[This Transcript is Unedited]
Hubert Humphrey Building
Room 505-A
200 Independence Avenue, S.W.
Washington, DC 20201
DR. LUMPKIN: Good morning. Let's get started. Let me just sort of let you know what we're going to do today. The first item on the agenda is we're going to go around and do our voice introductions for the folks who are on the internet, and then we're going to do a quick point on identifying the action items. We'll follow that with our first ethics briefing discussion, and then after that we will then take up our action items, and then proceed with the rest of the agenda. The goal is to make sure that we have as much as possible done before people start taking office, since the weather, it's promising to be less and less inviting as the day goes on.
So let's start off first with the call to order and introductions. My name is John Lumpkin and I am chair of the Committee. So let's start off with Jim.
MR. SCANLON: Good morning, I'm Jim Scanlon, I'm the executive staff director for the Committee and I'm the head of the Office of Science and Data Policy in HHS.
DR. HUFF: I'm Stan Huff with Intermountain Health Care and the University of Utah in Salt Lake City, Utah. I'm a member of the Committee.
DR. ZUBELDIA: Kepa Zubeldia with Claredi Corporation, member of the Committee.
DR. FITZMAURICE: Michael Fitzmaurice, senior science advisor for information technology with the Agency for Healthcare Research and Quality, liaison to the National Committee and staff to the Subcommittee on Standards and Security.
DR. STEINWACHS: I'm Don Steinwachs, Johns Hopkins University, and a member of the Committee.
DR. MAYS: Vickie Mays, University of California, Los Angeles, member of the Committee.
DR. DANAHER: John Danaher, Quick Compliance, Incorporated, member of the Committee.
MR. BLAIR: Jeff Blair, Medical Records Institute, and member of the Committee.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the Committee.
MR. CONDRAY: I'm John Condray, I'm an attorney with the Department of Health and Human Services, Office of General Counsel Ethics Division, and I'm on the agenda this morning.
MR. HOUSTON: John Houston with the University of Pittsburgh Medical Center, I'm a member of the Committee.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health and member of the Committee.
DR. LENGERICH: Gene Lengerich, member of the Committee, Penn State University.
MS. HANDRICH: Peggy Handrich, member of the Committee, Wisconsin Medicaid and Health Information and Vital Statistics Collection Board, I think I neglected to mention that yesterday.
MR. LOCALIO: I'm Russell Localio from the University of Pennsylvania, I'm a member of the Committee.
MR. ROTHSTEIN: I'm Mark Rothstein from the University of Louisville, member of the Committee.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the Committee.
MS. CRUTE: Sherre Crute, I'm the writer for the Populations Committee.
MS. JACKSON: Debbie Jackson, NCHS staff.
MS. WILLIAMSON: Michelle Williamson, National Center for Health Statistics, CDC.
DR. EDINGER: Stan Edinger, ARHQ, and lead staff to the Quality Workgroup.
MS. WHITE: Gracie White, NCHS staff.
MS. SQUIRE: Marietta Squire, NCHS staff.
DR. LUMPKIN: Ok. John if you could just wait one second and let me just identify, we have the action item from Populations. Do we have any other action items that we need to --
MS. GREENBERG: The annual report.
DR. LUMPKIN: Ok, so we'll finish up the annual report. Any other action items? Ok, we'll take those immediately after our ethics training. Let me call your attention to the fact that we do have a document in front of you. Please do not leave without signing this document, and you can change the '02 to the '03, only if you want to be current, but if you don't change it then you'll have to do another one.
MR. CONDRAY: The other note that I'd like to put on there is it's very important to drop it off before you leave because the address has not been updated for the recent shifting of the office.
DR. LUMPKIN: John, thank you.
MR. CONDRAY: Thank you. Good morning and thank you all for braving what passes in the Washington, D.C. area for a snow storm. I can tell you, my name is John Condray and as I said earlier I'm an attorney with the Ethics Division of the Office of General Counsel here at HHS. This is my inaugural appearance as a member of the Office of General Counsel Ethics Division but it's a subject area that I've been in for quite some time. Prior to that I worked for three years at the National Institutes of Health as an ethics service center to some of the Institutes there, and prior to that I worked for ten years as a staff attorney at the United States Office of Government Ethics. And prior to that I worked for a year and a half as an ethics attorney for the Internal Revenue Service. Having worked as an ethics attorney for the Internal Revenue Service and then worked for an organization called the Office of Government Ethics, I was just happy to move into a field that not only did some good in terms of public health but provided me with a job that was not a punch line.
And I can also tell you that I am that rarest of breeds a native Washingtonian, so when I tell you that that's what passes for a snow storm in the Washington area I speak from experience.
My presentation this morning, I'm going to start with a 20 minute videotape that was made by the Office of Government Ethics concerning the ethics standards that apply for special government employees serving on advisory committees. I will then review the structure of the ethics program that would be of concern for members of the Committee here. All of the material, both the videotape and I will cover this morning are in the more detailed handouts that all of you have received. One is a comprehensive handout from the Office of Government Ethics concerning standards that apply to all special government employees, and another is a shorter handout from the Department of Health and Human Services OGC ethics division, having to do with ethics for, the ethics standards for SGE's serving on advisory committees.
As time allows, I will take some Q & A on the structure of the ethics program and members having a specific question about a specific situation I would ask that you bring those to the attention of the DFO, Marjorie Greenberg, or myself, at a later time instead of trying to solve a thorny problem in an open session like this.
As I said I'm going to start off with a videotape. I chose this videotape as I was preparing this presentation in part because I was at the Office of Government Ethics when it was made, and in fact I appear in one of the scenes. So bonus points will be awarded for spotting the ethics attorney in the video. Get the lights? And this worked this morning, let me try it.
Videotape.
ANNOUNCER: All over the world nearly three million people come to work for the U.S. government, but they're not all full time employees. Some work for only a few weeks a year, others for only a few days. Some provide their services without compensation.
Art professor Neil Everett is in Washington, D.C. to work with the National Endowment for the Humanities to serve on a panel reviewing grant applications. During his federal appointment, he'll become what's known as a special government employee, and in the process he'll encounter some rules of conduct, some ethical questions he never had to deal with at Hanford University.
By accepting a temporary position on an advisory committee for the Food and Drug Administration, Dr. Janet Franklin has also become a special government employee. In her regular job as a research physician at a large medical center, Janet never had to consider the conflict of interest laws and regulations that will directly affect her during her employment.
Because he's a consultant, Al Dover is used to giving advice and information. But now as a special government employee advising the Navy on a new fighter plane, Al must be careful about what he says and does because of some very specific ethics laws and rules.
The government ethics issues facing people like Neil Everett, Janet Franklin and Al Dover actually arise before they physically show up to perform their government service. The questions arise first on paper.
MR. DOVER: "Your directions were perfect. I even found a spot in front of the building. But I thought all the paperwork was finished."
STAFF: "Almost. I just had a couple of questions about some of these items on your financial disclosure form."
MR. DOVER: "Oh, the stock I own at DSI, yes."
STAFF: "Aren't they building the airframe for the plane you'll be consulting on?"
MR. DOVER: "DSI? Yes."
STAFF: "You know, there's a criminal law that prohibits you from taking any action on behalf of the government that could affect your personal financial interest."
MR. DOVER: "I thought I'd sell the stock before I started working on the project."
STAFF: "Ok. But that might not be necessary."
MR. DOVER: "Why not?"
STAFF: "Well, it all depends upon how much stock you have. If your holdings aren't substantial you might be able to get a waiver."
MR. DOVER: "You mean if I get a waiver I can keep this stock? No, I was going to sell the stock anyway."
STAFF: "Well, that solves that. But there is still the matter of your wife's stock in Metal Parts Corporation."
MR. DOVER: "Metal Parts. What's the problem with them?"
STAFF: "Well, they're the sub on the DSI contract. They're supplying the quick release fasteners for the new plane."
MR. DOVER: "I didn't know."
STAFF: "Naturally, any advise you give us could affect the subcontractors."
MR. DOVER: "Of course. I just don't know if my wife will want to sell the stock right now."
STAFF: "The same thing applies. If the holdings aren't substantial you might be able to get a waiver, just for the Metal Parts stock."
MR. DOVER: "I don't really know how much she has. Can I check and give you a call?"
STAFF: "Sure, no problem."
MR. DOVER: "Great. Suppose we run into a problem --"
ANNOUNCER: Section 208 of the Criminal Code prohibits employees from acting on behalf of the government in certain matters in which they or their spouses have a personal financial interest. That's why Al's stock in the prime contractor building the plan and his wife's stock in one of the subcontractors presented problems.
In conflict of interest cases like this, one solution is for employees simply not to work for the government on matters in which they have a financial interest. But sometimes, as the Navy ethics official explained, if the financial interest is not substantial, the restriction can be waived. Of course, selling the asset that created the conflict is also an option.
Employees are also prohibited from acting officially in matters in which their minor children or private employers have an interest. How can a private employers interest create a conflict? Ask Janet Franklin.
SPEAKER: "Congratulations, that's exciting."
DR. FRANKLIN: "Yes, the Food and Drug Administration, I'm flattered."
SPEAKER: "There's something I don't understand, though."
DR. FRANKLIN: "What's that?"
SPEAKER: "Well, it seems to me that any drug testing standards your committee recommends for the industry are going to affect the grant you're working on here."
DR. FRANKLIN: "You're right, they probably will."
SPEAKER: "So isn't that a conflict of interest?"
DR. FRANKLIN: "I suppose so. But the whole reason the FDA wanted me on their committee was because of my research experience here."
SPEAKER: "Yes, but if it's seen as a conflict, how can you --"
DR. FRANKLIN: "Apparently it's a fairly typical problem, that's why I was granted a special waiver."
ANNOUNCER: A waiver provision in Section 208 can be used to exempt special government employees like Janet if the official who appointed them certifies that the need for their services outweighs the potential for a conflict of interest. Janet was a good candidate for this kind of waiver because she's a highly regarded expert in her field, and because her employer, the medical center, wasn't going to be affected by the committee's work any more than other medical research facilities.
Don't get the idea, though, that waivers under Section 208 are routine. Take Neil Everett, our art history professor reviewing grant applications for a National Endowment for the Humanities peer review panel. He was told he'd have to disqualify himself from considering any applications that were submitted by his employer, Hanford University. Neil was also warned that reviewing certain other applications might call into question his impartiality.
STAFF: "All of these people want grants?"
MR. EVERETT: "These are just the ones my panel has. Look at these. Retrospectives, international shows, uh oh."
STAFF: "What?"
MR. EVERETT: "This one's from -- University, the art museum."
STAFF: "I didn't know anything about it. That's Frank's division."
MR. EVERETT: "That may not matter. How's it going to look if I recommend a grant for the art museum where my wife works?"
ANNOUNCER: Neil would probably face reasonable concerns about his impartiality if he participated in a matter affecting his wife's employer. Because of these concerns, Neil should disqualify himself from reviewing that particular application, unless the agency he's working for specifically authorizes him to participate.
When grant applications being reviewed are part of a competitive application process, reviewers like Neil sometimes have to disqualify themselves from reviewing an entire pool of applications, even if there is a conflict involving only one of the applications in the pool. A spouses employment is not the only way impartiality issues can arise.
RUNNER: "-- Dover, I didn't know you were a runner."
MR. DOVER: "Well, I try. Great day for it, though."
RUNNER: "Boy, you're right about that. I'm hearing good things from the program officer about your work on our new bird."
MR. DOVER: "Thank you, sir. Things are going pretty well."
RUNNER: "Listen, Dover, I might have something else for you guys. We've got some problems with those rotor blades we're trying to retrofit on the CH32(?) choppers, sounds like it's right up your alley."
MR. DOVER: "I'd love to help you out Admiral, but isn't Engineering Dynamics making those blades?"
RUNNER: "Yes."
MR. DOVER: "That could be a problem."
RUNNER: "A problem?"
MR. DOVER: "Well, let's say the appearance of a problem. You see I finished a job for them last month, no defense stuff but it might not look right."
RUNNER: "I didn't know you did work for Engineering Dynamics."
MR. DOVER: "Yes."
RUNNER: "I'll tell you what. I'll have someone run it by our ethics officials and get back to you later in the week."
MR. DOVER: "Great, thank you, sir."
ANNOUNCER: Because Al worked as a consultant to Engineering Dynamics within the last year, his working for the Navy on a matter involving this company might present an appearance problem. The rule is, if a reasonable person would question Al's impartiality, then he shouldn't work on the project unless he specifically authorized to by the Navy.
Conflicting financial interest, impartiality or appearance concerns. Are there any other ethics issues that affect special government employees?
SPEAKER: "Janet, I understand you're working with the FDA now."
DR. FRANKLIN: "Yes, I'm on a committee, it's really fascinating, I've never done anything like this before."
SPEAKER: "Drug testing is quite a responsibility, it's going to make a big difference in the industry."
DR. FRANKLIN: "Yes, I suppose it will."
SPEAKER: "You're talking to a lot of companies, too, aren't you? I hear Metatron has some fancy some new laser analyzer, you know anything about that?"
DR. FRANKLIN: "Forget it Sam, I can't talk to you about any confidential information. Excuse me."
SPEAKER: "Oh, well I'll buy you lunch. There's no law against that is there? Hey, I'm the birthday boy!"
ANNOUNCER: As a matter of fact, there are rules limiting acceptance of gifts by federal employees, and that includes some meals. In general, you cannot take gifts from people or organizations that seek some kind of action by the agency you're working for, do business, or seek to do business with the agency you're working for, conduct activities that are regulated by the agency you're working for, or have interests that may be substantially affected by how you perform your official duties. Also, you can't accept gifts given to you because of your official position.
For Janet, the rules means no gifts from pharmaceutical companies that are regulated by or are trying to get drugs approved by the FDA. For Neil, that means no gifts from universities or museums applying for NEH grants. And Al can't accept gifts from companies that have Navy contracts or companies that are bidding on Navy contracts. There are sensible exceptions that allow you to accept gifts from family members or personal friends. And it's ok to accept gifts based on outside business or employment relationships.
For example, suppose Janet's firm invites her to a golf outing. She can accept as long as the invitation is given to her because of her employment relationship, not because of her position on the FDA Advisory Committee. By the way, you're permitted to accept occasional gifts that are valued at under $20 dollars per occasion, provided the gifts don't total more than $50 dollars from one source in one year. So an infrequent gift of lunch at the local sandwich shop shouldn't be a problem.
