Room 705-A
Hubert H. Humphrey Building
200
Independence Avenue, SW
Washington, DC
Report on the Status of HIPAA Implementation
Update from the Workgroup on the Computer-based Patient Records
Mechanisms for Collection of Data on Race and Ethnicity in the Context of HIPAA Standards
DR. LUMPKIN: I think we will try to move through our order of work here. The first item is a report on the update on HIPAA. I see we have three --
MR. SCANLON: Bill, why don't you and Judy report on the standards, and I'll report, however briefly.
DR. BRAITHWAITE: Karen Trudel sends her regrets. She is working with the Infrastructure Team that is working on discussing and trying to resolve some of the issue papers that we are writing and bringing forward as a means of writing up the final rules in response to the comments that we got on the four proposed rules that we put out last year.
The ones for transactions and code sets, the provider identifier, the employer identifier, and the security standards. So, those are underway. We are reviewing and analyzing the contents and drafting the final rules.
We are expecting at this point that the first final rule will be ready to start the clearance process in probably March or April of this year.
The clearance process is something that is not very predictable, so we don't know when it is going to actually get out and get published, but probably the latter part of the year.
The plan identifier was supposed to come out last year, but is still in the clearance process. There were some problems with it, but we are in the process of redrafting that, and we will run it through an expedited clearance in the near further.
The attachment standard has been drafted and is starting the review and clearance process.
DR. LUMPKIN: What's expedited clearance?
DR. BRAITHWAITE: It means that, since the rule has already gone through a lot of the various people who have to clear it, that showing them the changes that were made means they don't have to read the 300 pages all over again, so they can do it more rapidly.
DR. LUMPKIN: Okay. Seven weeks instead of eight weeks.
DR. BRAITHWAITE: So, the plan identifier and attachments standard, proposed rules, I expect to be ready for clearance, again, in the March-April timeframe, and probably, the third quarter, we will have them published for comment.
The first report of injury standard has not yet been drafted. I understand that the industry that deals with that transaction is either voting very soon, or has just voted on a new consensus standard, and if that is in fact approved and presented to us, we will come up with a proposed rule for adopting that one rather quickly.
The last standard is the unique identifier, for individuals, which as you know, has been put on hold by the Administration, when Vice President Gore last July said that we won't implement such an identifier until appropriate privacy protections are in place for individuals. And then in October, Congress passed a budget bill which did not allow us to use any money for promulgating or adopting a final standard for a unique identifier for individuals.
Until Congress approves of the standard, and everyone believes that that cannot happen until the privacy laws and regulation debate that is about to begin in Congress has been resolved. So we cannot predict what is going to happen with that one.
MS. FRAWLEY: Bill, for some reason I can't hear, and I don't know if there's a problem with the mikes or something, but about half of what you're saying is kind of, we're missing, so -- I don't know what's going on, I just because --
DR. BRAITHWAITE: I can hear her.
MS. FRAWLEY: Yes, but I can't hear Bill, and I don't know why I'm like missing half of -- because I'm going to ask you something and you're going to say, why weren't you listening, and I was.
DR. BRAITHWAITE: Well, I'm here. Go ahead and ask.
MS. FRAWLEY: Okay, good. Payer I.D., you just said is where in the process?
DR. BRAITHWAITE: The plan identifier, which was labeled payer I.D. at some point was drafted and went through the clearance process, and during that, some problems came up and it has gone back for redrafting.
MS. FRAWLEY: Okay. And what is the expected timeline?
DR. BRAITHWAITE: The expected timeline is, ready for clearance some time in the March-April timeframe.
MS. FRAWLEY: Okay. And then, claims attachment.
DR. BRAITHWAITE: The claims attachment is the same timeframe. It is --
MS. FRAWLEY: Okay. I just wanted to make sure I was hearing -- and you also said the final rule -- the final rules on the first four NPRMs, should be ready to start the clearance process April of 1999, but then how long it will take to go through the departmental process, is unknown. And we could hope that by the end of 1999, we could have some final rules.
I don't want to put words in your mouth, I just want to make sure I am hearing -- for some reason, I don't know why I can't hear.
DR. BRAITHWAITE: It must be what you ate last night.
MS. FRAWLEY: No, it's just that, for some reason, I cannot --
DR. LUMPKIN: I think it's the low frequency range.
DR. BRAITHWAITE: Yes, that's what I said.
MS. FRAWLEY: Yes, I mean, I don't know why. I usually can hear Bill fine. I don't know why I can't hear.
MS. FYFFE: Excuse me. The information you are giving us now is consistent and really the same as reported yesterday.
DR. BRAITHWAITE: It is identical to what was reported yesterday.
MS. FRAWLEY: I just wanted to make sure --
MS. FYFFE: Thank you. I took notes. Thanks.
DR. LUMPKIN: It's consistent with what is in the annual report, as well. I think --
MS. FRAWLEY: Okay. That's all I wanted, to make sure we weren't hearing something different for the first time this morning.
DR. BRAITHWAITE: Yes. Yes.
MS. FRAWLEY: Thank you. I'm sorry to be a --
MS. FYFFE: I had a hard time hearing, too, it's very low.
MR. SCANLON: I think it's a low frequency.
DR. LUMPKIN: I think he may be correct. Angiano has moved them down a couple of octaves.
MS. FRAWLEY: It was all that singing he was doing. (Simultaneous discussion and laughter.)
DR. LUMPKIN: Anything else, Bill?
DR. BRAITHWAITE: I don't have anything else. Judy, do you have anything to add?
DR. LUMPKIN: I neglected to do introductions.
DR. BRAITHWAITE: So we should do that.
DR. LUMPKIN: So we should do that, so those who may be listening over the microphones and elsewhere can understand. I'm John Lumpkin. I'm chairing the work group. I'm a member of the Committee.
DR. MCDONALD: I'm Clem McDonald from Indiana University.
MS. BALL: I'm Judy Ball from HHS and staff to the Subcommittee.
DR. BRAITHWAITE: Bill Braithwaite from HHS, staff to the Committee.
MS. FYFFE: Kathleen Fyffe, Health Insurance Association of America, member of the Committee.
DR. COHN: Simon Cohn, Kaiser Permanente, member of the Committee.
MR. BLAIR: Jeff Blair, MRI, member of the Committee.
MS. FRAWLEY: Kathleen Frawley, the American Health Information Management Association, member of the Committee.
MS. GREENBERG: Marjorie Greenberg, NCHS, CDC, and Executive Secretary to the Committee.
MR. SCANLON: Jim Scanlon, HHS, ASPE, Executive Staff Director to the Committee.
DR. DETMER: And Don Detmer, Chairman of the Committee.
MR. MEYER: Chuck Meyer (Away from microphone.)
DR. BEATTY: Michael Beatty, American Medical Association.
DR. SENTLY: John Sently, American Medical Association.
PARTICIPANT: (Away from microphone.)
PARTICIPANT: (Away from microphone.)
PARTICIPANT: (Away from microphone.)
MS. FRAWLEY: We can't hear. I couldn't hear.
MS. VILLA: Linda Villa, Consumer Product Commission.
MR. SCANLON: I will give a short report, a status report on privacy, it will be fairly short. You recall that originally in HIPAA there was a two-step process outlined for achieving privacy and confidentiality protections for the information described in the Act, more broadly.
The first step was for the Secretary to submit recommendations for health record privacy, and she did so, very, very detailed and comprehensive recommendations in September of 1997.
The Congress then gave itself a deadline of August of 1999, in which it would enact, hopefully enact, health record privacy legislation. In the 105th Congress, there were probably half a dozen bills introduced, some in the Senate, some in the House, unfortunately, nothing was enacted, and I think it's expected in the 106th Congress, there will be similar attention, and probably several bills introduced, but nothing as I know of now, Kathleen.
MS. FRAWLEY: Can I just give you the latest update?
MR. SCANLON: Yes, sure. Yes.
MS. FRAWLEY: Because it's like it keeps changing. Because I don't think that John is even aware of this. Senator Jefferts announced last week that he was getting ready to reintroduce his bill, and would start holding hearings.
