certain chemical being released - that will be captured. Paul Charp commented that in addition to concerns, environmental sampling data will also reside in the database. In theory, you should be able to cross concerns about exposure to Chemical X with where Chemical X was found and in what concentration. Jack said that’s exactly what will be done in the Health Assessment - those types of things will appear in the Health Assessment Document. That’s where a lot of answers will come.

Peggy Atkins: James asked about product. The community would be looking from the other direction. From the outside looking in, we see the title is Health Effects Study. One of the products should be a list for doctors of what to look for - symptoms from this particular area. For example, if you (a physician) have patient from ABC area with XYZ symptom, that XYZ symptom could be related to arsenic; and here are (medical) procedures to address arsenic poisoning. When I first came to this group, I was looking for help. People in the communities expect you to give them some practical help to assist them with what’s going on in their bodies.

Jack Hanley responded that the 5 issues that Peggy laid out earlier were helpful, and they will talk to the programmers to see what they can do about them.

Kowetha Davidson: The issue regarding educations of physicians in area will come out of Health Needs Assessment, right Jack? Jack responded, “yes.”

There was some discussion on how to separate worker issues from resident issues in the database? Our focus is on off-site releases, and we need to be clear about that so that someone later does not get upset after they submit a concern related to occupational exposure, and ATSDR does not directly address this concern. There are other federal agencies (e.g., DOE, NIOSH, etc.) whose job it is to address occupational exposures. Anyone may start their inquiry with ATSDR or the Subcommittee, and occupational issues may be forwarded to the appropriate agencies for a response. However, we are the only ones willing to collect public/resident concerns; and everyone is a “resident.” There are fields in the database to identify whether worker, or resident, etc. It is important to know if the person is a worker, because workers may bring contamination home to their family. There may be many people who feel they have both occupational exposures as well as off-site exposures related to their residence. The question is: how will the Subcommittee address those cases?

Jack Hanley responded that those people with occupational exposures should be directed to NIOSH or to occupational environmental clinic. He advises not just to take their concern and let them walk away with no direction, but to direct them to another agencies who can better address their particular issues.

Peggy Atkins: Nickel poisoning to a worker looks just like nickel poisoning to a resident who lives 5 miles away from K-25. Shouldn’t there be some common place where both people can go for help?

Paul Charp: At different sites (not DOE sites) I’ve worked on, we’ve actually referred private citizens to occupational clinics (Association of Occupational Environmental Clinics - AOEC Clinics). I think that’s a possibility. You could refer workers as well as downstream residents.

Peggy: Where are these clinics?

Bill Murray: There’s one in ??Bakersville??. There’s one in Cincinnati. I don’t think there’s any here.

Paul Charp: Is there an AOEC.org?

Pete Malmquist asked Jack Hanley: Have I not heard you say that any comment made by any member of the public at any of our meetings - ATSDR must give a response to that comment. Is that not correct? Does this not clear up what we’re discussing here? Jack responded, “Yes, we must give them an answer.”

Timothy Joseph: To follow up on that, you’re going to separate worker from public. Is that not correct?

Jack Hanley: Yes.

Timothy Joseph: That's very important.

James Lewis: When you start program, he would like to see a Program Document that clearly defines how the program is going to work, what roles are, etc., before public expectations are raised.

Timothy Joseph: Your reference is specifically to public vs. worker? That’s important.

Kowetha said we need to move on. This topic (worker vs. resident) has been on the table before many times. We've discussed it when Larry Elliott (NIOSH) was here.

Timothy Joseph: James's point is that the public is not clear on it.

Kowetha Davidson: NIOSH is part of CDC.

Paul Charp: If I understand James, he wants to see a break point and define it.

Peggy Atkins: Will that give the runaround to someone really sick?

Paul Charp: When is a worker issue a public health issue?

Kowetha Davidson tabled the rest of this discussion until the end of this meeting - open discussion of issues and concerns.

2. Letter Requesting Help of Dr. Falk in Pursuing Interviews

A draft letter was prepared and read by Linda Gass. Some additional information was needed before a final could be prepared. The wording needed to be change a little as if it were Dr. Falk writing the letter (since it will be signed by him). Kowetha and Linda will work together and have this draft and cover letter ready before the next PHAWG meeting (January 22). There was a little discussion about whether only the interviews should be requested, or interviews + documents + document references.

3. Next Meeting of PHAWG: Tuesday, January 22, 2002 (because Monday is a holiday)

4. Recommendations on ATSDR Screening Process for Past and Current Exposures

Kowetha needs recommendations from the Work Group ready for the next Subcommittee meeting either adopting or not adopting the screening processes. Someone needs to work on that have it for next meeting. Also need to adopt (or not) the flow charts. There was some concern by members of PHAWG that they were not asked to give their input as to whether these should be adopted or not. Linda Gass expressed her concern about the validity of the data. She feels ATSDR’s processes are just another iteration of what the State of Tennessee did previously. Others said this is simply validating the PROCESS. Another separate effort can be launched in the future to verify and validate the data; however, the data is (for all practical purposes) unavailable because permission to review the data has been denied in the past. The people who will work to draft these recommendations are as follows: Linda Gass, L.C. Manley, James Lewis, Bob Craig, Timothy Joseph. They will decide among themselves when to meet.

5. New PHAWG Chairperson

Kowetha will continue to serve as Interim Chair of PHAWG until she appoints a new Chair or Co-Chairs.

The meeting was adjourned at 7:40 p.m.