Just as you can continue to accept most of the gifts you're used to accepting, your employment with the government should not significantly affect other business or personal activities. There are, however, some special ethics rules on teaching, speaking, and writing. Like many special government employees who have been hired because of their particular expertise, Al does quite a bit of writing and speaking in his field. Al can continue doing most of these activities, but there are some important rules about what he can and cannot do, and about the compensation he's allowed to accept.
MR. DOVER: "Now if there are any more questions --"
SPEAKER: "I was wondering Dr. Dover, now I know you're working on the wings adjust problem with the F-29 jets for the Navy, can you comment on what you've found so far?"
MR. DOVER: "Well, first of all, I'm working on the F-29 for the government, so I can't talk about that in any depth. I can say, however, that generally the problem relates to corrosion, and that's typical for any aircraft that operates in a marine environment. And second, our work is still preliminary, so until it becomes public, I can't discuss it. Any more questions?"
SPEAKER: "Dr. Dover, you mentioned something --"
ANNOUNCER: Al is free to make a presentation on airframe stress, that's his area of expertise based on his experience and his educational background. And he can accept a fee for that. There's also nothing wrong with a brief mention of his work with the Navy, but Al can't disclose non-public information under any circumstances. And as a general matter, he can't accept compensation if his talk or any writing or teaching he does deals in any significant part with his government work.
There are a few other limitations on outside teaching, speaking, or writing. You cannot accept compensation if the activity itself, giving a lecture for example, is something you're doing as part of your government duties. You cannot accept compensation if you were offered the opportunity primarily because of your position with the government rather than because of your expertise. And you cannot accept compensation if the invitation or the compensation comes from an organization or a person that maybe affected substantially by how you perform your government duties. There are also restrictions imposed by criminal statute on the extent to which special government employees can represent others to the government, whether or not compensation is involved.
MR. DOVER: "Paula."
PAULA: "Al. Great talk."
MR. DOVER: "Thank you. I haven't seen you in a while. What are you up to these days?"
PAULA: "Well, we're still working on that reconnaissance plane, but the truth is we've run into some snags."
MR. DOVER: "Snags?"
PAULA: "Yes, we're in the process of putting together some experts to go over and talk to the engineers at NAVAIR. What's your schedule like, Al?"
MR. DOVER: "Oh, no, I would love to but under other circumstances --"
ANNOUNCER: Al is a special government employee who's been serving the Navy over 60 days in the last one year period. Because of this, he can't represent anyone else to the government on specific party matters that are pending before the Navy. Matters like the reconnaissance plane contract between the Navy and the company Paula works for.
MR. DOVER: "I'm sorry, Paula, but that's why I can't do it. It would be a conflict for me."
PAULA: "I understand."
ANNOUNCER: You should know, however, that nothing prevents you from representing yourself as an individual to the government. There's also an exception that may apply if you want to represent a family member.
Suppose you begin looking for a new job. Are there any ethics restrictions on what you can do while you continue working as a special government employee? And what about after you complete your government service? Are there restrictions on what you can do then?
SPEAKER: "Neil."
MR. EVERETT: "Diane, how are you?"
SPEAKER: "This is wild, I was just thinking about you."
MR. EVERETT: "What are you doing in Washington?"
SPEAKER: "Funding, guess what I was thinking about you? The museum's submitting a grant application for a van Gogh exhibit, we needed someone, and your name came up. Do you have some time for lunch, my treat?"
MR. EVERETT: "Not really, I was going to grab a hot dog. Want to tag along?"
SPEAKER: "Sure. We could sure use you on this, you'd be perfect, especially now with all you know about NEH grants. So, what do you think?"
MR. EVERETT: "van Gogh, oh boy, it's just well, you put in that grant request for the Casatcho(?), didn't you?"
SPEAKER: "Sure did. Anything to tell me?"
MR. EVERETT: "No. In fact, Diane, I'd love to work on this van Gogh thing, but I'm on the panel that's supposed to review your Casat application and --"
SPEAKER: "You can't do it right?"
MR. EVERETT: "Well, not exactly. I mean not as long as I'm connected to your Casat grant. But maybe the agency could find someone else to do that review."
SPEAKER: "Could they do that?"
MR. EVERETT: "I think so. Then I'd be free to talk about working on the van Gogh retrospective. Let me see if there's a way to work this out."
SPEAKER: "Great. How about that hot dog?"
ANNOUNCER: Since Neil has now begun seeking employment with Diane's museum, the rule is that he can no longer act officially on matters that would affect the financial interest of the museum. Unless of course, his agency specifically authorizes him to.
MR. EVERETT: "Excuse me, excuse me. Look, my government appointment is just about up, and I'd like this van Gogh job. Am I going to have a problem here?"
SPEAKER: "Not if you disqualify yourself immediately you won't."
MR. EVERETT: "Are you sure? I thought there were criminal laws against representing someone back to the government after you leave government. What do they call them? Post employment restrictions."
SPEAKER: "Well, you're right. But in this case, working on the van Gogh retrospective would be fine. Relax, go get some lunch."
ANNOUNCER: For most government employees, like Neil, the post employment restrictions only bar former employers from representing others back to the government on the same particular matters involving specific parties that they worked as a government employee. The van Gogh retrospective is a new matter so it doesn't raise a post employment problem for Neil.
Suppose, though, that the art exhibit is asked to represent on is not new and different. Suppose it's a matter he worked on for the NEH. Would that change Neil's post employment options? Well, let's take a look.
SPEAKER: "Neil."
MR. EVERETT: "Diane. How are you?"
SPEAKER: "This is wild. I was just thinking about you."
MR. EVERETT: "What are you doing in Washington?"
SPEAKER: "Funding. Guess what I was thinking about you? You just finished a stint at the National Endowment, didn't you?"
MR. EVERETT: "Yes, it was great."
SPEAKER: "Listen, do you have some time for lunch? My treat."
MR. EVERETT: "Not really, I was just going to grab a hot dog. Want to tag along?"
SPEAKER: "Sure. You know the grant we got for the Monet exhibit?"
MR. EVERETT: "Sure, I was on the committee that recommended it."
SPEAKER: "Well, our project administrator just left and we're looking for a replacement, someone who knows how to deal with the NEH, naturally your name came up. Now that you've got all this experience --"
MR. EVERETT: "Diane it sounds great, but I was on the committee reviewing that. I can't switch sides now, represent your museum back to the government, not on that same issue."
SPEAKER: "But your appointment's over, isn't it?"
MR. EVERETT: "Doesn't matter, as long as that business continues, you, the Monet exhibit and the NEH, I'm out of the picture. But if anything new comes up --"
SPEAKER: "Well we're thinking about a van Gogh exhibit."
MR. EVERETT: "Hot dogs, I swear I can almost taste one in my mouth."
ANNOUNCER: If your work for the government involves say drafting general regulations or standards that affect an entire industry, this post employment restriction won't apply. But in a case like this Monet show, where Neil's been involved in a matter between specific parties, Diane's museum on the one hand, and the National Endowment for the Humanities on the other, Neil can't represent any person or organization back to the government on that same matter. And that's forever, as long as the matter continues.
That's perhaps the most far reaching post employment restriction affecting special government employees. But there are some others you should be aware of. Talk to one of the ethics officials at your agency before you leave your government position. Their job is to help, even if questions arise long after you've finished your government service. Serving as a special government employee can be a truly rewarding opportunity, a chance to play an important part in the workings of our government, as long as you understand the rules and regulations regarding conflicting financial interests, appearance concerns, the use of inside information, limitations on outside activities, restrictions on seeking employment, and post employment activities. If you understand what you can and can't do under the laws and regulations that govern your employment, you'll always be able to make the ethical choice.
End of video.
MR. CONDRAY: Did anyone spot the ethics lawyer in the video? No I was not in the party. I was sitting at the table at Al's consultation briefing on frame stress. I was portraying another individual because frankly if someone gave me a lecture on frame stress then I would understand very little of what they were talking about.
MR. BLAIR: Isn't appearing in the video a conflict of interest?
MR. CONDRAY: Only if I get paid for it. A brief digression, I also do community theater in the Washington area, and I couldn't claim that as a SAG credit, for example, if I wanted to try to join the Stage Actors Guild.
As touched on in the videotape, the first thing that most Committee members see in terms of the ethics program is the financial disclosure report. The financial disclosure form that the members receive are used for both the member and for the government, because it's often useful, particularly when entering into something like this, to actually become aware of all of the financial holdings that you have. And from a government's perspective it enables us to review and identify potential conflicts of interest. The conflicts of interest are then resolved, hopefully, primarily through recusal or where appropriate a waiver. And as the videotape also mentioned, there are certain conduct rules that apply during and after someone's service as a special government employee.
In terms of a financial disclosure, all the Committee members who were appointed as SGE's are required under the ethics and government act to file a financial disclosure report. That's what Al Dover was working on in one of the video's first scenes. The information that's used to determine the matters that a Committee member would have to recuse from under 208, and he threw that, you'll hear ethics people throw a lot of terms around, because well, we're subject matter experts, and I'm sure you know as subject matter experts, terminology comes with the field. 208 is the conflict of interest statute that bars all government employees, including special government employees, from participating personally and substantially in any matter that could affect the financial interests of the employee or those attributed to the employee, which includes spousal interest, those with minor children, or employers. It wasn't mentioned in the statute but occasionally we have a situation where an employee offers to divorce as a means of ridding themselves of a conflict, we don't generally advocate that as a step, although it does remove your spouses interests from those that are imputed to you under the statute.
208 applies to matters of general applicability that would affect those interests as a discreet and identifiable class. For example, in terms of developing standards for the transmission of medical data, it is a matter that would affect the broad class of health programs, but it wouldn't have a specific affect on an individual health program except as a part of that larger class.
That's to be distinguished from you, the narrator also talked about specific party matters, grants, contracts, investigations, proceedings, matters that adjudicate the rights or responsibilities of individual parties. And in fact I saw a visible sigh of relief go around the table when he mentioned that. Because as you know this Committee doesn't generally consider issues that would focus on the interests of a particular employer or party. But if a rare situation comes up that's has the color of a general matter but actually because of the narrow number of, the small number of entities that it would affect, start to look like it may be affecting a specific party. At that point in time I will ask you to do what will be a recurring theme throughout my presentation, which is talk to your ethics official, talk to Marjorie as the Committee officer or call the ethics office and we'll be able to walk you through a situation to see if there is a problem. And if there is a problem to resolve it. Resolving problems in advance is always preferable.
They also talked about disqualification or recusal. That's essentially because the ethics law prohibits you from participating, that's essentially not participating, in any way, shape or form. It's not just not participating in a vote, it also involves not participating in offering advice or consultation during the process. Because, obviously all of you are subject matter experts and your advice and counsel on a particular subject will be almost as important to people considering an issue as a vote. That would be considered personal and substantial participation.
The other thing that was talked on in the video, and that a number of you are also familiar with as a part of the appointment process, are waivers. The conflict of interest statute has a very broad reach, on its terms, there's no diminimus, which is a Latin term because we lawyers love Latin terms, which means interests that are too small to be worried about. The conflict of interest statute doesn't have those provisions on its own. Any financial interest in the matter is enough to require a disqualification. However, there are two different types of waivers that can be issued. There are regulatory waivers, where the Office of Government Ethics has decided, just as a matter of policy, that certain types of interests aren't going to be considered enough of a financial interest to raise the appearance of a conflict. For example, they've done this for stock in publicly held corporations of up to $15,000 dollars in value. Also for matters of general applicability, that standard rises up to $25,000 dollars as a diminimus amount.
There is also a special regulatory waiver for special government employees serving on advisory committee, saying that interest that arises as a result of an employment interest are not considered to be a significant financial conflict. The one cautionary note that I throw in there is that that waiver only goes for interests of salary and benefits and that sort of thing. If you work for a corporation and hold stock in that corporation, that would be considered a separate interest and we would have to resolve that using another provision.
There are also individual waivers for certain specific situations. An agency has the authority to grant an individual waiver to any employee, not just a special government employee, where the agency determines in writing that a financial interest is not so substantial as to affect the integrity of an employee's official duties. Those are actually fairly rare but they do occur from time to time. However, when they created the conflict of interest statute, a special individual waiver standard was set up for special government employees serving on advisory committees. That's because of the special role that advisory committees have in providing advice to the government. Because committees, their function is advisory only, and also because of the need to seek the expertise of the affected communities and the requirements under the Federal Advisory Committee Act that the Committee membership itself be balanced in terms of the interest, a separate standard was instituted. The advisory committee waivers can be granted where the need for an individual service outweighs any potential for a conflict of interest or the appearance of a conflict of interest. And a number of these waivers are issued particularly for matters of general applicability. The waivers are very rarely issued for specific party matters, however, for matters of general applicability, for most committees, including the work of this Committee, that type of waiver will suffice to cover virtually everything that a Committee member would be called upon to consider.
There are a few other criminal statutes applying to special government employees that I wanted to touch on. Some of them are fairly intuitively obvious and some of them are not. First one is one that is hopefully fairly intuitively obvious and that's 18 U.S.C. 201, the bribery statute. Special government employees, like all government employees, are not permitted to accept anything of value for being influenced in the performance of an official act. I think we can all agree that that's probably a good idea to prohibit that sort of thing and that one's not one that will cause a lot of controversy.
There are also representational restrictions. These were touched on in the videotape, under 18 U.S.C. section 203, a special government employee may not receive compensation for representational services back to the agency or court for any specific party matter that the special government employee personally or substantially worked on. There's also a similar restriction for prohibiting acting as an agent with or without compensation before any agency or court in connection with a specific party matter that the special government employee worked on. As a practical matter for this Committee, that's not generally going to be a problem because you don't consider a large number of specific party matters.
There was another restriction that was referred to in the videotape that I just wanted to clarify. If you'll remember Al Dover was asked to come back to the Navy and talk about another matter and he said that he could not do that. However, that was because he had worked more than 60 days in a calendar year, so that's not a restriction that would generally apply to members of this Committee. If, however, you serve on a large number of Subcommittees, and you find your calendar filling up, you may want to touch base to see what restrictions would also apply to you in that situation, because some of the restrictions for special government employees that pass the magical 60 day calendar limit, there are a couple of other restrictions that do apply.