And so, the very first hearing is scheduled for February 25th. It was announced on either Monday or Tuesday; I forget what day we are up to, but either, sometime this week, so I think it was Monday or Tuesday, it was announced.
The hearing is scheduled for February 25th at 9:30 a.m. in Dirkson, and if you remember in the Jefferts bill last year, the bill directed the GAO to do a study on the whole issue of health services research, and the utility of the IRB process, because one of the debates; there's there debate issues that we have not resolved, which is health services research, IRB, public health, and preemption.
And so, the GAO last June, out of the blue, called me, and asked me to come meet with them, and explain to me what they were doing. So, their timeline was to finish their report November-December.
My understanding is, they are finishing the report, and that the very first time we will see the report or hear it, is at 9:30 on February 25th, but it is supposed to answer the question, should every research activity in this Country be run through an IRB, or should we get patient consent?
The second thing that has happened in the last 48 to 72 hours, is that Jan Lori Goldman and James Hodge of the Georgetown University Law Center, have announced that they have drafted their model legislative language, on access to health information for public health officials, and will make it available February 9th.
Now, John, I am just going to tell you this. I don't know all your little groups, but apparently, ASTO and two other groups, one is the Council blah-blah-blah-blah, and some other surveillance --
MS. FYFFE: Council to State and Territorial Epidemiology?
MS. FRAWLEY: Right. ASTO, the Council, and who's the third group, which is --
DR. LUMPKIN: NATCHO --
MS. FRAWLEY: NATCHO, thank you.
DR. LUMPKIN: Or NAFUS?
MS. FRAWLEY: Apparently, 37 members sat down with Jan Lori and James Hodge and drafted this. And I have no idea if anybody within the Department knew this was going on. This was all news to me when I found this out on Tuesday morning.
And apparently, that language is going to be released February 9th, next week, and apparently, the public health people think this is a great idea. I have no idea what they agreed to, okay. I am just telling you --
MR. SCANLON: They know what they agreed to.
MS. FRAWLEY: Correct. Or what they think they agreed to, is what is going to be in the paper, or the piece of language, so those are the two most recent developments in the last 48 hours, and the third issue, which is still the one that is the deal-breaker, is preemption, which I don't think we are ever going to solve. I just don't know how we're going to fix that one.
But Jefferts' staff has told me, point blank, that they're fixing it and resolving it this year. So, I don't know if we believe Congress or not, but they said they really want to get a bill through the Congress.
And I don't know what Senator Bennett's planning on doing, because Chip is not talking about that now with the impeachment trial, though I do know that Thomas over in the House, is interested in doing something again in the patient protection language, and Congressman Horne has indicated that he wants to start holding some hearings.
That's all the latest news since Monday morning, up until last night, that I know of.
MS. FYFFE: Kathleen, could you please repeat the three areas that you say --
MS. FRAWLEY: The three areas are health services research, and whether every research activity in the United States needs to be going through an IRB process, or requires patient authorization, before a researcher can look at someone's medical record.
And the problem that we have is there is no consensus on what the term, research, is. Some people throw in quality assurance, credentialling, peer review, and a whole host of other things, and then we keep trying to explain to them that health services research and biomedical research, and all these things that we are required to do by state law, because the state licenses the healthcare provider, and the healthcare organization, and then what either the Joint Commission requires, or NCQA, or other joint -- or HCFA through the conditions of participation, is not what we define as health services research. We are trying to establish, this is this, this is this, this is this.
The second piece is the whole issue of -- and this is the privacy community saying that, I don't think John Lumpkin should know that I'm HIV-positive, or that I have TB, or I have communicable diseases, and I don't think the Center for Disease Control has any rights, either.
MS. FYFFE: So, is this the public health portion?
MS. FRAWLEY: Right. Apparently, the public health people signed on to working with some of the folks in the privacy community, and I just am telling people, I don't know what they agreed to. I have no idea.
DR. LUMPKIN: Well, I can guarantee at what they wouldn't agree to.
MS. FRAWLEY: Okay. And then the third piece is the preemption issue, which goes back to the whole issue, which we have struggled with in our report to the Secretary, which is, do certain sensitive health conditions require a carve-out?
And one of the things that we started talking to the Congressional staff about, which actually, Senator Furst and his staff kind of liked the idea when we started this dialogue a couple of weeks ago, is you know, we go federal preemption, and let the states do their thing. States can enact higher laws.
There's like three different variations on a theme. And one of the things that I said, which actually, Senator Furst and his staff thought was an interesting thought process was, if we say that mental health, genetics, sexually-transmitted, abortion, you name it, needs to be protected differently, if you accept that premise.
I said, maybe we should just have a national carve-out standard. So, instead of having 15 mental health statutes, if the mental health community would say, this is our standard; you know, and if the AIDS community said, this is our standard, we wouldn't have 50 variations on a theme. Or the genetics community would say, this is our standard.
We never thought about that in the last five years, and I don't know why all of a sudden the light flicked in on that issue. So, I am just throwing that out, that that seems to be a new dialogue. But we cannot --
When I tell you that the privacy community is over here, and everybody else is over here, and the Great Divide will never be crossed, and that's after seven years of trying to work this issue, I am serious.
When people say to me, well, why don't you go talk to these people? I am like, there is no more talking, and Don has been to enough meetings with me that I think that, you know, unless I'm misrepresenting something, we're --
DR. DETMER: Well, I think there' plenty of talking, it's just that, I don't think you really -- Essentially, a democracy comes to a vote on such things, and that's the way our system is built, and it may mean that we change public health. It may mean that we change mental health, or it may mean that we don't.
At some level, I think that's why our system is structured the way it is, it isn't is though well-meaning people all agree on things.
DR. COHN: Well, without trying to solve all the problems of privacy and confidentiality this morning, which might be a big task, it sounds like the GAO Report may be particularly useful to the Committee and Subcommittee, and I actually was hoping that perhaps we could, once a copy is -- once a copy is released, that maybe we could have one distributed to Committee member, and we could review it.
And I guess I'm hearing something slightly different from Kathleen. I mean, in my own mind and what I have reviewed as privacy and confidentiality issues, I have not necessarily thought that the research issues were perhaps the critical --
I mean, they were critical, but I see there is a lot of issue around what is internal research, quality assurance, performance measurement, versus research and external research. And I think that is a vexing problem for everyone. And I am wondering whether this report might shed some light about what they at least propose as definitions, the difference.
DR. LUMPKIN: We actually don't have on our Agenda this discussion.
MS. FRAWLEY: No, no, I just wanted to let you know that --
DR. COHN: Okay.
DR. LUMPKIN: And we only have a little bit over an hour to accomplish some tasks that are on the Agenda, so unless there is some real pressing issues on this. Jeff?
MR. BLAIR: With the way the HIPAA law was written, it wound up indicating that if Congress passed a privacy and confidentiality bill by August of this year, then we would all wind up accepting that, and if that bill was not passed, then the Department of Health and Human Services would promulgate regulations by February of 2000.
That is assuming monolithic blocks. Are we in a situation where we may wind up having fragmented legislation passed, and not comprehensive legislation passed, by August? That the fragmented legislation does not address key areas of privacy and confidentiality.
Like a Jefferts bill, for example. And where there may be argument made as to whether or not that is, that has met the HIPAA law. Is that exposure there?
DR. LUMPKIN: Well, that's more than likely. I mean you can never count on Congress to do something that you want, in the way you want it.
MR. BLAIR: But my understanding is that, like the Bennett bill is something we would consider comprehensive.
MS. FRAWLEY: We have to do a time out here because we're not doing privacy and confidentiality.
DR. LUMPKIN: Right, we're not --
MS. FRAWLEY: This is the Standards and Security Subcommittee.
MR. BLAIR: Okay, well I will leave it to another -- I'm sorry.
MS. FRAWLEY: I'll talk to you, Jeff, later offline about it.