There's also a post employment provision that was touched on briefly in the videotape. Again, the primary post employment provision applies to specific party matters, so that's not something that would typically be a concern for this Committee because the Committee is not going to be called upon to deal with those matters. The only other provision that I would want to bring your attention to, also, would only affect that poor unfortunate Subcommittee member who's service runs past 60 days. There is a provision for certain senior employees who's service runes past 60 days barring them for one year after they leave the agency from making a representation back to that agency. If you think that that might apply to you, again, the theme is, talk to the Committee officers or talk to the ethics officers.
There were some talk about the teaching, speaking, and writing restrictions. As special government employees you may receive compensation for the teaching, speaking, and writing that you do in a personal capacity, in fact that's true for all government employees, not just for special government employees. However, you may not receive compensation for teaching, speaking, and writing that relates to your official duties. That term is defined under government regulations as being things that you do as far as party or official duties or that draws on non-public information that you've acquired through Committee membership, where the invitation was based upon your membership on the Committee, or, under certain rare circumstances, if the invitation is from a source that would be substantially affected by the performance or non-performance of your official duties. Now again, that would be substantially affected generally speaking as some sort of unique or distinct way, not in terms of substantially affected by something on a broad matter of general policy. If you're not sure about a specific situation, once again, I will like a parrot up here, I will repeat, talk to the Committee officers, talk to your ethics official.
DR. LUMPKIN: Can I just ask a question right here? When you say compensation, does that include reimbursement for travel expenses?
MR. CONDRAY: Compensation does include reimbursement for travel expenses for most teaching, speaking, writing. Any other questions?
MR. BLAIR: I do have a question. If we are asked to present, let me see if I can describe this. We wind up making a lot of decisions with respect to standards. If we are invited to educate a particular standards organization, and normally the federal government doesn't pay for us to do that, like a tutorial. If there's an honorarium paid for that which helps defray our hotel costs for attending that and doing the tutorial as part of NCVHS, you might say in a sense it's educating the public on what our recommendations are. Is there ethics problems with that?
MR. CONDRAY: Well, my answer, typical for an attorney, would be maybe. The questions that I would ask in a situation like that are is this something that the Committee is assigning you to do, or is this something that you're receiving an offer independently of? It may be that the Committee, because the Committee wants to get the word out about some of the standards, the recommendations that it makes, and in that particular sense it may be that the government would want to designate you as an official spokesperson and send you out there. You would want to talk to the Committee officer in that situation. Also, particularly obviously, the assumption is that such a presentation would not involve non-public information, that it would only involve matters that the Committee has already made public, decisions the Committee has already made, now the Committee is trying to get the word out. In those situations I would recommend that you talk to the Committee about having that done as part of the duties of the Committee or also in a particular fact situation to see if there's an exception that would permit you to go on that. But as a general matter, I would touch base with the Committee officer and with the ethics official.
DR. LUMPKIN: I think on this particular issue we're going to need to get some clarification, because members of the Committee are asked to speak about issues related to standards, HIPAA and all those sort of other things, and it's not generally, many of us are asked to do that without payment but do get covered for the cost of flying and airfare and frequently it's not an honorarium, it's just a flat reimbursement, submit fees. And I think that's it's going to be very cumbersome if we have to do that for every single invitation.
MR. CONDRAY: Now I will say that the government has the authority, that even if the government has no travel budget to send people out, the government has the authority to designate you as traveling on official business and the government can accept the travel reimbursement that's offered and that way the individual employee will not have to eat the cost of travel out of pocket. But yes, I will certainly work with the Committee officers and get more specific word to you on that specific issue, because obviously that's going to one that's going to be of interest to the Committee members.
Having run through that issue, I'm going to accelerate through a couple of other issues, in part because these were also covered on the videotape. Gifts that are offered because as a result of your Committee membership may not be accepted. Generally speaking, however, that's going to be a rare situation. Gifts that are offered to you, there are a number of exceptions. Small gifts offered on the basis of a personal relationship or related to business relationships of your outside employment interests is not going to be a problem, and typically that's going to be a fairly easy distinction to make. If you receive something that's written to you and the title of your outside organization and is couched in terms of the relationships with the outside organizations, that's going to be a cut and dried situation where you can go to a particular conference or something like that, or accept a basket, for example, at a holiday season without being overly concerned about the ethics restrictions.
Even if there is a gift that's sent to you, and I can tell you that in working in government for 15 years no one has sent a gift to me because of my official duties, but on the off chance that somebody is so impressed with the work that you do on the Committee that they send you some sort of token of their appreciation of the work that you do, if that token is worth less than $20 dollars you can accept that without even calling the ethics official because we don't think that anyone can be bought for under $20 dollars. Although, I will note that that only applies if it's not a cash gift. If they send you a check for $19.99 check with your ethics official because that check is probably going to have to go back. It's considered bad form to accept cash from outside sources for your official duties.
In terms of, you can't use a government position for the private gain of yourself or for someone else, so that you may not use your position to imply that the Committee or the government endorses your private activities. If you do charitable fundraising on the outside you certainly may do that as a personal activity, but you're not permitted to personally solicit funds from someone who is doing, who has business directly before the Committee. And of course, you're not permitted to disclose non-public information.
There are some impartiality standards that were referred to in the videotape. The impartiality standards typically, however, go to specific party matters and not to matters of general applicability and so won't really apply so much to what this Committee is doing. However, if there is something that as I said starts to look narrowly focused and you're concerned about a situation where a reasonable person might question your impartiality, it never hurts to call the Committee officer and to call the ethics people, just to double check it as a precaution.
Now I do want to touch on something that's not on the videotape that many of you may have received a questionnaire about, within the past year, and that's activities with foreign governments. Under the Constitution, the emoluments clause of the Constitution, while you serve as a special government employee you may not have an employment relationship with a foreign government. That sometimes, for some countries, includes foreign public universities or government owned companies, depending on the degree of control that the foreign government exercises over that entity. There is a, the State Department has listed some exceptions, the Foreign Gifts and Decorations Act, generally you may not accept gifts from a foreign government unless that gift is worth less than $260 dollars. If you're not sure about a specific situation, again check with the Committee staff or with the ethics division. We do keep a running list of outside entities that we have made determinations on as to whether they are considered controlled by a foreign government or not, and so that's an ever expanding list as the diversity of interests of our employees comes more into play.
DR. LUMPKIN: Can I ask a question, because with the increased globalization sometimes, if you work for Chrysler, which is owned by Daimler, it's a German company --
MR. CONDRAY: Do you know how to pronounce Daimler Chrysler in German? The Chrysler is silent.
DR. LUMPKIN: Would that fall under this clause?
MR. CONDRAY: No, that's a private, a German company, so that's not considered an entity of the German government, under the emoluments clause it goes to foreign princes and other such things, not to --
DR. LUMPKIN: So people who are working for a private company don't have to try to dissect out the corporate veil.
MR. CONDRAY: That's correct, that's correct. Now where you get into interesting situations and I won't digress too much on this, but where you get a situation like Airbus or something like that where a company is in fact partially or wholly held by the government, and those questions become fairly tricky.
MR. SCANLON: That includes public universities.
MR. CONDRAY: Yes, and also public universities, now there are sometimes where public universities are not considered entities of the foreign government. We look to see how much control the government exercises over them, so that's a question that would be determined on an ad hoc basis.
The one last restriction that I want to talk about is Hatch Act or political activities. The Hatch Act restrictions, they're restrictions for all government employees in terms of political activities that they can do. However, for special government employees, they only apply during the period of any day during which the special government employee is actually performing government business. That means that if you're attending the meeting today, for example, from 8:00 to 1:00 in the afternoon and the meeting adjourns, of course you guys are not going to adjourn until 1:30 so 8:00 to 1:30, if at 3:00 this afternoon you decide to skip your flight home because you don't think it's going to snow, you're going to attend a political fundraiser and solicit political contributions from the attendees, you may do that because you are at that point off the clock. There is a handout list of activities while you are on the clock that you may or may not do based on the Hatch Act, and so in the unlikely event that you decide to make a cell phone call from this room during the Committee meeting, then you would want to refer to that list to see whether or not you would be getting yourself into trouble. Although if someone made a cell phone call while I was speaking I for one would be fairly offended by it.
I would like to conclude, I see from my watch on the desk that the word 10:00 straight up. I'd like to thank you for your time and attention this morning. We will look at that one issue having to do with the expenses in terms of teaching, speaking, and writing that may relate to the Committee business to see if we can come up with something that would draw lines about that.
The one other note that I would like to reiterate from earlier is the ethics training sheet. If you could make sure once again to sign that and give that to Marjorie before you leave, doing it perhaps on your next break would be a great way to start your break. And given that last word, I will let you start the work of the rest of your day and I'd like to thank you for being such an attentive audience and thank you for the questions this morning.
DR. LUMPKIN: Well, thank you, obviously we all want to be as ethical as possible.
DR. CONDRAY: John, I do think we have a question here.
DR. LUMPKIN: We have a question from, I guess before we ask this question, if I'm involved in my current job of working with a foreign government like Wisconsin, does that apply?
PARTICIPANT: You can't accept cheese, I think.
MS. HANDRICH: My question is, is everything that you said covered in the written materials that you provided to us? I notice --
MR. CONDRAY: And then some, yes.
MS. HANDRICH: I wondered whether or not the document that you were reading from, which seemed to have highlighted some of the key points, could be made available to us, or is it the very same information?
MR. CONDRAY: It's really just bullet points taken out of that.
MS. HANDRICH: Nothing new.
MR. CONDRAY: Right, there's nothing new in here specifically except for a couple of my references to the videotape, which wouldn't add substantively to your understanding of the ethics provisions.
MS. HANDRICH: Alright, thank you.
MR. HOUSTON: If we're asked to speak and it's obviously approved or there's not an issue with it, I'm assuming it's also ok to identify the fact that we're on this Committee.
MR. CONDRAY: Well, yes, you can refer to the fact that you're on a Committee as part of your CV, there's no problem with mentioning the fact that you're on there. What you can't do, for example, is list yourself as John Houston, Esq., member, NCVHS. That would be considered to be use of an official title. But you can certainly include the fact that you're on the Committee as a part of the CV as long as it's not given any more emphasis than any other part of your professional background.
DR. LUMPKIN: And the operating rules for the Committee does have officially identified spokespersons for the Committee on specific subjects, for instance, Simon on issues related to standards and so forth.
MS. GREENBERG: I just want to thank you very much, John, and also reiterate that if the Committee would like to have a closed door session with, a non-public session with John to ask about specific issues, we can definitely arrange that like at the beginning of a meeting, so just let me know. Otherwise as he said, specific issues you can bring to my attention and I'll discuss them with John or another member of the ethics panel.
MR. CONDRAY: Yes, I would hand out business cards except I don't have them yet.
MS. GREENBERG: And where can we see you on the stage when the weather clears up?
MR. CONDRAY: Anyone wanting to see me on the stage would have to approach me, of course, not during the course of my official presentation.
DR. LUMPKIN: Thank you very much. Ok, we're going to move on to Populations Subcommittee.
DR. MAYS: At the last meeting there was a letter that was approved by the Executive Committee that discussed some of the concerns we had about the budget as it related to the activities of NCHS, specially for the NHIS. In the letter we talked about, not the concern about the budget as much as concern about what budget might do relative to the NHIS. That letter was approved and in our meeting yesterday, we came up with a paragraph that we wanted to also include. So I'm going to put this paragraph before you and see if it can be included in the letter.
The Population Subcommittee has recently been holding hearings on the collection of population based and administrative health data for ethnic and non-English speaking populations. Such data for both states and the nation are critical for examining health disparities, a major goal of HealthePeople of 2010. Adequate funding for NCHS, a leader in the development of these data, is essential to address health disparities. The Subcommittee will forward final reports and recommendations on these areas in the future.
MR. SCANLON: And that would be added, Vickie, to the February 15th letter.
DR. MAYS: Right, the letter of February 15th it would be added to that.
DR. LUMPKIN: It's been moved by Vickie that the previously mentioned language be added to the letter that was to be sent out regarding funding for NCHS, specifically the NHIS. It's been moved, it was seconded by Don, is there further discussion on that motion?
DR. COHN: Where in the letter does it go?
DR. STEINWACHS: I think it was the last paragraph of the letter was where --
DR. MAYS: It's the last paragraph of the letter.
DR. STEINWACHS: Sort of summary section of the letter.
DR. MAYS: You actually have the letter as part of the Executive Subcommittee, no you do, and you have until, we thought it was gone but you have until Friday, so we figure since you have until Friday we can get this extra paragraph in.
DR. LUMPKIN: Ok, it's been moved and seconded, seeing no further discussion, all those in favor signify by saying aye.
COMMITTEE: Aye.
DR. LUMPKIN: Opposed say nay. Any abstentions? I see none, it passes.
DR. MAYS: I don't think we need a vote on this next item, if you change our charged, we changed our charge, do we have to vote on that?
MR. SCANLON: Just report it.
DR. MAYS: One area that we discovered was not in our charge, the Population Subcommittee charge was the area of language, and we've actually been working in this area in terms of our concern about the translation of instruments, we sent a letter earlier about SCHIP, making sure that they would also include issues like primary language, so we just discovered it wasn't in our charge so we had a vote which was unanimous to be able to include attention to language in our charge.
DR. LUMPKIN: Ok.
DR. MAYS: Ok, and otherwise I'm waiting for my letter. Just so that people know, yesterday we passed out the recommendations. Maybe you all got them I'm not sure.
DR. COHN: I actually want to thank you from going from 61 to six. Tremendous effort and I was very impressed.
DR. MAYS: I had the best of the Committee helping me to do that.
MR. SCANLON: Well, actually Vickie, I think this is chapter one.
DR. MAYS: I was going to say, part of what we did was we picked out what we thought were the most compelling and the others you will see in a different iteration at another time. So, but just quickly, what I would like to do is actually to thank the Populations Subcommittee, because they worked quite hard yesterday at helping to clean up the letter, come down to these six recommendations, and to make a series of suggestions as to how our process is going to go before we come back here in June. So I just want to thank them all, and the new people who were as if they had been there all the time.
DR. STEINWACHS: We thought it was the superb leadership we had.
DR. MAYS: Well, thank you very much, it was a team effort.
DR. LUMPKIN: While we're waiting for the letter can we perhaps table the rest of this discussion until we get that and then handle the NCVHS report that we discussed yesterday?
DR. COHN: Should I make a motion on that?
DR. LUMPKIN: On what?
DR. COHN: That the NCVHS, I thought you were talking about the report.
DR. LUMPKIN: The report, yes.
DR. COHN: I was just going to make a motion on the report.
DR. LUMPKIN: Please.
DR. COHN: Ok, what I was going to do, I think as we discussed yesterday, to move that we approve the report with editorial revisions to be submitted to NCHS and that further work on the report be authorized to be handled by the Executive Subcommittee, recognizing that there are certain parts that are not there yet.
MR. BLAIR: Second it.
DR. LUMPKIN: It's been moved and seconded that the report be adopted with the following provisos that editorial comments should be supplied to NCHS or to Marjorie, our secretary, for inclusion and that the final version of the report be adopted by the Executive Committee with the assumption that there are no significant changes from what was adopted. Is there further discussion on that? All those in favor signify by saying aye.
COMMITTEE: Aye.
DR. LUMPKIN: Opposed say nay. And that date would be Monday, for getting those editorial changes in. Monday, the 3rd is it?
MS. GREENBERG: I want to thank Susan Canaan, too, for the excellent job she did on the report.
DR. LUMPKIN: Well, that's only because, we didn't think of doing it because her work is always excellent. Ok. Let's see, while we're then waiting, we're still waiting for the letter? Ok, let's move on.
We have an item on the agenda for organizational issues related to the NCVHS. I would like to just make one proposal that I would like to toss out and then suggest that this discussion, probably since we have so many new members, might be best held at our next meeting once the members actually have a feel for the function of the organization of the Committee. And that recommendation would be, and one I just haven't discussed with Vickie so if you don't like it we can just table that also, but it seems to be in functioning that the Quality Workgroup ought not to be placed underneath the Populations Committee, but rather as a freestanding Subcommittee. The Quality Workgroup, having that as a freestanding Subcommittee rather, it seems a little bit artificial to have it underneath the Populations Committee, because there are people who want to be members of that Subcommittee but not members of the Committee itself. So I want to throw that on the table for discussion at the next meeting.
DR. MAYS: Ok.
DR. LUMPKIN: Any other things we want to toss out as ideas for, on the table for discussion at the next meeting? Organizational thoughts?
DR. MAYS: Yes, we wanted to talk about the last meeting where I brought up some of the overlap that exists with Populations, particularly as we try and have the Committee focus on population health as an issue, and I gave a series of issues that I think are overlap. But the issue of how to do it is really I think the big issue, and Simon had a suggestion that I thought was a very good one to consider. He gave me the list of issues, for example, that his Committee is currently considering, and then I have a list of issues that we're currently considering. And I think the best way probably to do this is for us to just sit down and see where there's overlap, and where there's overlap to see if it's something we determine we need to have a hearing about, that the way we would do it is probably have some subset, we probably don't need to have the whole set of our two Committees come together. It may be that if I'm holding a hearing his subset might come, if he's holding a hearing, our subset might come, and build the questions that we need in order to take care of our agenda on that particular topic into his hearing, and then we would also have their expertise on how to interpret what we hear, and then vice versa. So I think that may be the best way maybe to deal with some of the overlap that exists with the various Committees.
I think it will work, I don't know if there were other suggestions of how to do this process wise. There's what I see is a clear willingness on the part of all the chairs, but it's sheer time on any of our part to be able to do it, and when we have activities in which we're going to be engaged already, this may be the best way to try and then get in that work. And also then it gives us some consistency, we're consulting with each other on where it is an area that we know part of it and they know part of it.
MR. SCANLON: Vickie, is this what we're waiting for everyone to get?
DR. MAYS: No, we're waiting for the actual letter, the full letter, I mean if you don't want to go over the letter, if you feel the letter was ok from yesterday, but we kind of cleaned it up a lot, so that's what we're waiting on, but otherwise, these are the recommendations for it.
MR. HOUSTON: Was the letter being printed, is it going to be just redlined so we can sort of see where the changes all were?
DR. MAYS: It's shorter, so actually I think we can go through it faster.
DR. LUMPKIN: Well, I think that in regards to those cross cutting issues, an additional approach that we need to discuss and we have done this more but now that we have new members, which are members who are interested in the work of a Subcommittee, they can't actually participate on, but they become sort of corresponding members, where they get the materials, they get the email, included in the list for the email, and that may also be a way to handle some of those cross cutting issues where you identify some of those individuals, not only to go to the hearings but also be involved in some of the internal working groups, workings of the complementary subcommittee without actually attending the meetings, so that they can keep track of the issue.
DR. MAYS: So what you're saying, as we work they're involved but that they're not necessarily on the Subcommittee, so, for example, in terms of coming to the Subcommittee, because that's where the problem exists is really when we're here, the ability to be able to come to the Subcommittee.
DR. LUMPKIN: Right, it would just be, it's sort of an enhancement on your suggestion.
DR. COHN: Well, I actually remembered the comments you made and I'm actually just thinking of the attempts we made to do that around Privacy, to make sure that Privacy was infused into everything. I'm not sure that I ever thought it worked very well, only because it was a little diffused and what you're really getting is a whole bunch of additional emails that you oftentimes get out of context and don't quite understand what's going on. It may be that if we indeed identify focused areas where to achieve the goals of various Subcommittees, that we need to sort of collaborate on, that they may work best by having sort of joint hearings, and indeed, I think we've done this before on specific areas. And indeed, we'll be talking about doing one around enforcement between Privacy and the Subcommittee on Standards and Security. So I think the issue here is not that we have people that are sort of not active but are interested in all aspects of the Committee, but more that there are specific areas and issues that we really need joint action on to come to a recommendation and understand the issue.
DR. LUMPKIN: Well, but it sounds to me like what's being raised is almost a separate workgroup on that issue, that really is appended underneath two Subcommittees.
DR. MAYS: It's interesting because I think it's a little less complicated. I think there's some pieces of work that have fallen between the crack to some extent, like we may need some help on, if we think that there's issues on HIPAA and the collection of data on race and ethnicity. We know part, they know part, it's kind of like we just need to find the time to consult, and if the consulting is simple enough that we don't need to have a hearing, we clearly will do that. Because it may be that all we have to do is this series of questions and they can answer those questions, or it may be that for a particular meeting we would switch around when the Committees met so that we could go there and talk with them, and then it may be over with. Or it may be that if they can't answer it, then what they would say is we should probably hear some testimony on that and then we can help you formulate the recommendations. That's what I think.
DR. LUMPKIN: My only concern with that approach because it's so informal is that with no one having the responsibility, let's say in the Standards Committee, of actually dealing with that issue, it can continue to be dropped because you may deal, someone may be interested in that and they go to the hearing but they may not be involved in the process of developing a recommendation. And I don't know if it needs to be as formal as a Subcommittee but certainly that there ought to be clearly identified individuals in both of the Subcommittees who have agreed to work on that particular issue, so that staff knows who to contact, if there's an Institute of Medicine Committee working on the issue, they would know who to invite. So I'm looking for something that isn't a full blown structure but something a little bit more structured than just --
DR. MAYS: Ok, I have another suggestion then. Suppose that at the point that we need to do this work we go to Marjorie and we say we need you to make us a little ad hoc in some kind of way, and that's what we do and it's taken care of as to who's identified and who's agreeing and who's committed, and then it's kind of under the rubric of the Executive Subcommittee that the organization of it is known and they know also then when we finish and then we disband ourselves. I mean I don't want a big structure.
MR. SCANLON: The other way to do it would be to just be to designate a, depending on what the issue is, ask the other Subcommittee to designate a liaison, depending on what the issue is, so you know a person to contact.
DR. LUMPKIN: I think what we're doing is we're outlining a series of alternatives, and it depends upon the issue and how involved the issue may be. It may be as simple as a contact between the Subcommittee chairs. It may involve assigning a liaison. Or if it's even more involved work it may involve actually doing an ad hoc group to work on the issue, maybe have one or two hearings, come up with recommendations and then disband. So I think we're kind of working on a series, a menu of options to address the issue.
DR. MAYS: Ok. And then it's, just so that I'm clear so that I know where it's pointed towards in the staff and what have you, it's like it goes under Executive Subcommittee. Ok, alright.
MS. GREENBERG: Just some organizational issues, you said you wanted to talk about the next meeting, organizational issues for the next meeting, this morning the Subcommittee on Privacy met and Mark will probably bring this up in his report, but the issue of security and it being kind of bridging between Privacy and also currently where located in the Standards and Security. So I think that would also be an organizational issue to discuss at the next meeting.
DR. COHN: And as I was going to say, I'm currently canvassing members that I know have interest in the security area and hopefully we'll have some recommendations that we can bring actually to the Executive Subcommittee whenever they meet next with the idea that we can come to some sort of resolution on how that area should be handled.
DR. LUMPKIN: Good. So we have some items to talk about, we'll raise them at the next Executive Subcommittee, come back with some concretized proposals and bring it before the Committee in our June meeting. Ok, we're to the letter.
DR. MAYS: This is the right letter, the wrong set of recommendations.
DR. LUMPKIN: So we're just considering page one through three, and then the --
DR. MAYS: Yes, and then the handout from yesterday. I will read the letter.
For almost four decades the National Committee on Vital and Health Statistics, NCVHS, has monitored and advised your office on important initiatives to improve population based data for racial and ethnic minorities. The Committee first addressed the severe inadequacies in health information for racial and ethnic minorities in the 1960's. Most recently, the NCVHS established a Subcommittee on Populations to focus on A, population based health data concerning the U.S. population generally, B, data about specific vulnerable groups within the population that are disadvantages by virtue of their special health needs, economic status, race and ethnicity, language, disability, age, or area of residence.
The Subcommittee on Populations has made moderating the impact of the Office of Management and Budget's changes in category for race and ethnicity a priority. The Subcommittee works to assess the implication of these changes for tracking longitudinal patterns in the health of subpopulations. When appropriate, recommendations for using these new standards have been submitted to your Office and relevant federal agencies. The Subcommittee also serves as a public forum for discussions on the use of race and ethnicity categories in health data, and whether the data collected by federal agencies are sufficient to determine whether health disparities exist in racial and ethnic groups in support of efforts to eliminate those disparities. In February 2002 the Subcommittee began a series of hearings designed to investigate the collection and use of data on racial and ethnic groups by data systems funded and maintained by the Department of Health and Human Services.
Any? Yes?
MR. HOUSTON: One point. In the first paragraph under B where you talk about data about specific vulnerable groups within the population, you identify six or seven different vulnerable groups, and then you go back throughout the letter then to talk about racial and ethnic groups. I guess my question is do we want to either define racial and ethnic groups to be that larger class or do we want to define, use our term to be vulnerable groups throughout the letter? The first paragraph you talk about a larger group of things you're worried about and then you sort of fall back to the use of the term throughout then racial and ethnic groups for the rest of the letter, and I'm wondering whether you somewhat wanted to make that consistent throughout.
MR. SCANLON: Well, the rest of the letter doesn't deal with most of the topics, it deals with primarily with race and ethnicity --
DR. MAYS: So are we ok?
MR. HOUSTON: I'm just thinking that when you talk specifically about, talking about a Subcommittee on Populations and talking about these different vulnerable groups and then we sort of back away from it for the rest of the letter, I'm just questioning what's really the focus I guess.
DR. MAYS: I think that what happens afterwards is that the categories are pretty specific to race and ethnicity. I mean I guess I can say this is our charge, just so that they know that's our broader operating, more recently the NCVHS established a Subcommittee with the charge of, if that will help, then it will know that this is everything we do but that below, the next paragraph is that we're only focusing on a specific thing.
So I think the change then would be establish a Subcommittee on Populations with the charge of, we'll take out to focus on and make it the charge of. Do you think that will take care of it?
MS. GREENBERG: With the charge of focusing on --
DR. MAYS: Oh, I'm sorry, with the charge of focusing on, ok. So that says this is everything that we do and then we'll limit what this particular letter is about, unless you want me to kind of give, I think the next thing says it's a priority.
DR. LUMPKIN: I think it works that way.
DR. ZUBELDIA: Vickie, at that list at the end of the first paragraph, I would take out the and in race and ethnicity and just make race, ethnicity, language, disability, and then that puts more emphasis later that the subject matter is race and ethnicity.
DR. MAYS: Ok. We can say race/ethnicity, that's kind of standard --
DR. LUMPKIN: No, I think that that's --
DR. MAYS: Race, ethnicity --
DR. LUMPKIN: No, race, --
DR. MAYS: No, in here that's right. Ok, no problem. Any other comments? We can go on? We'll start on paragraph three.
The Subcommittee has held three hearings, received input at its regularly scheduled meetings, and gathered materials on the collection and use of data on the health and vital statistics of racial and ethnic groups on whether the data currently collected in federal systems is sufficient for the identification of the health disparities of racial and ethnic groups in the United States and the territories. The first hearing held in February 2002 included representatives of several of the departments population based surveys, provider based surveys, and administrative data systems in addition to users of these data.
At the second hearing, held in September 2002, a number of American Indians and Alaska Natives discussed their needs and concerns about health and vital statistics data and the ability through current data collection mechanisms to determine and assess health disparities in the population. The third hearing, held in November 2002, focused on the collection and use of vital statistics and health data on race and ethnicity at the state level and whether the data helps measure disparities in racial and ethnic populations. At this session the Subcommittee heard from representatives of state agencies, professional organizations, and federal agencies involved in the collection of state health data and vital statistics. The Subcommittee intends to hold additional hearings with such groups as Native Hawaiians, Asian and Pacific Islanders, and on topics such as primary language and the use of translations in data collection materials.
In general the Subcommittee found that the federal government has taken a number of positive steps to improve the collection of data on race and ethnicity that makes it possible to monitor the health care quality of all populations. In particular, the Office of Management and Budget has issued sets of guidance such as the guidance on the aggregation and allocation of data on race for use in civil rights monitoring and enforcement, and provisional guides on the implementation of the 1997 standards for federal data on race and ethnicity.