DR. LUMPKIN: But again, I don't think we can predict what Congress will do, and any bill that goes in is not going to look that way coming out. So, that analysis will have to happen after Congress acts. It is going to be very difficult to prejudge.
Just a clarification on the research. I think there is really a triplet. We've got the internal, and I think that's typically been defined in law --
I just want to make sure when you're discussing this, there's the marketing research side, which is -- because we do have a whole other committee --
MS. FRAWLEY: Right. Just so everybody knows, we're the Subcommittee on Standards and Security, not Privacy and Confidentiality. It's the same players, but unfortunately, we just changed the name of the meeting.
DR. LUMPKIN: Right. And then we have different tasks that we are trying to accomplish. Okay. We are not going to have any more privacy updates.
MS. FRAWLEY: If you want one, you have to come to the Subcommittee on Privacy and Confidentiality.
DR. LUMPKIN: Any other questions on the updates? Thank you. Needless to say, this is always an issue that sparks controversy.
Draft report on HIPAA. I did want to -- the subcommittee from yesterday that was the working committee that was assigned this task, came up with a change in the legislation, or the -- page 26 on the unique identifier -- which is entitled, "Linkage of the Individual Identifier to Privacy Protections."
The current document reads, "In 1997, the Committee recommended that the selection of a unique identifier for individuals be delayed until passage of legislation assured the confidentiality of individual identifiable health information. And to protect an individual's right to privacy."
The paragraph then goes on to document our position on that. The issue was raised that this document does not note that we were supportive of a unique identifier, and in fact, had identified a identifier, unique.
And so, I would suggest that we would put in a leading clause into that, that would read, "Although the Committee identified the needs and benefits of a unique health identifier, in 1997, the Committee then recommended that." It would just be an introductory clause that would note that we were in favor of a unique identifier.
MR. BLAIR: Actually, that was done in 1996, wasn't it? The previous language he read to us? I thought it was August of 1996 when HIPAA Law came out.
DR. LUMPKIN: No, because --
MS. FRAWLEY: Not, that was --
DR. LUMPKIN: It was after the Committee was reconstituted.
MR. BLAIR: Which was in September of 1996.
MS. GREENBERG: I think it was September of 1997.
DR. LUMPKIN: The document -- well. Well, no actually, because in 1997, refers to when the Committee recommended that we go slow in the unique identifier, because of privacy. That's what the 1997 record was.
MR. BLAIR: It was in June of 1997.
MS. GREENBERG: Right.
DR. LUMPKIN: So, something to that effect, but it would have to be grammatically written into that.
MS. GREENBERG: Although, I think I would support Bob's position that -- Bob Gellman's position that, well, if the report says that, which in fact is, you know, supported by the record, it is probably appropriate to say that something, you know, with two dissenting votes. I mean, it was not unanimous, and I think that that probably should be reflected.
DR. LUMPKIN: Well, I think, certainly that there were disagreements. I don't think that we should get into the business of reporting every single action that we did was either unanimous or not unanimous, or with votes or without votes.
Our records clearly state that. Anyone who chooses to do that, may look at it. I think that's a different context than saying -- and I think he is right, even though I don't agree with the issue of his position of a unique identifier. That we almost say, well, we were just kind of bystanders.
We're not. We think unique identifier, as a committee, is a good idea, as long as it's appropriately implemented.
DR. DETMER: Correct me if I am wrong. I think that HIPAA mandates by law, says that the Secretary was to recommend identifiers for payers, providers, and personal identifiers, on a state given to us, and they were supposed to pay attention to the advice of the national committee.
So, to me, we were simply following the law, to actually look at this issue. But if I'm on a different issue --
DR. LUMPKIN: No, no, I -- that is true, but the Committee, before it was reconstituted, as part of the minimum data set, took the position --
DR. DETMER: Yes, right.
DR. LUMPKIN: -- in support of unique identifier.
DR. DETMER: Okay, I'm sorry. I was thinking you were talking about --
MS. FRAWLEY: Okay, because I think that's what -- I have to say that one of the things we have to listen very carefully to each other, because otherwise we are not going to finish our Agenda.
There's two concerns. One is, what happened in the old committee, core data set, HIPAA, and then what the new committee decided to do. And I think that, somehow we have got to reflect here's the old recommendation. Here's HIPAA. Here's new.
I agree with John, that I don't think the report has to mention for every activity, what the vote count was. You can go back to our Web site and figure that one out. But I think the problem that we have, because we don't listen to each other very carefully, and I really have to applaud --
Today, we have to listen very carefully to each other, because I don't think people are listening. The challenge for us today is that we have to make sure that everybody understands what we are talking about, because we are all over the page, without listening to each other.
So, those -- I think if we do that, but Bob still has his other issues, which is a whole separate. We are not going to resolve all his issues, so I just --
DR. LUMPKIN: And as eh told me, he made his statement. He did not expect us to correct all of his issues. But I do believe that, it is appropriate for us to say that we have a position,.
The issue was raised, and that's the vote that he talked about, of rescinding our prior position. The Committee voted with -- not unanimously, but voted in the majority, to preserver our prior position in support of unique identifier, and so I think it would be appropriate in this thing to say, while we were supportive of that, we recognized the privacy concerned, and we recommended going slow.
MS. FRAWLEY: And I think that is very appropriate. I mean, I think that is the approach we have to take. I mean, I think that that's the fix. I'm just letting everybody know that that will not resolve the concerns that were expressed yesterday.
DR. LUMPKIN: Umhm.
MS. FYFFE: Oh, no.
MS. FRAWLEY: Okay? So, just so we all understand what we are talking about, and everyone is paying attention at this point.
DR. LUMPKIN: Other comments on the document?
DR. COHN: I think there were a number of other issues or at least little areas identified yesterday, have they already been changed?
MS. FRAWLEY: The second one is on page 27.
DR. COHN: Okay, I --
MS. FRAWLEY: Which, I don't have the document. Everybody's telling me, run to the Web site. Well, I don't have a computer on top of me, but the section of Security is incorrect.
Our letter to the Secretary does not say some of these things, so I don't know who wrote this section, but the fix is, if somebody could just get me a copy of the letter to the Secretary, I can fix it this morning
All I want to do is paraphrase what we told the Secretary. Because some of these things are representations that were not in our letter to the Secretary, and I don't know where they came from.
MR. SCANLON: Yes, I thought these were taken right from the letter, but --
MS. FRAWLEY: They're not. I wrote the letter.
MR. SCANLON: -- or paraphrased from the Annual Report, though they may have -- I mean, the other report.
MS. GREENBERG: We can pull the letter off the Web site.
MS. FRAWLEY: If somebody could just give me a copy of the letter. I don't know how that happens, if somebody could go downstairs and get it and bring it back to me.
DR. LUMPKIN: Yes, we'll do that for you.
DR. COHN: Would we have a copy of the modified report to be able to approve later on today, or are we going to be wordsmithing at the Committee level --
MR. SCANLON: Well, I would suggest, you may want to think about approving the document with wording, with editing to be worked out, or we could e-mail it to you. I don't think we could turn it around by this afternoon, the full report.
MS. FRAWLEY: Why can't we?
MR. SCANLON: I mean if you think -- you either resolve the issues in a way that is satisfactory to everyone, and then, you know, we could circulate it one more time, with the understanding that you are basically granting concept approval.
Or, you may want to look at the whole thing again, in which case, we won't vote on it today.
DR. MCDONALD: We shouldn't be writing it here in Committee.
MR. SCANLON: No. No.
MS. FRAWLEY: Right. Exactly.
MR. SCANLON: And to be honest, most of the, other than this issue, which if it can get resolved by the full Committee, and revising the security language, the rest were largely editorial.
DR. LUMPKIN: And that actually is an editorial change, I would think. Just saying that that's what our position is.
MS. GREENBERG: Okay, I just want to clarify then that this subcommittee is comfortable with not indicating in the report that it was a majority that supported the unique identifier, but that this was not a unanimous view.
DR. MCDONALD: Technically, there were two dissenting votes.