The second guidelines provide health agencies multiple options for bridging the multiple race responses under the new federal standards for the collection of data on race and ethnicity. Despite these multiple options, there appears to be need for greater instruction on how to present multi racial data, which census denominators should be used to calculate race, how to collect data on subgroups, what other data should be collected, e.g., social economic status, primary language, and how to code subgroups such as Cape Verdian's, Brazilians, Nigerians, and others.
Yes?
MR. HOUSTON: At the end of the first paragraph you read, there needs to be a period after materials. And also, in the sentence that sort of spans the two pages, to determine and assess the health disparities, isn't that populations since there's two different groups that you're discussing?
DR. MAYS: Just tell me where you are.
MR. HOUSTON: The sentence that spans the two pages.
DR. MAYS: Yes, I agree. No, I just had to find where you were, I agree.
MR. LOCALIO: Vickie in the third line do we want to make the word helps, help? Line three of the second page.
DR. MAYS: Thank you. Ok, I'm going to go on.
MR. SCANLON: Vickie, one more, beginning of the third paragraph, when you're sort of laying the background for how the Committee made these conclusions, the Subcommittee has held three hearings, received input at its regularly scheduled meetings, you also review previous reports and recommendations, and then you've added materials.
DR. MAYS: Yes, so we should put that in. We will just put in reviewed previous materials, previous Subcommittee materials --
MR. SCANLON: No, it was more than that, it was various reports on improving race and ethnicity data, I can give you some wording.
DR. MAYS: Ok, thank you.
MR. HOUSTON: One other point. In the second paragraph you read, which is on the second page, at the bottom you talk about how to collect data on subgroups, what other data should be collected, e.g., socioeconomic status and primary language, do you want to sort of maybe, towards my earlier statement about the different vulnerable groups on the first page in the first paragraph, shouldn't we try to mirror those groups with trying to collect data against those types of groups?
DR. MAYS: This is specifically on race and ethnicity, so the other vulnerable groups, we actually have taken care of at different times, so we're not actually do all that for all the other groups, so no problem. Anything else? Thank you.
MS. GREENBERG: I just wanted to mention that concerning this last paragraph that you read on the very end of it that there is an addition to, of course, the rather short guidelines for capturing the racial and ethnic groups identified in the OMB guidelines. There is a very extensive set of guidelines which would include these groups and many, many others that are, it's a standard that's maintained by CDC and is in both X-12 and HL7, so I'm kind of concerned that this gives the impression that there isn't a way, a standardized way to collect information on these subgroups. I mean there is although it's extremely detailed.
DR. MAYS: I think the collection is there is the issue of the categorization and that's I think sometimes what the problem is. What we heard from the states, and also --
MS. GREENBERG: Where they should put them, you mean, if that collapse back --
DR. MAYS: Exactly.
MS. GREENBERG: There's a way to code it --
DR. MAYS: Maybe it's not code, it probably should be aggregate, and then maybe that will make it clear, because you're right, code is formal here so it probably --
MR. SCANLON: Is it definition for those groups?
DR. MAYS: They know the definitions but it's the consistency of when you aggregate some people put them in one category and some people put them in another category in terms of race and ethnicity, so that's the problem. I do think that aggregate is probably more accurate and it then does not seem disparaging to --
DR. STEINWACHS: How to aggregate into the racial and ethnic subgroups.
DR. MAYS: How to aggregate into smaller, how's that?
DR. LUMPKIN: That's disaggregation.
MR. SCANLON: Larger.
DR. MAYS: Larger, the other way. I'm doing smaller but it's larger. Which side are we on now? Aggregate into larger --
DR. STEINWACHS: I'd bring back the racial and ethnic, I think, so they know that's the purpose of trying to --
DR. ZUBELDIA: The problem is to use the existing coding structures to achieve that aggregation.
DR. STEINWACHS: The translation.
DR. LUMPKIN: Which would be to essentially have a standardized way to do aggregation.
DR. ZUBELDIA: So there you can say that, how to use the existing coding structures to aggregate in a standardized way.
DR. DANAHER: What you're talking about is the methodology, right? Standardized methodology for aggregation of --
DR. ZUBELDIA: I think you need to point out that there are --
DR. MAYS: Yes, it needs to be, that's, yes, that's the problem.
DR. ZUBELDIA: That there are existing coding structures but not for aggregation.
DR. MAYS: This including structures in which they're not consistent in how they aggregate to the larger group.
DR. LUMPKIN: And maybe the way to phrase that would be primary language and standardized aggregation methodology for subgroups such as Cape Verdians, Brazilians, Nigerians, and others.
DR. MAYS: No, we don't want it inside the bracket, because that's what other data should be collected. What we're --
DR. LUMPKIN: Comma, and --
DR. MAYS: Oh, I see, I'm sorry --
DR. ZUBELDIA: Comma and no and because you have three things that meet here, there are several things, how to collect data, whatever data should be collected, how to aggregate data, and how to code the subgroups.
DR. LUMPKIN: It's not the coding, it's the aggregation, it's the standardized aggregation.
DR. MAYS: I'm sorry, I was --
DR. LUMPKIN: Standardized methodology for aggregation --
DR. STEINWACHS: Of subgroups into racial and ethnic --
DR. LUMPKIN: Of subgroups such as Cape Verdians, Brazilians, Nigerians, and others into racial and ethnic categories.
MS. GREENBERG: Broader racial and ethnic categories?
DR. LUMPKIN: Yes, into larger, there's value associated with the word broad, we don't want to imply that they're narrow groups. Broad cultural as far as backgrounds.
DR. MAYS: Ok, we're larger. Ok, alright anything else before we move on? Thank you.
The Subcommittee has heard a number of consistent concerns about the compelling data needs in American Indian/Alaska Native populations, for example, that suggest that we should communicate with you at this early stage of our process. While we intend to prepare a series of reports based on our hearing, the testimony that we have received at this point, coupled with a review of the Committee's past recommendations to your office and other federal agencies, convinced us to share what we have heard in support of the enormous efforts underway at DHHS to eliminate health disparities in racial and ethnic minorities, and to improve the health of all people.
Similarly states presented the Subcommittee with a number of unique dilemmas that they encounter in the interface of data collection reporting requirements on race and ethnicity. States with diverse ethnic populations need a better system for categorization and guidance from the federal level. It should be guidance at, or is it from? Alright, should I stop here?
DR. COHN: Actually I just have a question, the first sentence of the first paragraph that you read, and I'm just not even sure you need it. I guess I'm sort of wondering, first of all I'm not sure about consistent compelling, la ta da ta da, but I'm just sort of wondering, do you think there's something significantly lost if you just remove the whole sentence?
DR. MAYS: We were just trying at an earlier point to say why are we sending you this before we have reports and what have you.
DR. LUMPKIN: I think, though, if I can take from Simon, I think the Committee, because we're going to send a separate communication on American Indians and Alaska Natives, so if we were to say the Subcommittee has heard a number of consistent concerns about the compelling data needs, consistent concerns about compelling data needs that suggest that we should communicate with you at this early stage of our process.
DR. MAYS: Ok.
DR. LUMPKIN: Does that work, Simon?
DR. COHN: Yes, I think that's fine.
DR. LUMPKIN: Anything else on those two paragraphs? Forging ahead.
DR. MAYS: In light of the testimony the Subcommittee received, NCVHS reviewed its past recommendations to the Secretary and other federal agencies on the collection and use of data on race to determine those areas that are in need of urgent attention. The ethnicity got lost. Additional interventions, guidance and funding will be helpful in ensuring that the collection of data on race and ethnicity and the health disparities of racial and ethnic groups can support and enhance the Department's efforts to promote quality health for all. We appreciate the opportunity to offer these comments. Our current recommendations are attached. At a later date we will forward recommendations on translation, HealthePeople 2010, American Indian/Alaska Native data, the territories monitoring health disparities at national and state levels, needed methodological research and data analysis, and dissemination.
Simon's already got his hand up.
DR. LUMPKIN: Go ahead, Simon.
DR. COHN: I'm actually just sort of wondering, we obviously haven't gone through the six recommendations but given that there are only six --
DR. LUMPKIN: Should include them in the letter.
DR. COHN: I think it's sort of, maybe at the end of this first paragraph you read, maybe have that paragraph then say, specifically we recommend, and then a final paragraph at the end.
DR. MAYS: Ok, so we don't do them separately.
DR. LUMPKIN: And that's particularly important because Marjorie pointed out that you enclose things in a letter but you attach things to a memo, and we would get into a debate that would last too long, so we're just going to eliminate that whole sentence.
DR. MAYS: Good training here.
DR. FITZMAURICE: On the paragraph at the bottom of page two, additional interventions, guidance and funding, I would suggest inserting from the Department. Are you asking for the Secretary to do something for the Department or are you saying it would be nice to get it from Robert Wood Johnson Foundation or from other places? I think you're being directive to the Secretary so I would suggest including from the Department.
DR. LUMPKIN: So actually additional Departmental interventions, guidance and funding.
DR. FITZMAURICE: That will work.
DR. MAYS: Ok, that's good, I didn't know they didn't understand, that's good. Ok.
DR. ZUBELDIA: Just clarification for me. The recommendations go above this paragraph on page three, right?
DR. LUMPKIN: That's correct. Recommendation one.
DR. MAYS: Employ a multi-pronged approach to obtain improved data on racial and ethnic populations in programmatic, administrative and survey data supported by the Department. Whereas current systems do reasonably well in collecting data on the white and black populations, and to a lesser extent Hispanic populations, information is serious inadequate on the Asian, Hawaiian, and other Pacific Islander and American Indian and Alaska Native populations.
DR. COHN: Obviously I was not part of the hearings, what do you mean by multi-pronged, do you mean additional approaches, is that something that would jump out to the Secretary to understand what that means?
DR. LUMPKIN: That's a pointed comment there.
DR. MAYS: By multi-pronged what we're saying is that different levels and at different places. So we've listed some of the different places which would be programmatic, administrative survey data, but it also is kind of a multi-layered intervention that would be necessary. They don't like --
DR. COHN: I just don't understand it, I don't know how the Secretary could understand it, specifically.
DR. FITZMAURICE: I would suggest taking some of what you said like an approach at different levels, because they'll see multi-pronged and say well we do have forks in our dining hall, or we will interpret it however it's beneficial to us, but if you mean across different programs and at different levels of national, local or --
DR. MAYS: How about employ an approach that both federal and state levels? Go ahead.
MS. GREENBERG: I didn't really think we were talking about levels. I think what was being addressed here was that if you're talking about survey data you might want to over sample, you might want to do targeted surveys, etc. If you're talking about programmatic data you might have another approach, and so we didn't want to indicate there was one approach for everything. I mean you could just say employ --
DR. LUMPKIN: Comprehensive.
DR. FITZMAURICE: Multi-faceted.
MS. GREENBERG: Something, and then say more detailed recommendations will be provided in a future communication or something, because I think some of those specific detailed approach are going to be included in the next report about where you might over sample, where you might do other --
DR. MAYS: Ok, so we're going to say employ a multi-faceted approach, or employ multi-faceted approaches, is probably what it should be, employ multi-faceted approaches.
MR. SCANLON: Vickie, I would actually say that HHS should continue to employ a multi-faceted approach to improving information, or a multi-faceted strategy to improve information on race and ethnic populations, and then we have, it suggests that we deal with programmatic and administrative, I would add research as well probably, because there's a, there's one set of data needs that will only be met by special targeted research and we might as well make that part of it.
DR. LUMPKIN: Before continue expand, or enhance.
DR. MAYS: Ok, so HHS should continue to employ a multi-faceted --
DR. LUMPKIN: Expand the multi-faceted approach.
DR. MAYS: Should expand the multi-faceted?
DR. COHN: Can I ask an odd question on this one, because I'm just not sure it's a recommendation. Is it not covered by six and to a certain extent five? I mean is one really give a recommendation? Maybe this is an introductory paragraph to the other recommendations.
DR. ZUBELDIA: I think the recommendation at this point has become to expand whatever it is that they were doing, to expand that approach, that's the recommendation.
MR. SCANLON: You could actually, Simon, I think number one, number one I think is going to be the overall, you could actually move six up into one and say this would include increased studies --
DR. MAYS: Actually what I thought he was suggesting is that two, three, four, five become like A, B, C's, and that one is very comprehensive and then that's A, B, C, D, E, whatever. I think that's --
MS. GREENBERG: You'd go language, because it relates to different ethnic populations it can fall under this.
DR. MAYS: Ok, so let me just see if I have all of what you were suggesting, and then we'll do it. Let's see. HHS should expand the multi-faceted approach to --
DR. ZUBELDIA: What are you saying? Vickie if you make this into we recommend that HHS expands --
MR. SCANLON: Should expand.
DR. ZUBELDIA: And that way you don't need an introductory paragraph for the recommendations, this becomes the introductory paragraph of the recommendations.
DR. MAYS: Ok, we'll try it now. We recommend that HHS should continue and expand the multi-faceted approach, and then it's everything else that's there, right? Marjorie's making a face.
DR. LUMPKIN: Because I just convinced her to get rid of continue.
DR. FITZMAURICE: HHS should expand.
DR. LUMPKIN: Because expand implies, continuing.
DR. MAYS: Continue, ok. And then it would stop at the end of where number one stops. And then under that it says, no, at the end of that I'd say strategies will include, and then instead of two it will be A. Improve collection of data on language required to allow full participation of all ethnic populations in health communications.
B. Collect primary race data and surveys to bridge the transition between the old data collection and new data collection so that we can continue to monitor trends.
C. Translation of all relevant documents necessary for the collection of data on populations with limited English proficiency.
D. We encourage the inclusion of data on the economic and social environments of individuals via linkage of person level data and appropriate area level data to provide greater insights into the structural and environmental causes of health disparity.
And then the final one, E. Support the development of studies targeted by population or geographic area.
MS. GREENBERG: I think if you're doing it that way you can take out the we encourage in D.
MR. SCANLON: Start with a verb I guess in each case, translate, include. Now Vickie we are moving six up to, I think this concept --
DR. MAYS: Oh, you want that as part, ok.
MR. SCANLON: Well, I think we have to say, previously with six, I guess we're not moving that up. Is that going to be a sub-point?
DR. LUMPKIN: No, that becomes A, B, C, D, E.
MS. GREENBERG: And did we add research?
DR. MAYS: I put research right after programmatic, programmatic research, administrative and survey data, ok.