DR. LUMPKIN: Well, is, I mean, if you look at the reports, and you look at any report of any committee I have ever been on, other than the minutes, the reports never mention how the vote was.
MS. GREENBERG: Well, I wouldn't put in the actual vote.
DR. LUMPKIN: But they never mention that it wasn't unanimous, or it was unanimous. That's the function of the minutes. So, unless the Committee feels differently --
MS. GREENBERG: It's just such a, obviously, an issue in which there is such divergence of --
MS. FYFFE: Well, what are our options here? I mean, do we want to treat this particular section any different than other sections, or does Bob have the opportunity to add a letter? I mean --
DR. LUMPKIN: He has the opportunity to add a letter, but let me sort of ask the question, if I --
MS. FRAWLEY: Okay, listen.
DR. LUMPKIN: -- because it was raised, but I haven't heard from the Committee, anyone who has proposing that we change it differently. Is there someone who would suggest that we would, in the body of this particular report, the Report to Congress, say that the Committee's vote was not unanimous?
DR. MCDONALD: Someone did. I heard that this morning.
MS. FYFFE: Do we do that for other -- have we done that for other things?
MS. FRAWLEY: No.
DR. LUMPKIN: Not to my memory.
MS. FRAWLEY: We are all in agreement with you, okay?
DR. LUMPKIN: Okay.
MS. FRAWLEY: But I just want to make sure everybody is listening, because for some reason, we have too much distraction going on here. I know staff is trying to do some other stuff, but it is getting very distracting, and the hearing, I don't know what's going on in terms of the acoustics. We keep losing stuff.
So, that's why I keep saying, like, you know, I don't know what's going on in terms of whatever. But I just want to make sure we all understand what we are agreeing to, because then later today, someone is going to say, I didn't think that's what we were talking about. So that, I just want to make sure we are comfortable in terms of, everybody understands what we are voting and agreeing to.
DR. LUMPKIN: Now, my understanding of -- Jeff?
MR. BLAIR: Yes, I think that Kathleen's suggestion of having the three points in the beginning, would be very helpful, because the purpose of that, at least in my mind, is it begins to clarify what positions we took at different timeframes?
Specifically, that there was a position taken before HIPAA, and that that position wound up indicating additional study. It was an interim position of support for Social Security, but that word, interim, needs to be in there.
And that when, HIPAA came in place, and we had a requirement to then study the issue of identifiers, that we began to pursue that, and that we never came to a conclusion on that, and in fact, the issue is deferred until privacy and confidentiality legislation is in place.
I think if that three-step scenario is in place, that answers a lot of questions, and Kathleen, I think that's what you were saying.
MS. FRAWLEY: Right. The only other question, I want to make sure that we all are -- because I think John keeps asking us, and we just want to make sure that we all are hearing the right thing from all of you, before we get into the full Committee, is that we all agree that we are not making a change to the report in this section, to reflect that there was a dissenting vote. Or that it was unanimous or not unanimous, or whatever.
We want to make sure that everybody here -- I mean, I'm at the point where I'm going to ask you to go around --
DR. LUMPKIN: We hear it. We hear it. I have an opportunity to people --
MS. FRAWLEY: Right. I just want to make sure that everybody hear votes, and if we have to go around on their mikes, and make sure you know what you're voting to. So that when we get into the full Committee, we are not revisiting this.
DR. LUMPKIN: Well, let me see if I can summarize the changes that I understand have been raised in the document, and then we can take a vote to move the document forward.
What I heard was, from yesterday, the discussion on page two to add in the Y2K issue.
MS. GREENBERG: You're talking about the HIPAA report.
DR. LUMPKIN: Yes, that is correct. It's the only one that is on our Agenda. Then, on page 26, now there are two portions of the report that deal with unique health identifier, in the Executive Summary.
MR. SCANLON: Yes, 3 and 26.
DR. LUMPKIN: Well -- there is a -- okay. And on 26, it talks about the linkage to individual identifier to privacy protections. So it's a specific section, it talks about unique identifier.
There's another section which I can't seem to find, which just specifically talks about the unique identifier and summarizes the actions of HHS.
It doesn't mention a position of the Committee. It just says, HHS did this, this, and that. And it's on hold.
In this section, it talks about the linkage and it goes in and discusses the fact that the Committee recommended delaying the unique identifier, because of privacy concerns.
And that's the section that we are suggesting that there be some introductory language, referring to the Committee's position, in favor of the unique identifier.
MS. GREENBERG: The section on 26, or on page 3?
DR. LUMPKIN: Page 26. Because the section on page 3 only mentions NCVHS as conducting hearings. It does not talk about the position at NCVHS, anywhere on the unique identifier.
MS. GREENBERG: Right.
DR. LUMPKIN: Our position is discussed on page 26, so when we talk about our position, we will introductory with the fact that we are supportive of the unique identifier.
And then on page 27, we will buff up the security language, to reflect more closely what we put in our letter of transmittal to the Secretary.
Those are the three changes.
MS. GREENBERG: I have a fourth that I mentioned yesterday. Just a short paragraph wherever it fits in about the Committee support of the HIPAA workshop, on Public Health and Health Services Research, and an activity that took place.
DR. LUMPKIN: Okay. But what does that -- okay, that we did support it.
MS. GREENBERG: Right.
DR. LUMPKIN: And that would go somewhere in the activity section --
MR. SCANLON: Into the NCVHS hearings and --
DR. LUMPKIN: Right.
MR. SCANLON: And with the hearings and the other recommendations. And you'll provide --
DR. LUMPKIN: And that would go before the section on the NCVHS comments on page 20, where we have a listing of various activities and hearings that were taking place that would be appropriately placed in that section.
DR. MCDONALD: I would like to move that we accept this report with the proposed changes, but with the provision that if be circulated in the final form for a double -- you know, for a double check.
MR. SCANLON: One last look.
DR. LUMPKIN: So moved. Is there a second?
DR. COHN: Second.
DR. LUMPKIN: It's been moved and seconded. Further discussion?
(No response.)
All those in favor, signify by saying, aye?
(Chorus of ayes.)
Opposed?
DR. STARFIELD: Can I ask a question? Does that mean, circulated within the Subcommittee, or in the whole Committee?
DR. LUMPKIN: Well, we're going to give it to the whole Committee to sign off, so we'll circulate it to the whole Committee.
DR. DETMER: I guess, just a question, what happens then if somebody doesn't agree? Does it go to June, or what? That's all I'm concerned about. If you don't have a way of adjudicating --
DR. LUMPKIN: Well, I think there are two options. One is to delegate the final sing-off on the comments; in other words, to review the comments to see if they are worthy of change, to either the Chair, or to the Executive Committee.
DR. DETMER: Well, I think it probably would be --
DR. MCDONALD: Why don't we delegate to the Executive -- amend my motion to have the Executive Committee adjudicate the comments?
DR. LUMPKIN: Okay. Do we have to revote on that?
DR. DETMER: Yes.
DR. LUMPKIN: We'll take a vote. The motion then, is to make the modifications, which will be circulated to the full Committee, and the Executive Committee will be charged with adjudicating the modifications.
DR. COHN: Second.
DR. LUMPKIN: It's been moved and second. All those in favor say, aye?
(Chorus of ayes.)
Opposed?
(No response.)
Abstentions?
(No response.)
It's unanimous.
(Whereupon, the motion was passed unanimously by a voice vote.)
My suggestion would be is that similar wording would be added to the document, although that's not on our Agenda, for the draft report.
MR. SCANLON: John, in fact, I may be remembering incorrectly, Marjorie, the language on the security section in the Annual HIPAA Report may have been drawn from the accomplishments report, so we'll have to make them both consistent.
MS. GREENBERG: Sure.
MR. SCANLON: With whatever they're --
MS. FRAWLEY: I will personally also mention it, because I just think that we have to make that commitment, because you know, Susan was at -- I mean, I worked with Susan, so I'm not quite sure how we had a disconnect somewhere. We will fix the problem.
MR. SCANLON: No, no. We will. And we'll make them both --
MS. GREENBERG: Not a problem. There is not reason to go beyond the letter.