DR. COHN: I think this is actually getting very good. The one comment that I would make is is that you actually have another set of recommendations a couple of paragraphs up that you need to somehow bold, identify as a recommendation, that has to do with the greater instruction on how to present multi-racial data. I think that's a recommendation.
MS. GREENBERG: Maybe that should be moved down --
DR. COHN: Well, I mean, it could be right there but it needs to be bolded with recommendations, it's sort of like there's two sets of recommendations in this letter, and otherwise people will completely miss this piece. I am correct on that aren't I? That is meant as a recommendation. It doesn't have to be all at the bottom but it just needs to be bolded or bulleted or therefore we recommend:, something like that.
DR. MAY: I think it would just be better to move that.
MR. SCANLON: To work with OMB to develop guidance --
DR. MAYS: So maybe what we should do is make that a two, leave this like this and make that a two.
DR. LUMPKIN: There is a motion by Vickie to adopt the letter as we have edited it. Is there a second?
DR. LENGERICH: Second.
DR. LUMPKIN: Moved and seconded. Is there further discussion on this document? All those in favor signify by saying aye.
COMMITTEE: Aye.
DR. LUMPKIN: Opposed say nay. Abstentions?
DR. MAYS: Thank you. Can I just make one comment? As a chair this is really my first, everything else I've done has been leftover, this is my first so I'm on a learning curve here, but thank you.
DR. LUMPKIN: Well, thank you. Charlyn are you still there?
DR. BLACK: Yes, I am.
DR. LUMPKIN: We would like to apologize, we had to, you are in British Columbia, you're a little bit used to snow as we are, as I am in Chicago which is where I live. The rest of the Committee, however, comes from southern climes as well as D.C. and it's beginning to snow so we had to move some of our business ahead of this in order to make sure that we had a quorum to take the votes we had to take, so I apologize for getting to you late and I appreciate you hanging on.
DR. BLACK: No problem.
DR. LUMPKIN: We've asked you to come, and I'm just going to give you a brief introduction and let you charge into it, continuation of our series addressing the issues related to population health for the full Committee. Dr. Black became director of the Center for Health Service and Policy Research in April, 2002, and she has worked as senior advisor to the president of the newly created Canadian Institutes of Health Research as a visiting scientist and senior advisor to the president and CEO of the Canadian Institute for Health Information. Her doctorate is health services research from the Johns Hopkins University, and thank you very much.
DR. STEINWACHS: And we're very proud of her.
DR. LUMPKIN: And you've also worked with Barbara Starfield who was on the Committee for a number of years and Don Steinwachs is here also. So thank you very much, we're now getting your slides up and going.
DR. BLACK: John I wonder if you can just tell me how many people are in the room, give me a sense of the audience?
DR. LUMPKIN: There are 13 members of the Committee and a total of about, I'd say about 40 individuals.
DR. BLACK: Ok, thanks. So tell me when to go.
DR. LUMPKIN: Ok, we have slides.
DR. BLACK: Terrific, thank you very much, and I do want to thank you for your invitation and I cannot attend in person. I am familiar with snow, I'm from Manitoba which is just north of Minneapolis, so I do understand snow, but I'm in a clime that's much warmer than that now.
Let me just say that I'm sorry I'm not able to attend after having read your recent report Shaping Health Statistics Vision for the 21st Century. I have to commend you on what I think is a really excellent piece of work, and one that moves the notch a lot higher, so I am very sorry that I couldn't be with you today to discuss some of the opportunities around that report and how you intend to move that agenda forward.
So let me just start with the first slide by saying that I'm really bringing a very narrow Canadian perspective on the opportunities and challenges for developing health statistics and health information to you today. I wonder if I can just go to the next slide. Canada is a small country, this slide should tell us about some Canadian landmarks in population health. We have a real legacy to build on and have I think really profoundly influenced the population health agenda despite being a small country, 30 million, it's perhaps because of our geography, we're scattered over such a vast land mass that we have had to think very differently about how to monitor and improve the health of our populations.
One of the most influential documents was 1974, a document by, that was fronted by Mark Lelond(?), a federal minister of health, it was called A New Perspective on the Health of Canadians. This laid out quadrants of activity that influenced the health of the population, and really set the agenda for the population health movement. Some of it you will remember, the Ottawa Charter on Health Promotion, the Health Promotion Agenda Movement, and adopt some of the population health language.
But I think probably one of the most important influential pieces of work is the book published in 1994, Why Are Some People Healthy and Others Not? This was put out by a group that was really charged, had a focus on population health. This book that was edited by Greg Stoddard and Bob Evans, Bob Evans is a colleague of mine in B.C., really raised some profound questions about the investments we make and the way we reorganize our activities, and whether they do or do not really make people healthy. It talks about the contributions and the importance of health to making a society productive.
And it raised some profound questions and I'm going to give you a quote from the Canadian version of Allen Greenspan, who at that time was the federal deputy minister of health in Ottawa. He said that no research group in Canada has contributed more to the evolution of health care policy than the Population Health Program of this Canadian Institute for Advance Research. And I think it's fair to say that this document really shook the foundation and generated a lot of subsequent activity.
So if I can move to the next slide, which should start with 1994, strategies for population health, investing in the health of Canadians. This committee was struck, it was a committee of provincial and territorial and federal deputy ministers of health, specifically oriented around grappling with the issue of how should specific strategies be developed to focus on the questions raised by the Lelond Report first and the 1994 document, Why are Some People Healthy, Others Not? So this represented I think an adoption of the population health theme as a very important mantra for a number of organizations in the country. The message was amplified when the Prime Minister culminated the results of a panel he'd convened, the National Forum on Health, which was a group of highly influential thinkers that articulated a strategy and new direction that Canada would have to pursue to really focus on health instead of illness, disease and health care.
The next and final installment here that I think is very important from a pop health framework is a book that was published in 1999, again with the support of the Canadian Institute for Advanced Research. It was called "Developmental Health and the Wealth of Nations, Social, Biological and Educational Dynamics" and it really emphasized the importance of early childhood development as a critical time to influence health and people's subsequent development.
So I've provided you with these Canadian landmarks to say that we've built, had a strong legacy to build on that has profoundly influenced a number of sectors, it's influenced the research community, it's influenced the policy community, it's influenced the data collection stewards in the country. So the population health theme has played loud and large for a number of years in Canada.
Now I just want to move on and give you one definition, next slide, what is population health, and I'm giving you a definition as it was interpreted by the policy makers, the committee of deputy ministers, who assembled to consider what the concept of population health meant for their actions and activities, and this definition comes directly from their documents. Population health refers to the health of a population as measured by health status indicators and as influenced by social, economic, and physical environments, personal health practices, individual capacity and coping skills, human biology, early childhood development, and health services. Next slide.
I think what's important is that this committee moved further than just defining population health, and they said the implications of the definition is that we must move beyond measurement. So as an approach, population health involves measurement of health status, analysis of the issues raised, and I think this is the important signal here, applying resulting knowledge to develop policies and actions to improve health and well being and evaluating results, so the start of iterative cycle. So this for 1997 was I think sent a very important signal, and I don't have a slide now to describe the number of organizations that then have subsequently moved to encompass and embrace population health in Canada.
Our national statistics agency, Statistics Canada, has been a very big influence in this area, Statistics Canada for instance has introduced a new series of survey instruments that are focused on health that work in the unique country, both at a provincial and a federal level to try and amplify our ability to measure health in ways that are meaningful for a population health framework.
Canadian Institute for Health Research, which does have a mandate for data collection focused more specifically on the health care system, has really developed a series of reports and worked in partnership with Stats Can on these issues. A new initiative, the Population Health Initiative has been formed. Our new Canadian research agency that's equivalent to the NIH has been reformulated the Canadian Institutes of Health Research, has been formed with four major pillars of which one that is supposed to be developed is population health. So this concept has had a profound influence on Canadian development.
Now if I can move onto the next slide, I want to say that I'm not going to talk now about the national scene, but I'm really going to take the particular focus on a single province, because my own work has, my own perspective arises from working in a very data rich provincial setting and I think it's really from these provincial settings that much of the foundational understanding of what is possible in terms of developing health statistics and health information systems has been laid, so that we have gained experience within provinces.
Now for those of you who are not very familiar with Canada, Canada is ten provinces and three territories at the very far north, very small populations, but 13 different organizations within a federal system. The Canadian Health Insurance System, while operating under federal regulation, recognizes that there is no constitutional authority at the federal level for health care. And all of the activity really comes from the provincial level. So this obviously raises enormous challenges when we think about information systems. So just take note that my perspective is now moving from a provincial one but one that I think has relevance and importance at federal level.
The work that we have done in a data rich environment within a provincial system has led to this definition that health information system has as the primary goal of the transformation of data into information that's useful for planning and decision making about programs and policies related to health and health care. And the population health framework as certainly been the foundation for the development of much of the work I've done, both in Manitoba and now in British Columbia.
I just want to say that others in approaching what are the implications of pop health and the implications for statistics in health information, have taken quite different paths, so I heard you talking about racial disparities. The Canadian approach has been to look at more income and socioeconomic disparities rather than to bring race and ethnicity into the mix, so there's been a lot of work, for instance, on trends in mortality by income.
I'm going to now just talk about the provincial systems that I've worked with, and if I could have the next slide it should look, there's a hub, and the title is the Strength of Canadian Provincial Administrative Data Systems. We are very fortunate I think in Canada that having universal health insurance means that Canadian provinces are responsible for, with some exceptions, the vast majority, over 98 percent of the population that resides within any provincial border. This provides some unique opportunities to identify who lives in the province, who's eligible for services, who receives services, who don't. But at the hub of these information systems I think is a very important base for population based analysis and statistics development, and that is the existence of a population based research registry or registry for administrative purposes. This provides unique person specific information that allows the linkage in information so we can develop longitudinal person specific information. We can then attach information about place, that kind of thing. But the hub of these administrative data systems is this person based registry, and those systems that have great potential mean that we can link very much the health care data that forms the basis of administrative data, hospital, medical, nursing home, provider, prescription, and home care data about the services that people receive, as well as vital statistics about birth and death.
Now in working, and I worked with Nora Lou and Les Ruth, in developing what we called a population health information system, and I think this quote that has underpinned, next slide please, what have we learned, underpinned an initiative to make data more accessible really is very indicative of what we've experienced. Data are unlike other tools, they provide the raw materials from which information can be created, unlike printed tables which like a postcard provide a larger view of a larger phenomenon, data can act as a camera, you were talking that way when you were talking about aggregating data in different ways, allowing the researcher to manipulate the background, change the foreground, and more fully investigate the object under study. My point being that having person specific data, a registry to which you can attach not only health care information but as surveys are developed, the possibility of then being able to link detailed health surveys to this information provides a very powerful potential. And I have to say working with Barbara at Johns Hopkins, one of the advantages I had as a Canadian student was as a data set for my thesis research I could use linked data from Manitoba where a very detailed longitudinal survey of the elderly was linked to this population based registry so I could look at the interface between detailed survey data on non-identifiable individuals, anonymized individuals, and look at health service use in relation to survey information. So we've been able to use these systems. Next slide please.
The challenge obviously in working with administrative data is to go from some very crude data that's contained in a population registry and utilization records, and to translate it into I think what your term would be health statistics, what we have called information key measures of, for instance, the populations need, relative need, are there differences in the underlying requirements for health care in this care, across populations. Can we from this crude data that was not designed to measure health status, can we approximate important measures of health status? And here we were not trying to do this at the individual level but for groups, for populations, can we then categorize and understand differences in utilization of services, supply of resources? And I'll just move to the next slide.
Translating data into information to support policy and planning. We found that there was a whole host of activities working from the base of this pyramid in terms of data acquisition maintenance enhancement. The development of tools to really focus the focus so that we could conduct population based analysis of the development of key indicators to track key concepts, and then the application of indicators to provide a comprehensive perspective on critical policy and planning issues. And then being researchers, more applied research to answer specific questions and monitor change.
The way we did this, next slide, was to really develop a population based system that linked these tools indicators about need, health status, utilization services and supply of resources, for a defined population, and to be able to compare these sets of indicators across subpopulations, so that we could put the pieces together and look at the larger pictures of how our most, our very expensive investments in health care were aligned with health. Next slide.
So what we learned about what's different about this population perspective, and I've noted many of these themes in your documented Shaping Health Statistics Vision, the population health perspective reorients us to consider health and the improvement of health as fundamental goals. So much of our energy is spent on program, on disease, on illness, the population health is profound is that it makes us consider where we're trying to go. It has huge implications for the way we organize data and information. Second point, it encourages us to think of populations defined by characteristics other than by their interaction with the medical care system, whereas in health so much of our experience and understanding of disease comes from interaction, who walks through the hospital door, who walks through the doors of medical clinic, we get very skewed understandings of the distribution of health in the population.
A third major point is that it encourages us to consider a broader range of factors that influence health and specifically those that are outside of the medical care system. How does educating kids influence health? And finally it encourages us to consider the marginal contributions of our investments. If we're to add more dollars into the health care system, more MRI's, will it have as much of an impact as other potential investments that we could make to improve health in our country?
And I just now want to walk you through a series of slides that kind of put these pieces together and show some of the, of course, paradoxical investments we're making in health. The next slide, and I hope you're with me with the slides, should say Premature Mortality Rates 1991 - 1995, and this is work done in the Province of Manitoba. These are 11 health authorities at the top, and at the bottom, aggregations of the health authority into a non-Winnipeg group, a Winnipeg group, Winnipeg being the capitol city, and overall for the province. The measure is a measure of premature mortality which we found to be a very powerful indicator of health status. This is a measure of death before age 75, which has been age and sex adjusted so it's standardized across populations. And we found it's more useful for explaining to the public differences in health status, differences in relative need for health care, than QILL(?) for instance, because we could say that the health authority Churchill, that has the highest premature mortality rate of just over six, is in fact almost twice as high as the healthiest health authority. So we could talk about differences in health indicators for a risk of early death that were twice as high. And what was also very important is that instead of providing our data now in order of the geographic references that we have, we began to order our data so that we were always presenting the healthiest region at the top and the least healthy region at the bottom.