MS. FRAWLEY: Right.
MS. GREENBERG: I don't know if this one does.
DR. LUMPKIN: I think we're secure in that approach.
MS. FRAWLEY: We are, we're very secure.
MR. SCANLON: And confident.
DR. LUMPKIN: No, no, no. Just secure. Let's not cross the committee lines. Okay.
MS. FRAWLEY: Don't be cryptic, though.
DR. LUMPKIN: Do we need an update on the Work Group on Computer-Based Patient Records, since our membership is the same, exactly the same?
DR. COHN: I think the only thing I would want to update would be just to reaffirm the dates of our hearings, in March and May. And the March hearings are the 29th and 30th of March, and then we'll having May hearings on the 17th and 18th of May.
MS. FRAWLEY: And those dates are now definitely firm for May?
DR. COHN: Yes.
MS. FRAWLEY: As of 8:55 a.m. today.
DR. COHN: Yes. As firm as --
MS. FRAWLEY: Thank you.
DR. COHN: Yes.
DR. LUMPKIN: Okay. The next item on the Agenda is an issue that we received from the Executive Committee, and we share with the Committee on Populations, since they have gotten back involved in this issue. And it has to do with demographic issues related to race and ethnicity, in the context of the HIPAA standards.
There has been a fair bit of discussion about this, and particularly in relationship to the comments that were received.
Basically, the comments, there were numerous comments that were received concerning the use of the A37 and A34, for demographic information, with many of the comments suggesting, from the industry side and the provider side, that this information is not really -- there's no business purpose for including it on the A37 transaction, the billing transaction. And that the enrollment transaction, A34, is perhaps a more appropriate place to put that.
Others argued that the A34 is not really a good document, because employers generally don't have access to that information, and then those who want to see it on the A37, from the health researcher side and the state data organizations, were concerned that they never see the A34, since there is generally no requirement to supply that, and particularly, the ERISA-covered companies, or excluded companies under ERISA, are not required to have A34s.
So, the issue becomes what would be our recommendations as a Committee, so that adequate information can be collected about race and ethnicity, which to my mind is sort of a dual-edged sword.
Where do we want this to be, and where do we want it not to show up? Our concerns are is that, the healthcare system, and there has been clearly a large body of evidence that has demonstrated that race and ethnicity, as well as socioeconomics, that is a determinant in many ways of access to healthcare. And sometimes, race and ethnicity, despite socioeconomic status.
A coronary bypass graft, other kinds of surgery have been documented to be less accessible, regardless of socioeconomic status for certain racial and ethnic minorities.
How do you do that research, if you don't know what the race and ethnicity of the person who you are trying to do the research on?
The counterpoint is, is that if we have a system that we're concerned about discrimination, would not the documentation on race and ethnicity perhaps lend itself to enhance the discrimination, because it's harder to discriminate if you don't know.
Obviously, this is a somewhat difficult discussion, but one which I think would be appropriate for us as a Committee to come out with a position on, and so we're kind of opening this out, although I think it probably is an issue that ought to best be dealt with by the two committees, jointly, but certainly, one which we should address.
DR. MCDONALD: There is a document dated January 29th, that's the current discussion document on this, in the -- which would really be very useful to have in front of you.
The problem, even though I have been in this discussion, and I still have is, I don't who is for what side of what, in which context. I kind of get the sense, that the comments were -- the way it was described is, the comments were sort of overwhelmingly against it, except that we don't have counts. But there were six very favorable comments for it.
I think the big issue about the negative commentors, they don't the bill, or even maybe the enrollment, to be the mechanism for collecting additional research data. And I think that's probably the underlying sort of hemic thing.
I think one of the things, if we could clearly delineate what the boundaries are with this, we may have less opposition, it might work easier. So, that's one sort of issue.
The last document, I am going to try to make sure there's words in that for the discussion this Thursday, that would say, this is all we're talking about. We're not taking about any future extensions; we're not talking about growth into a whole research document, because they are really terrified of that, the business side of it.
But the thing we have to be a little cautious about is that, even at best, all we can say is it would be allowed to be put in here, I think. Which doesn't sound too severe.
And the problem, in terms of reality is, in our own hospital, we have been analyzing this, we can't get our clerks to record it. I mean it's not well-recorded, and the second part is, the specific list in this discussion document gives the current X12 code lists for two fields; the race and ethnicity and marital status, both of which are of interest, and reasonable.
But their code list is kind of funny. It's not mutually-exclusive. They've got black and they've got white, and then they have Spanish non-Black, but they don't have Spanish Black. And then the marriage one is even a little bit worse. They've got single people and they've got single never married, and single and -- I mean, so --
But we can't touch that, so it's a little further tangled.
DR. LUMPKIN: Now, let me perhaps clarify that the document you are referring to is not a Committee document --
DR. MCDONALD: It's not a Committee document.
DR. LUMPKIN: It's an HHS document, so it really is their internal discussions which --
DR. MCDONALD: Oh, okay, right.
DR. LUMPKIN: We -- we may base some of our discussions or positions on, but it's not something that we are, as a Committee, at liberty to release, because it certainly is --
DR. MCDONALD: You're right, and I apologize. But it gives you a lot of context that would be a lot easier to read, than to be talking about.
MS. FRAWLEY: We were just trying to signal you that somebody needs to look out this way ever so often, because all of us want to say something or ask a question.
DR. LUMPKIN: No, I just needed to clarify that --
MS. FRAWLEY: I just want to make sure that -- because you can't see us, so in addition to having a hearing problem, I can't see you.
DR. LUMPKIN: I'm sorry. No, I just -- I just need to clarify that --
MS. FRAWLEY: I'm going to change my seat. I don't know why --
DR. LUMPKIN: I just needed to clarify the issue of the documentation, because we do have a provision on which documents are released, and if we are going to discuss a document, it is a document that has to be released. So that document itself is not on the table.
MS. FRAWLEY: Yes. Two things. The first is we jumped into this discussion, and I think there are some of us sitting here who maybe understand this issue a little bit better than others, and we're throwing lots of things around, in terms of what we are talking about. So, that's point number one.
And Clem's reference to a document, now I understand what we're talking about there. And the other thing that Clem just said that I just want to make sure we get on the record again is, having had responsibility for admitting clerks and registration clerks and ER registrars, and having worked in innercity hospitals, and having to ask Medicare and Medicaid patients races and ethnicities, the first thing they would say to you is, why are you asking me that?
The biggest problem that we have is the source document, the medical record, does not have accurate information, and we were required obviously to our state health data organization to provide that information.
So, I certainly understand NADO's concerns, and the public health perspective, and the health services researcher's perspective, but I just want to make sure people understand that when you ask a patient, when they're standing at the ER counter, or in the admitting office, that question, it's like they're going to take a gun out, and I just want to make sure people understand that this is a loaded issue, and so, the clerks would make stuff up, just based on eyeballing you.
MR. SCANLON: Observation.
MS. FRAWLEY: Absolutely. And I hate to say that, but that is reality in 30 years of my professional experience.
MS. FYFFE: Let me, okay -- ask -- I think we have to get back up to 30,000 feet here. What is our role as a Committee? Do we need to be concerned about -- I don't think we need to be concerned about the internal operations of hospitals.
I don't think we should be concerned about the sensitive emotional nature of this thing. What we should be concerned about is, the objective data that needs to be collected.
Is that our scope?
DR. MCDONALD: No.
MS. FYFFE: It's not?
MS. FRAWLEY: No. That's why we're asking for clarification.
DR. LUMPKIN: Well, why don't we continue to go around, because I think that the question that you pose, which is, what is our scope, and how we address it --
MS. FYFFE: Yes.
DR. LUMPKIN: Is actually what's on the table.
MS. FRAWLEY: That's what I 'm trying to figure out.
MS. FYFFE: Okay, okay, well, I --
DR. LUMPKIN: So, maybe --
MS. FYFFE: I'm -- I'm confused about why we are concerned with the lesser issues. Not to offend anyone, but if we are the National Committee on Vital and Health Statistics, do we not have to, you know, state that there be a certain standard, and then all other issues are secondary to that?
Whether they be management issues; whether they be emotional issues. I mean, we are talking about statistics here.
DR. LUMPKIN: Well, rather than having a bilog, we're going to try to have a dialogue amongst all of us, and so I -- Simon?
DR. COHN: I'm almost afraid to add my comments in here, because I thought I understood what the issue was, and I'm getting increasingly confused.
Now, I guess, let me make sure that I think I understand what the issue is, and I thought the issue was, does race and ethnicity data go on the eligibility information, or does it go on the encounter information?
And I think -- is that correct"?community
MS. GREENBERG: No, that' s not the issue. But that's the problem. We're trying to figure out, we said to John, you make sure --
DR. LUMPKIN: Let's clarify the issue. The instance issue is, in how we deal with it, will depend upon how we want to deal with it.
The instant issue is, should it be on the A34, would it be added to the A37? Should it be neither? I mean there are four permutations of, yes, A34, no, A37 -- you know, you can go through those permutations.
MS. GREENBERG: But that's already on the A37.
DR. LUMPKIN: Yes, it's already there.
MS. GREENBERG: The part not used.
DR. LUMPKIN: Right. So -- or, do we want to address the other issue, which since I'm being asked, I think is appropriate for our Committee, which is, how health data can deal with key issues, particularly since we -- you know, there is a recent charge to deal with the issue of discrimination and try to document that, that's been given to HHS. What extent can the HIPAA forms allow us to carry out that charge?
So, I think that we can address this issue, and as a subcommittee, choose to either address just the A34, A37 issue, ask the Committee on Populations to address the broader issue -- or we can jointly work with them, to address both issues.
DR. COHN: Can I make a comment? Since we are really talking about two questions, perhaps I should just make a comment about what I think is the first question, and bifurcate them, because I need more information upon which to make a comment about whether we should even be collecting this data, which is really what you are beginning to bring up.
If one were to collect the data, in the best of all worlds, it would make sense to put it into the eligibility area, because it doesn't change. However, recognizing that employers are not required to submit eligibility data, based on using an A34, if indeed we as a Committee decide we actually think it is in the national interest to collect the data, we had better figure out some other methodologies, such as perhaps some encounter information to collect, and that would be my --
DR. LUMPKIN: Barbara.
DR. STARFIELD: I would like to give you some perspective from the Subcommittee on Populations, which discussed this at great length yesterday, after having a lot of e-mail correspondence, which a number of you participated in that.
I think that it is fair to say that the public health and research community are united in favor of having not only race and ethnicity, but a variety of sociodemographic information.
This Committee is on record as favoring it. Our coordinator elements have, I don't know how many, maybe 20 or so elements that are suppose to go in enrollment forms, including the kinds of data we are talking about now.
And the national imperatives as expressed in the draft, Year 2010 goals, you know, clearly make reducing disparities a priority. One of the two major priorities. You can't do that unless you have the data. And also, the recent initiative on discrimination.
So, the question is how, now that the two things that have been discussed are the enrollment forms and the encounter forms. The enrollment forms have lots of problems, most of which have been brought out here in this discussion we've had, but I guess the bottom line in enrollment is that there isn't hardly any enrolment information anywhere, even Medicare doesn't have enrollment information; it gets it all from, most of it, from Social Security.
And in the private sector, there is not much enrollment information, except as held by employers, who you know, are not particularly interested in sharing it, certainly don't have to share it.
So, we use the encounter form, and for all the reasons that have been said here, that that's really quite impractical. You know, even if you could do it accurately for race/ethnicity, stop to think about getting all the others that you think are necessary, and it clearly becomes impossible every time a patient comes in, to get all this information, you know, not only would providers be upset about that, but absolutely, patients would be upset about that.
So, you have to think about other ways to get this information. And there are two that have surfaced. The one that we discussed yesterday in the Subcommittee meeting, and another one that we thought up last night. And the one we discussed at the Subcommittee meeting was the geocoding.
If we could just simply have address on encounter forms, we would be able to geocode it. Now, I don't want to get into the details of it; actually, on paper, it sounds ideal. You know, in practice, it's not ideal, nor are zip codes, which are the things we use, are probably too big to do much with any accuracy.
There is a technology for block coding, but it's not -- and I think that it's been being tried in several states, and in fact, you know, it could be -- it could be reasonable in the relatively near future, so that is something that we shouldn't rule out right now. You know, almost all patients when they come anywhere, do have an address.
The second one that surfaced was the one that surfaced outside of the Subcommittee, was the possibility of moving on the technology of Smart Cards.
Some countries, particularly France, have moved very far in this technology, and there are some places in this Country that are using it, several places in California. We have some experts on it, in fact, I think we are going to invite one of those experts to a Committee meeting in the near future.
But people are used to carrying around cards, and it's actually a nice way to provide secure information. People have to put in their own PIN number. And it's something that deserves some considerable discussion.
The Subcommittee on Populations is planning to do this. We would be delighted, I think, to do it in conjunction with this Committee.
DR. LUMPKIN: Thank you. Jeff.
MR. BLAIR: I think I'm about to take a position that is a minority on the Committee. I feel like, to indicate in enrollment forms, eligibility forms, claim forms, race and ethnicity, creates an opportunity for discrimination.
And I think that, it is not necessary for the main mission that those forms are created for, which is reimbursement of patient care, and I do understand that there is an additional need to be able to have surveillance over discrimination, which needs to go forward, and that it might have been looked at as saying, well, here's an inexpensive way to do it is just stick the codes in the enrollment and eligibility forms, but I kind of feel that if that's the approach that is being used to monitor discrimination, it may be doing more damage than it is solving, because by putting the codes in, it creates opportunities for discrimination, instead of eliminating them. That's my thought.
DR. LUMPKIN: Clem.
DR. MCDONALD: Well, I like the new out, and maybe the out with Kathleen. I think the question at hand, as I understand it, is not really, should this data be collected in some world, somehow, sometime. The question is, should it be specifically applied to this thing designed for billing?
It is already a specific thing and is out there, you know, it's got a number on it and everything. And HIPAA's philosophy of, as was kind of eloquently stated is that we do not add additional burdens, and we are supposed to be administrative simplification.
And further, it probably won't get you what you want, because of all these reasons you described. So I think -- I mean, I wouldn't mind supporting the notion that those fields be said, they are allowed to be used, but not required. But I think more importantly, we have got to be realistic about this, and we need to find another mechanism, and as the additional data sets go, we have to also be realistic about those. They can't be laid on to the billing process. It will never work.
DR. LUMPKIN: So, having gotten to this juncture, we have an invitation from the Committee on Populations to jointly grapple with this issue. We have a charge from the Executive Committee to grapple with it, singularly. That's the way it came out of the Executive Committee, but I'm sure that they would have been more than happy to it jointly or so forth.
Is it the will of the Committee to then move forward and begin to grapple with this issue, looking at alternatives to the transactions, or addressing the issue of disparities in the delivery of health services?
DR. MCDONALD: I would move, so moved.
DR. LUMPKIN: I don't think we need a motion.
DR. MCDONALD: Well, you kept looking around, I figured that was --
DR. LUMPKIN: Well, I was looking around to see if there is anyone in opposition. I was kind of gauging -- it seems --
MR. SCANLON: Clarification. To get at one of the limitations that Clem raised, whatever the Committee's recommendation in terms of how it's collected, you may want to consider recommending that it be collected in a standardized way, and that would be the way, pretty much, the federal government uses it, or some other standard.
There is a way of defining --
MCDONALD: And actually, what's really happening is the OMB specs are getting stuck into all the standards, anyway, so where the fields appear, those will stick. And I hope their code list is better than the one --
MR. SCANLON: The standard becomes --
DR. LUMPKIN: Kathleen?