The other point from this graph is that we could point to, the idea that if we looked at Winnipeg as the major, as one major urban center in the province, and the rest of the province non-Winnipeg, and the Manitoba average, things aren't much difference. But it's when you look across and within population, that understanding of no differences belies a huge amount of variation in underlying health need within the population as demonstrated by the stacked bars at the top.
If I can move onto the next slide, this is premature mortality rate, same years, but there are groupings of smaller bars that are grouped, the groups are aggregated to represent the 11 bars that were on the graph, but it breaks down even further of smaller areas within each of the health authorities. So that if we look at the grouping that is third from the bottom, there are a number of graphs, or stacked bars, across the page, and we can see that one of the poorest health areas actually has within it a very strange mixture of healthy and very unhealthy people, so that, and we came to understand that in forming health authorities, which have responsibility for providing health services, about these differences in subpopulations within their boundaries was critically important.
Now I'm going to move onto the next slide. Now in contract to the previous slides which indicated relative need for interventions, for improvements in health, when we align the supply, if you will, of hospital beds, we can see that there's a very different kind of orientation. Some of this is driven by the location of the most hospital beds being in urban settings, but there was a surprising oversupply, relative oversupply of hospital beds in some of the rural areas. And these were not at all distributed according to the populations relative need, so that we found a very strange pattern if we looked at health and the distribution of health and the potential need for access to intensive hospital resources, we found a real mismatch. The next slide will show that we also found a mismatch, not surprisingly, in the way those hospital resources are used.
So the next slide, hospital separation rates, and again we have the number of small bars, divided, aggregated into each of the health authorities, show incredible variation, but a general tendency, not surprisingly, for sicker populations to use higher levels of hospital contacts. But some very strange results given the relative difference in health status that we saw in the previous slide.
And then the final slide in this series shows childhood immunization rates. Now in contrast to, and this is not a new story for people who study health statistics, preventative measures are less likely to be taken up by poor health/high need populations, and the data shows this. So I think what was very useful was for us to work with understanding health and then on juxtaposing our investments in health care in relation to this. And we were able to draw some powerful messages and to I think bring some key messages to policy makers about what kinds of directions might make sense if we were to be more logical in our allocation of resources and think more logically about what kinds of things would actually make a difference to health.
So I just want to now move to my final set of slides, which kind of conclude what we've learned, and then I think in contrast to the direction you've set raise some questions about the dispersed directions that Canada is going. So this slide should say what have we learned from using administrative systems for research, and we have been soundly criticized for using administrative data because obviously they have a lack of depth, they're critical pieces that are missing, there's lack of standardization. They can be difficult to access and use. Next slide.
But what we have learned from them is that they also have incredible strength, and they have, we demonstrated I think a surprising ability to provide perspective on health and health care, but I think most importantly, the population registry within our Canadian administrative data systems, provides a critical hub for aggregating, for attaching in privacy sensitive ways, more specific data. The admin data systems while criticized for lack of depth do have great breadth in terms of population coverage. But I think most importantly for the future they provide an infrastructure for development, addition and triangulation of other data systems. And this is really important when you think that they provide the ability to follow individuals over the life course. We can actually watch entire populations mature, change, and understand the different influences that affected one cohort versus another. So I think your vision does contain this idea that a number of different data inputs are required to inform the health statistics needs of a population health vision that include registries, surveys, patient encounters, and health admin data. I would say in Canada we have specific provincial experience in at least three provinces with using these data systems, but we are at this point lacking the vision and the integrating vision that you've provided in your document.
Ok, I want to just now move on a little bit to say that in Canada certain provinces, B.C., Manitoba, and Ontario have learned to use these administrative data systems. They're important steps forward for the future and this slide is from the, again the Canadian Institute for Advanced Research group, and reflects the profound influence of Frasier Muster(?) on our thinking. This is from a report that was done in Ontario called the Early Years Study, which shows brain malleability, how influential the kinds of influences we can have as people age and obviously there's high ability to influence and the early years, from one to three, are really important when the brain is setting, and many of us are very set, our brains are not highly malleable at this point. But this group makes the point that in fact there's very little in the way of systematic intervention around health at a time when there's profound opportunity to influence and have great influence on children. And in fact our spending on health is very low in those years on health education, income support, social service and crime, but that it's huge as we age. So the point this group makes is that if we were really to try and improve health of the population we might want to redirect some that spending.
This next slide focuses on literacy and social economic gradients for use by province. And I think this is very profound because whereas we've obviously found huge differences in health by socioeconomic status, we know the importance of literacy on health, on being able to be employed, and on people's economic prospects. And we've found that some provinces, the bottom axis of socioeconomic status, for some provinces for their poorer socioeconomic kids, our able to overcome many of the challenges, the disadvantages children face, and have much flatter gradients in terms of literacy. Other provinces in Canada have been less successful.
So this kind of, these new horizons beyond the health care system I think represent the next evaluation in our data systems. So if I can have the next slide, the next stage of development of our provincially based at least population health information systems, will involve adding depth and breadth to our admin data systems. And both Manitoba and B.C. right now are making great progress for being able to link, of course in a privacy sensitive way, the educational attainment scores for all the children in grade school, in the province. There's progress being made at being able to link in at an aggregate social level the environmental conditions and exposures using social welfare data to be able to link in social expenditure and program data so that we can look at what kinds of interventions are brought to bear to influence social circumstances. And then other, for instance, workers compensation for injury, to understand some of the worker influence, influences that influence health. So that we're at a stage where we're making some progress I would say on adding some of the richness that is required by a population health model to our person specific longitudinal databases. Next slide.
So unlike the vision in your report we currently have no integrating hub, I think that while we have great potential to build capacity within specific provinces, we have no integrative hub. And there are a number of threats I would say to the development of information systems, provincially based information systems in Canada. These are the privacy agenda, do we need to consent every possible use of these data, it would be impossible. What are the privacy solutions that would enable us to get vital information from these data resources while at the same time protection privacy? The privatization of service delivery which you of course are well aware of, Canada collects information on services delivered that have health impacts by virtue of having a universally insured health system. But as we move away from that we're losing important information and I think we'll have to move to other strategies for how we learn about the multiplicity of private and public services that are provided and influence health of the population. Privatization of payment services, privatization in data collection, data stewardship activities. But I think one of the most important is that we have ten different provinces and we have ten different systems and we can't put the pieces together and do comparative work across the provinces.
Next slide I'm just going to skip, it gives some specific examples of challenges, different data collection and stewardship arrangements, different privacy enhancement solutions can absolutely knock out the ability to do comparative statistics, etc. And then different problems with data access.
So, now I'm going to move on to the slide what did we learn from using admin data systems. As we I think bring additional richness to the real time systems that are developed for tracking services that are delivered there is the potential to augment our ability to understand influences on the health of the population, but there's a real need to separate research holdings in real time systems, research holdings clearly must maximize anonymity while maximizing our ability to link data to put the pieces together. On the other hand, real time systems need identifiable information and must be highly accurate, so we need to separate these systems but at the same time we should maximize interaction across these two domains of activity to improve our information system development.
And then the next slide what did we learn from using admin data systems continued, a population registry is critical. We need similar registries to track populations of providers, individuals, facilities, and paralleling some of your themes, state of the art and standardized data collection tools, comprehensive data collection for all health related services provided to Canadian is the dream, but we need to be able to develop anonymized person oriented longitudinal data and we need approaches that are privacy sensitive and at the same time quality enhancing.
And then the next slide says administrative data like paper clips. A colleague of mine has likened and mandated his paper clips, right, they're all over the place, they're cheap, they're available. They're very useful for holding, for their original purposes which was holding pieces of paper together. But under certain conditions you can use them for other things, like when your zipper tab breaks you can use them as a replacement, so they can be used. And we feel a little bit in the provinces that have used these data that we're really struggling to use these tools, these data tools that were developed for other purposes to do things and push beyond. But our thought is we have learned about some powerful strengths, especially given the registry, population based registry that's so critical for population based analysis. And as we design information systems forward, it's really important to understand the possibilities and design systems that benefit from the advantages of population based analysis in developing the next generation of IT applications, so we're not just working with paper clips, we're working with systems that are designed to do the job of measuring the health of a population and providing information that actually gives us clues about what the correct strategies are to influence and improve the health of the population.
And final slide is a great old cartoon by Sydney Harris, has time, temperature, life expectancy. This signals I think what we're all striving to achieve, which is to put understanding of health and its importance on the map, and to make it more apparent to policy makers, to the population at large, but to give information that's relevant to different groups.
I have to say in closing that I think that your report really has set a new standard for developing a vision to move forward. I commend you on your work and I hope that in the future we will be able to work with you as you implement a very focused vision that is built squarely around a population health understanding so that we can learn from each other as we move forward. So that's the end of my presentation.
DR. LUMPKIN: Well, thank you very much. Do you have time for a few questions?
DR. BLACK: Sure do.
DR. LENGERICH: This is Gene Lengerich, thank you very much for a nice presentation. I was wondering if you had, since there are the different provinces, I wondered if you all have had discussions about some standardization or at least recommendations for methods of analysis and presentation of various data. For example, I mean simply, your data are you said age and sex adjusted there, are there differences or recommendations around processes or populations to use or indicators to look at that are consistent across the various provinces, and have you all reached that kind of discussion.
DR. BLACK: I would say that it depends on the data source, of course, where the federal agency Statistics Canada is involved it's not an issue. Where the provinces are discussing issues across provincial health care systems, it's been fraught with political and technical difficulties. The political difficulties are that the federal government has brought this forward within a vision of accountability and developing performance measures, so that provinces can be held accountable for the federal funds they receive. This has not pleased the provinces, instead of working together they've produced independent reports that cannot be really compared and standardized despite a commitment to producing only at this point 14 standard indicators that would allow us to compare the provinces. So I would say that there is progress being made along this dimension but it's a very rocky path.
DR. LENGERICH: Just as a follow-up, I guess being in an academic institution there, are the academic institutions playing an important role in that policy making for the federal government?
DR. BLACK: Specifically with respect to the development of information systems or policy?
DR. LENGERICH: Well, the standards for information, for comparison of information across various policies.
DR. BLACK: I would say there are fairly good working relationships with the organizations with specifically the Canadian Institute for Health Information. There are some with Stats Canada, I think Stats Canada is very strong and has its own analytic team and there would be less interaction, but some, with the academic research community. The organization charged with collecting health information has had to be very reliant on the research community, so there are good linkages or evolving linkages there and I would say that discussion has been very fruitful and there's been learning across these communities.
DR. LENGERICH: Thank you.
DR. STEINWACHS: Charlyn, this is Don Steinwachs, hi.
DR. BLACK: Hi, Don.
DR. STEINWACHS: As you know I'm in the United States frequently to get people interested in a topic and population based health is one they should be interested in, you have to tie it to something they really care about, and at least some days of the week the two things I think about are one, is the employers in America who have a handle on most of the health insurance for the idea of a productive workforce, and what we're doing in looking at population health helping people improve the health and productivity workforces. I guess the other is the rising problems of health care costs again, and you'll always get people to pay attention. So I guess the two pieces here was as you're doing work looking at what the registry and the population based health work are doing, do you see it as opening up new insights, either now or in the future, around the productivity that might play to employers into that sector and around costs and cost control and potential future cost savings?
DR. BLACK: Yes, yes, absolutely. We're in fact putting a proposal in to develop, to enhance the development of our provincial research based resource and one of the things that we do want to examine is so is the health of the new economy worker different from that of the old economy worker? What are the differences? And what are the challenges in keeping workers healthy and productive over their life courses? So being able to study some of those issues is one of the ones we believe should interest both politicians and employers, and although the data systems are not strong to do that yet I think there's potential to develop that capacity, and that is an important, one of four important themes we've identified for future development, at least to British Columbia.
The cost issue is absolutely critical and I'm sure you're familiar with Elliott Fisher's work, very nice work that has really used the combination of data systems to look at the question of do individuals who have certain conditions do better when they are treated in high cost settings where they have more medical input versus lower cost settings. And I think there's some very profound findings from that recent study, in the Annals of Internal Medicine that showed that the outcomes are not better, satisfaction with care is not better in high cost very intensive areas, locations, where individuals received much more costly services. So I think that's one of the real strengths of these data systems is they can look at the relative costs of increasing intensity and investment in the health care system. And perhaps we can look at what are, put that picture in the future against what are the relative investments in education, and try and understand what some of the, what the best future directions would be for investments. But I think the recent work, some of the work we do but certainly much more strongly now in the Fisher article does suggest that the high intensity investments in the health care system are not paying off in terms of improve population health.
DR. LUMPKIN: Thank you, and I think at this time because we have a couple of people who have flights we're going to thank you very much for your presentation, it's been very helpful in moving forward in our agenda trying to what we call bridge the gap between the part of the Committee that works on population issues and the part of the Committee that works on standards and privacy and others, and we're trying to make sure that all of us are moving forward in a coordinated way, and presentations like yours helps us make sure that our thinking is consistent, sort of what I call between the right brain and the left brain.
DR. BLACK: Thank you very much.
DR. LUMPKIN: Thank you very much and I hope your weather is better where you are than it is here.
We're going to go to the reports from the Subcommittees and Workgroups and we'll start off with Simon since he has a plane.
DR. COHN: Thank you, and I'm going to be relatively brief. We have upcoming hearings on March 25th and 26th and we have another set of hearings scheduled for May 21st and 22nd. We are also now that NCHS has stabilized and moved we'll be polling Subcommittee members for additional hearing dates for the last half of the year, probably in the next week to ten days.
Obviously we have a number of issues that we're dealing with, one is the PMRI terminology recommendations. Those will be the subject status for the May 25th meeting. As we discussed yesterday, CHI, the combined health care initiative is becoming a standing issue and that will be part of the second day as well as HIPAA implementation issues which of course is a standing issue, and we're going to go and get at least an update on the claims attachment piece, which is something we thought was settled and appears to be sort of up for some more discussion about exactly how that's going to play out.
Also as we heard yesterday there is work going on or contracts being written for the ICD cost benefit study, unfortunately the contract timing has been somewhat slow in terms of getting all the government signatures appropriately and so it looks like that project will not be starting until mid-March. We'll be obviously talking about it at the end of March on the second day, I think our hope is still that we may be able to have something to report back in June to the full Committee but the longer it takes to get it started the more difficult it's going to be to make that timeline as opposed to bringing a report back to the full Committee in September.