MS. FYFFE: Yes, I'd like to reiterate and confirm what I said earlier. I, number one, think that the public health issues surrounding this ought to be up to Dr. Starfield's Subcommittee on Populations, so that the issues, and that the issues of discrimination and the issues related to the operation of this within healthcare organizations, I don't think are within the scope of this Subcommittee on Standards and Security.
Now, if we take a vote, obviously, you know, I will do whatever you all want me to do, but I think that we need to focus on the standards themselves, and the recommendations for the way things should be, and the lesser issues of the discrimination and the operational implementation are not as -- are really not within the scope of this Subcommittee.
DR. LUMPKIN: Well, if I could respond. I think I would disagree. I think that the charge of the Subcommittee is to really focus i on administrative simplification, and not transactional standards.
And if I am a provider, in an office setting, and I am going to be required by somebody to do some reporting, it is going to be much easier for me to check one box on an A37 form, that gets put in there, and then it goes off, than to fill out a whole separate form, on something that's required.
So, I think that there are some administrative simplification issues, which look at, not what the requirements are for the billing, but what I believe our charge is, is at the site in which the value is created for the customer; in this case, the customer is the patients and citizens of the Nation. And the value that's added is the healthcare encounter.
Now, how do we enhance the value of that encounter? And part of our charge is to do it by simplifying the administrative stuff that providers have to do, that don't add value to that encounter.
That may include billing information. It may include encounter information which, in our new environment, doesn't really have anything to do with billing. It may include other reporting requirements.
If we could develop a way to report on cases of syphilis, without having to do a separate form, that would dramatically enhance the simplification at the site of value being added.
So, I think within that context, the role of the Committee ought to be to look at what is going on with other committee, and then try to meld that into the task of administrative simplification.
MS. GREENBERG: Well, taking a slightly different stance, but I do think that the quality of the data has got to be of concern to the Committee, and so, if looking at how data are collected, or where they are collected, how it actually works in the environment itself, reflects on the quality of what you can gather.
And that seems to me that it would be, that would certainly be in the purview. It wouldn't be, probably, say, do it this way, do it that way, but you've got to look at, you know, what you're collecting and the quality of it.
In any event, I wondered if either Don or his successor would want to respond to this letter from NADO, and are you recommending that the response be that the -- well, you'll have to decide, I guess, during the meeting to day, but the potential response, or one response is that the Committee is going to be looking into this.
DR. MCDONALD: Well, the address thing, I'd just like to focus in on a little more. That actually has some spectacularly nice things, because you really like to know the address for lots of reasons. The question is, does anyone know whether that is now required, available, etcetera, in any of these transactions, and how it must be stated to make it easy for geocoding?
MR. SCANLON: The complete address.
DR. MCDONALD: Is it part of the A37?
MS. GREENBERG: For bill sending. My own clinical experience says that you always get addresses.
DR. MCDONALD: I mean, what we might want to focus in is requiring the address.
DR. LUMPKIN: Well, yes. And I think that may be an implication, because somewhere down the line, and I think we need to understand the technology of geocoding and using that as a surrogate for race, and whether or not the degree of accuracy of doing that is better than the degree of accuracy of having the clerk in the emergency department, or elsewhere, guess. And fill out the form.
DR. MCDONALD: We have only 55 percent recorded, despite the fact that it comes up on the screen, and we tell them to record it.
MS. FRAWLEY: Just two points to follow up on what your question to us was. I mean, I am delighted to work with Barbara's subcommittee, I mean, have a joint process. I think that would work very well, so I support your proposal. And I just want to make sure, can somebody write the words, NADO down, because we're intermixing discussions right now, because I want to follow up on that piece, but not in the middle of this discussion. Just so we can finish the discussion that we are trying to have.
DR. COHN: I was going to say -- not talking about NADO, but I think it's a very worthy area that we should investigate further in. And when we observe that, I think it's an issue that spans both subcommittee interests
DR. STARFIELD: Can I suggest that, well, I don't know, you take an action that you want to do something joint with Population? You have done that? Okay. I suggest that maybe you should support the notion that we ought to have somebody, an expert, come and talk to the full Committee on Smart Cards, and I think Don has had some discussions with --
MS. FRAWLEY: Is that right?
DR. LUMPKIN: Yes. Yes, there's a -- actually, there is person who is lined up who was going to be at this Subcommittee meeting, but there was a conflict, and so we are going to try to schedule her to come -
DR. STARFIELD: It must be Tina.
DR. LUMPKIN: So, perhaps we could do it at the full Committee --
DR. COHN: I want to say that the issue is wider, it's much beyond Smart Cards. Smart Cards are one particular technology to address that issue, and I want to make sure that whatever panel, or otherwise we are doing, addresses the wider issues.
DR. LUMPKIN: Yes.
MS. GREENBERG: I just wanted to say that I think it would be good to hear from some of these state data organizations that are collecting it through encounter. What their view is, how do they use it? What is their view of the quality of the data? You know, have they verified it against other data to think that it is pretty much in the ballpark? I mean, because they clearly --
DR. MCDONALD: That's Utah, where they don't have them -- that's really what we're talking about, and --
DR. DETMER: Actually, New York State, too.
DR. MCDONALD: He's picking on Utah, again.
MR. BLAIR: Could somebody help me underhand, too. I've heard Smart Cards referenced a couple of times, and as Simon said, that's a technology. It could be used to address understand; it could be used to have patient cards on an interim basis; it could be used to control pharmaceutical usage; there are many different types of Smart Card technologies.
What is the issue that is trying to be addressed, when somebody says, Smart Cards?
DR. LUMPKIN: Well, I think that what we are looking at will be, is that, as I understand the approach, would be to look at alternative technologies, other than in encounter form, for collecting the data that is needed to address the issue of disparities.
And so, the address issue would be explored. Smart Card technology which says, let's just completely offload it off the process, put it in the patients' hands. Other technology will be explored. If we have some background on that, we will be in a better position to make recommendations.
MR. BLAIR: Okay, so it's within the context of data collection technologies, is that correct?
DR. LUMPKIN: Correct.
MR. BLAIR: Okay.
DR. COHN: But I do think that there are two questions, though. One is the technology, the other is, what exactly are we trying to get? Are we getting the actual race and ethnicity data? Are we talking about geocoding? I mean, exactly what are we talking about, and what is the best strategy to get the data that we can use that gets the value?
DR. LUMPKIN: Which gets to the data quality, which is that, if let's say, one technology or approach gives us 90 percent accuracy, and another one gives us 95 percent accuracy, and another one gives us 100 percent accuracy, then we can then evaluate the precision of the data, versus the cost and the administrative hassle.
So, I think we need to, by for instance, inviting some of the data organizations, understand how comfortable they are with the current process.
DR. COHN: But I would actually even bring that down a level further, because part of the question of data quality is, exactly what data for what purpose? And for example, it may turn out that geocoding, if we're looking at our disadvantaged populations -- not necessarily sliced on race and ethnicity, might be better than race and ethnicity.
The question is, is what are we really trying to get at the end of the day? I think that's the exploration we need to go in.
DR. LUMPKIN: And I think you described it. I'm not going to try to paraphrase it
DR. STARFIELD: There is one thing. These are not mutually-exclusive, the geocoding and the Smart Card.
DR. LUMPKIN: No. No. No.
MR. MEYER: Chuck Meyer, McKettson, HBOC. So, obviously, we need to look to -- I think I should point out pragmatically, in keeping with what Simon said, identification of Smart Card is a technology.
It is just that, a technology. It carries information. You face exactly the same problem sin capturing that information. You cannot place a Smart Card on somebody's forehead and it just assumes the information.
The hospital or some other agency has to collect the information, put it on the card, give it to the individual. You still have the opt-out functions and all of that comes into play. But you are still back to square one on that, and that is the issue of data capture, which may or may not be valid for the Committee.
What is valid for the Committee is a statement of support for the inclusion of certain public health information, in a given transaction set. And at the point of information, those discussions are ongoing now, within the A37 Work Group, and the public health community, addressing the validity of that data, because the public health community has stepped up and said, we are dependant now on claims data, for the vast majority of our information.
You are being forced to implement A37. Please consider the inclusion of our information so we don't' lose ground by going to the standard. And in my perspective, that's where this whole argument should be. Thank you.
DR. LUMPKIN: Thank you. Well said
DR. STARFIELD: Well put.
DR. LUMPKIN: And our role, as a Committee, and this I think kind of branches us into the next item, that there are very strong constituencies who are concerned about this issue, and we need to hear from them, before we make a recommendation on some process
DR. STARFIELD: But it sounds to me like we should do this as a full Committee, do you think?
DR. LUMPKIN: Well, I think --
DR. STARFIELD: Once you talk about the two subcommittees, you essentially have the full Committee.
DR. LUMPKIN: That's right.
MS. FRAWLEY: You've got the whole thing
DR. STARFIELD: Minus one person, I think.
DR. LUMPKIN: And I thought Don had gotten this off the full Committee's plate.
DR. COHN: Well, I was going to say, the CPR, when we did the unique health identifier, we actually brought together, it was a combination of two subcommittees holding the hearings, and that may be constructive for this, and --
DR. LUMPKIN: So, we'll work on a venue to do that. Okay.
MS. FRAWLEY: NAHDO.
DR. LUMPKIN: NAHDO.
MS. FRAWLEY: Because we keep mixing apples and oranges. We keep bringing this up, and I just want to make sure I'm -- because I -- when we went through the whole process when we first started, in September of 1996, we were inviting everybody we could find to come in and talk to us, before we ever made any recommendations to the Department; before the Department started all of their working activities, and I know we asked the public health people to weigh in NAHDO, and receive testimony and all that stuff, and I know the NPRMs were published and I assume that these organizations sent in comments.
So, what I am getting concerned about is that, I'm getting -- I'm feeling like a group is lobbying this Committee, and I'm feeling uncomfortable about why are we -- I mean, I just -- I'm stating, I'm not quite sure in terms of process now, where we are in terms of NAHDO. I'm just confused at this point, why NAHDO is faxing us a letter and asking us something
DR. STARFIELD: I don't think we are being lobbied at all. In fact, I think this whole thing surfaced with some memo from the Data Council, which some of us saw and got concerned about.
DR. LUMPKIN: And I think appropriately, NAHDO is a major user of this kind of data, and I think that their letter is just fortuitous, because it reminds us that we really need to ask some very pointed questions to them, about the precision of their estimates, given what we know are quality problems with the current data, and whether or not they ought to be looking at enhancing their precision through different approaches, rather than trying to maintain current and precise descriptors and approaches to collecting the data.
MS. FRAWLEY: Just to follow-up on that point, then, because I just want to make sure I understand. So, when we had all the hearings in 1996 and 1997, did we not ask the right questions of the state health data organizations, and NAHDO, and -- I mean, I'm thinking we had Elliot and we had Walter -- I mean, I'm thinking, I was here. I remember everybody coming, so is it our failure as a subcommittee to ask the right questions, or they didn't tell us the right information, or --
DR. COHN: Can I answer that one a little bit, only because my experience in all of this, and I -- you know, I think in all of the world's of information technology and all of this, we are all struck with people who comment about things, who understand things to a certain level, and then as issues -- then more issues come up, and I think this is an excellent example of something that was not understood, not foreseen a year or two ago.
I actually think it's wonderful that they sent us the letter, and I think we should ask them to testify. I don't think it's any error on the Committee's part.
DR. LUMPKIN: And if I can --
MS. FRAWLEY: That's what I 'm trying to get to.
DR. LUMPKIN: And if I can build on that, we've had a number of kind of abstract discussions about maintenance of these transactions, and what's our involvement? And here we have a concrete issue that we can, and ought, to play around with, as to not only, how do we address this issue, but how do we set up a process of determining what's a big enough issue to really talk about maybe making some changes in the transaction standard?
MS. GREENBERG: Well, also, I think, just to understand how I think this happened is that, this was an issue being discussed in the Department. It came onto the Agenda of the Executive Subcommittee which is, you know, on the Web site.
And so, organizations -- and there was some discussion, and then it got on this Agenda. So, I mean, it was public notice that this was being discussed, so this organization having a strong interest in it, wrote in a letter. I don't think it reflects an error on their part or on the Committee's part. I think it's part of the process.
MS. FRAWLEY: I just want to go back on the record and just make sure people are understanding -- I mean, I commend NAHDO, and particularly Denise Love for bringing this forward and faxing the letter, so I just want to make sure people understand, I am not all -- I have been a member of NAHDO for many years and support their fine work.
I'm just confused in terms of, it's a process thing, like how did these things wind up on our Agenda, and I know the Executive Committee asked us to take this, but I just am trying to find out, because I thought when we were doing all the data-gathering, to the multiple hearings, that we were getting the right questions asked, and I was trying to figure out, you know, where if there was a breakdown, or it was just one of these flips, that after -- after we got all the information, we realized we didn't account for this scenario. And I think that's we are, right
DR. STARFIELD: I don't think the Committee missed anything. I think that it was assumed it was being handled all along. And because we kept asking about the core data all along, and we kept being assured that they're all in there.
Well, in a sense they were in there, but in fact, they really weren't in there.
MS. FRAWLEY: I just want to make sure because having sat through this discussion now for some years, I'm just trying to make sure I'm recalling things correctly. Thank you.
DR. LUMPKIN: "Okay. Then, this will come back to us. I think we will try to address this at our next meeting of the full Committee. And it will be an ongoing issue that we will want to address.
DR. COHN: I was wondering, are we done with the -- I had another issue that I wanted to bring up about something the Committee --
DR. LUMPKIN: And I was just going to say that we have now completed the items on the Agenda, so is there any new business?
DR. COHN: I'm sorry. I was afraid you were going to adjourn the meeting. I actually just wanted to bring up a small point that Bill Braithwaite brought up earlier, that had to do with first report of injury, transaction standard. That may be coming up over the next, sounds like, four to six months, potentially.
I do know that the Subcommittee on Privacy and Confidentiality has as one of its issues, to look at the area of confidentiality around workers compensation, and I thought that that was actually potentially a very interesting fit, since really, the first report of injury is the workers compensation, first report of injury form. And that there might be some, possibly leverage there. I certainly think it is something that we should, in our responsibilities, take a look at. And I just wanted to put that on the table for everyone.
MS. FRAWLEY: I think it's excellent, since we're the same group that goes from the one subcommittee to other, so we can just change which hat we're talking about.
I agree, because that's one of the things that we've been struggling with is that, within the Department, we've had these discussions, and outside the Department, that workers comp, you know, how this whole process starts and then the xeroxing of the records and the information flow is something that no one has put their arms around, and then we're trying to figure out what the standard is going to be.
So, I think this would be a good way to solve that one.
DR. LUMPKIN: Jeff.
MR. BLAIR: I've been contacted by some folks within the Social Security Administration, wondering whether or not they need to get involved in the standards process in terms of information collection for workmens compensation, or whether they should wait until all this stuff has been developed, and then, you know, come join and use it.
And of course, I've been encouraging them to become part of the standards development process, not only because they get information from different sites of care that we don't necessarily deal with, just when we focus on patient care. Plus the fact that there's data elements that they look for in terms of functional status, that we might not put as much emphasis on as we go through our normal standards process.
And if whoever is trying to work on this, I can pass on the names of the people within the Social Security Administration that are attempting to get them to be more aware that there are processes out there that they should become part of. So, who should I pass that information on to?
DR. COHN: I suspect just saying it is probably enough for the moment. It's on record now.
MR. SCANLON: Well, actually, why don't you give it to us? First of all, SSA is represented on the Data Standards Committee -- but I think any additional names, give them to us and we'll put the two of them together.
MR. BLAIR: Okay. Jim, I'll send that to you.
DR. LUMPKIN: Any other items for us? Okay. At this point, then we are scheduled to adjourn. The full Committee will be meeting in about 20 minutes.
(Whereupon, at 1:20 p.m., the Working Group Subcommittee Meeting was adjourned.)