You have also heard about enforcement and the intent to have some joint hearings yet to be scheduled but I expect sometime in the next couple of months on HIPAA. We've also been I think talking a little bit about security, to me the issues around security are what, when, how, and then probably who, sort of in that area, but I think we're still trying to figure out the what, when and how piece in terms of what needs to be done and really when. And we'll be talking about that in the Executive Subcommittee and I presume getting that resolved over the next, I told John Houston it would be done in six weeks, and I think reality it will probably take a month, it will probably take two or three months to get it all resolved, but it will be resolved I'm sure by the next full meeting.
MR. HOUSTON: You said something about being an ER doc and the fact that everything had to be done quickly.
DR. COHN: Well John and I share that sort of strained view of the world, I just realized that the Executive Subcommittee meeting may not get scheduled until April so that may, it probably has to be discussed there.
MR. SCANLON: Simon, in the PMRI vocabulary standards, do you have a time frame for when it might be presented to the full Committee?
DR. COHN: I think we're on the timeline to make a final report and recommendations for the September meeting, and we may have something just to begin to talk about in June.
DR. LUMPKIN: I think it'd be good to do some background presentations in June, so that the Committee members not working directly on it won't get the issue cold in September.
DR. COHN: You mean you don't want 61 recommendations coming up cold in September?
DR. LUMPKIN: I think if you would follow the example of the Populations Committee and streamline it down to six it would probably be very successful.
MR. SCANLON: One more thing. I guess we, as much as I hate to bring this up we probably have to think about the 2003 annual report on HIPAA progress --
DR. COHN: Thank you for reminding me, that is on the issues list but the issues list has gotten long. So hopefully for June we'll have a rough draft of the final report which we'll start on and I'm sure Mark and others will be contributing to as we sort of move forward, because certainly privacy is the big headline this year as we all know.
DR. LUMPKIN: And nothing in October?
DR. COHN: You mean another big issue? I was thinking that this report would cover the implementation of privacy but probably not already be submitted by the time October hits.
DR. LUMPKIN: Alright, thank you.
MS. GREENBERG: It wasn't clear to me what the main agenda items were for the March meeting, March 25, 26.
DR. COHN: Oh, I'm sorry, I thought I went through that. First day is PMRI terminology --
MS. GREENBERG: I thought you had said May --
DR. COHN: No, that was all March, and then the second day is CHI --
MS. GREENBERG: Somehow I thought you said that was May.
DR. COHN: No, May we've been trying to hold primarily for the ICD-10 project but it's a question of what they'll have ready to present at that point. So that one is to be determined.
DR. LUMPKIN: Thank you and safe travels.
DR. LUMPKIN: The NHII Workgroup had a fairly extensive discussion about, sort of started off with some of the activities, the Department is holding a conference on the NHII on June 30th through July 2nd, and noting that there's some increased activity by the Department in that area we wanted to just get a feel for what it is that we should be doing in the Committee and we felt that it was very important for us to continue to monitor implementation as well as to identify gaps. Consistent with that gap area we are looking at two days of meetings, one, our March 18th meeting is not seeming to happen, the people we wanted to invite don't appear to be in Atlanta so we're looking at moving that into late in April or early in May. And then the second day of hearing will be on the 6th of June, which will focus in on issues related to the personal health record and it will be predominantly a meeting of the Workgroup itself but we may invite a few outside experts to present and participate in a discussion but it's mostly to begin to try to formulate some areas of concern.
We will be preparing for the June meeting a letter to the Secretary as a follow-up to our National Information Infrastructure, looking at the higher level activities with recommendations about specific activities we would encourage the Department and certain agencies to get involved with to assure that there is a health component to the National Information Infrastructure.
Any questions on where the NHII is going? Ok, let's see, Populations, let me go to that because I see Vickie packing up.
DR. MAYS: Populations is current involved with trying to pull together reports on its hearings. We have a rough draft of a report for the population based data, we may, we're not sure, have another one that would be available for June on American Indians/Alaska Natives, and we will try and have a hearing in mid-May in Los Angeles. There will be a meeting on Asian Pacific Islander health, and we were going to tag onto that and do our hearing on Asian Pacific Islander and the collection of data on race and ethnicity.
DR. LUMPKIN: Did I understand correctly you were going to do a hearing specifically also on Hawaiian health, in Hawaii, and that the chair needed to be there for that one, is that correct?
DR. MAYS: I heard the ethics guy today, I didn't dare bring up our meeting in Hawaii, Los Angeles, which means I don't get to travel anyway, that's fine.
DR. LUMPKIN: Any questions on Population? Thank you. Privacy.
MR. ROTHSTEIN: The Privacy & Confidentiality Subcommittee report is actually in two parts. Part one, I want to review the meeting that we had this morning to develop our agenda for hearings and projects over the next several months, and we decided to work on two particular issues. First, as Simon briefly suggested, we plan to work with the Standards and Security Subcommittee on holding joint hearings dealing with enforcement and implementation of both the privacy and security rule because of their interconnectedness. We're also going to be working on designing some sort of HIPAA evaluation strategy so that we can advise the Secretary on measures that need to be taken to understand whether HIPAA's actually working besides simply the number of enforcement actions and complaints received by the Department.
The second topic that we decided to work on is the issue of redisclosure of information following a HIPAA authorization. So as you know, once an authorization is received and the PHI is sent to a non-covered entity, at that point the privacy rule does not apply and the information may be redisclosed without any HIPAA sanctions although there may be other things that would prevent or limit that disclosure. And we want to specifically get a handle on how that may play out with employers, insurers, marketers, and all sorts of other third parties. So that's the second agenda item for the Subcommittee.
The second part of the report deals with the letter of January 9th that was sent by Secretary Thompson in response to our letter of November 25th. And as to this part of my report, I want to make it very clear that what I'm about to say represent only my views on the issue because we did not have ample time to discuss the matter with the entire Subcommittee. Nevertheless, given the fact that we spent so much work on this, had such a detailed letter, I think I would remiss, certainly the Subcommittee members might feel differently, if we didn't at least comment on the letter that we received in response to our letter. But these are my own personal views.
The letter that was sent by the NCVHS on November 25th and the prior one that we sent on September 27th were based, of course, on the three hearings that we held in the fall, and the testimony that we received from over 70 witnesses. And you'll recall the language that we used at least in the November letter dealing with the confusion, frustration, anxiety, misunderstanding and even anger among many of the witnesses and many of the covered entities. With unusual directness and detail in our November letter, we described how woefully inadequate guidance, technical assistance and education for covered entities and consumers already were causing negative consequences to health care as well as our assessment of the likelihood that things would get much worse on April 14. In the letter we exhorted the Secretary to make HIPAA privacy rule compliance a top priority and to increase by several orders of magnitude, and that's the language we used, the resources devoted to compliance assistance. We said that there must be a greater sense of urgency at the Department to move forward on the numerous issues we identified as top priorities. Among other things, we recommended an immediate focus on one, public education about the privacy rule. Two, efforts to eliminate disruptions to the flow of health information in research, public health and other areas caused by defensive practices and misunderstanding about the requirements of the privacy rule. And three, the urgent need to facilitate compliance, especially by smaller covered entities and rural covered entities by providing sample forms, model language, and check-lists.
The Secretary's response was in my view disappointing. It basically said don't worry, we've made good progress on these things already and we're working on the rest of them now. To quote from the letter "The Department has already undertaken significant outreach initiatives to promote voluntary compliance with the privacy rule. These efforts, many of which address issues and recommendations identified in the Committee's letter, have significantly expanded and increased in scope since the hearings occurred."
The letter goes on to mention the following items. First, increased coordination in internal training programs at OCR and CMS. Second, the issuance of a guidance document on December 5th by OCR which I would add was an excellent help to the covered entities. Third, OCR participation in conference calls and seminars with covered entities, and fourth, a mention that OCR is still working on technical assistance materials for covered entities and consumers. The measures described in the Secretary's letter, I believe, are necessary but not sufficient to address the problems we outlined. The Department's efforts are not nearly enough and they are much too late. Our initial letter alerting the Secretary to all these problems was sent September 27th. The Secretary's response also does not address our two overarching concerns in the November letter. First, the lack of resources committed to HIPAA compliance assistance, and second, the lack of a sense of urgency in HIPAA privacy rule compliance assistance.
Let me also mention that at Marjorie's suggestion I attended the Atlanta HIPAA conference sponsored by OCR, one of the four nationwide in February and March that Stephanie mentioned yesterday. The conference was held on February 18th which was the day of the blizzard in Washington, and I think that OCR did an absolutely incredible job of pulling this meeting together when no one in Washington could get out of town. And so I think OCR is deserving of high marks for its efforts. There were about 1200 people in attendance, there was a great level of interest in the topic, and the talks were of high quality. And several people in the audience remarked as I sort of wandered around with my ear open, that the audience members were impressed that OCR staff would attempt to answer specific individual questions and often the questions were quite difficult.
But nevertheless, the conference had I think limited value. The conference should have been held six months ago, right after the amendments were published in August of 2002. Holding a conference six weeks before the compliance data is obviously much too late although it is still responsive to some of the things we suggested so it's hard to be critical across the board.
The second observation about the conference is that a general HIPAA 101 course is too basic for most covered entities that have attempted compliance, and not basic enough for those that haven't. The audience was quite mixed by knowledge level and also the areas in which they had concerns. I think clearly specialized courses should be the way to go in the future and I would recommend that they be partnered with relevant organizations on particular topics. Some examples might be HIPAA and research with NIH and AAMC, HIPAA and public health with CDC, ASTO, and NAHO(?), HIPAA and health plans with AAHP and those are just some obvious suggestions.
So I did want to present to the full Committee my comments on the Secretary's response. Obviously as a Subcommittee we will continue to monitor HIPAA compliance and come back with some official document that we hope that other people would clearly agree with and that will help HIPAA compliance go forward. Thank you.
DR. LUMPKIN: Thank you. Considering the timeframes, and maybe I missed it, what are the plans of the Subcommittee to monitor post April 14th activities and issues?
MR. ROTHSTEIN: Well, obviously we're going to continue monitoring on an ongoing basis, and the first thing on our agenda is the joint enforcement implementation work that we are going to be doing in partnership with Simon's committee. We talked a little bit about what we're going to be doing post April 14th and I think there was a degree of consensus among the Subcommittee members that we need to wait a few months after April 14th to get a sense of what people are doing. We can't hold hearings May 1st. And so I think that after the summer perhaps would be a good time to take stock, go back and look at all those recommendations that we made and areas in which we said there was need of guidance and clarification and there were problems, and coming into compliance, and see how many of those problems have been solved and what other problems may have arisen since then and then come back with additional recommendations for the full Committee.
DR. LUMPKIN: Have you considered or had discussions with OCR about getting them the data stream of the type and obviously not copies of the complaints but some monitoring of the types of complaints that are coming in and the volume, there maybe something of some value --
MR. ROTHSTEIN: I think that's an excellent suggestion and I think that's the kind of thing that I hope will come out of the hearings that we have with the Subcommittee on Standards and Security. We really need to get a handle on whether the privacy rule is working and what the best measures are to try to figure that out.
DR. LUMPKIN: Thank you. Bob? I'd like to thank you for being tossed into the breach on a committee which essentially had no more membership left. And to encourage the other new members that quality is an important issue and Bob's feeling kind of lonely.
MR. HUNGATE: I'd like to take an opportunity here to kind of reset expectations a little bit in terms of what this Workgroup should do and it's kind of saying that because we've got really three dilemmas, there is no institutional cross-over from prior membership to this membership, the way in which the Workgroup has functioned in my perception has been to mostly to hold hearings for the full Committee, with one exception, which was a hearing last summer in Chicago. So I want to first say that our Workgroup doesn't feel that we should try to make a report which goes beyond this Committee itself, which means we change what the report of the full Committee is in the editorial work that you're doing now. Because we don't see that we've got something substantive to add to the broad debate, and AHRQ has its National Quality Report we can do some work from the testimony that relates to that and work with AHRQ to satisfy that need, but we don't see how we have the ability to make more than that in a contribution to the public debate. So we will use the substance of the report to reposition what we think we should be doing, and to that end we've got another workgroup meeting scheduled before our next meeting here, probably in late March or April, uncertain still exactly where.
The positioning that I think is sensible for the Workgroup itself is, and I must reflect Mark's caveat of expressing only his own opinion --
MR. ROTHSTEIN: You're also expressing the unanimous opinion --
MR. HUNGATE: Unanimous opinion, Don was not able to be there and he is also a member, so it is not --
DR. STEINWACHS: I'm happy to be joining here, and I endorse my chair.
MR. HUNGATE: But I must say that we've had a couple conversations that I think we're on the same wavelengths in terms of what the real issues are. And I can't help but take the little cartoon here and point out that there are significant differences between the left two measurements and the right measurement that are portrayed. The left two measurements are actionable by the individual and they're specific to the individual because that individual is there, one was time, one was temperature. The one on the right, if I blue sky(?) and think about technologies maybe that could be a changing display that relates to the one who walks beneath it, then the information would all be actionable and all be coherent. Right now there's an offset between the two.
I think that the role of the Quality Workgroup is an outcomes role that cuts across the other functioning and what we're going to try to do in working is to take the testimony that was there, say where we think it belongs in the structure of this Committee, presupposing that others have already acted on it because it was full Committee testimony, and then take those things that are separate to this group and try to tie them down. To make good recommendations is going to be really hard because none of us heard that testimony so we can't draw much from it except from our experiences.
DR. STEINWACHS: We could draw our own conclusions from what we think.
MR. HUNGATE: We will do that but would feel that that should then go to the Committee and get talked about, we think we better do that in the June meeting and then see where we go from there. I'd be happy to answer questions and invite input, so Don, add what you'd like.
DR. STEINWACHS: Well, Bob, referring to that you sparked I guess the sort of philosophical question back to the Committee is that we generally talk about producing health statistics, usually with a view toward use by government and government authorities and the general public. I think one of the quality of care issues comes up is to what extent we provide a vision and guidance about producing statistical information possibly that's of use to the individual consumer and patient. And it seems to me that's part of probably a future vision that says that we've got to get Quality closer to where you're facing decision, you have something to use.
MR. HUNGATE: If I really take my personal view to where it really is, it says that you cannot inspect quality in you've got to build it in, so quality occurs at the point of decision of the patient and the provider, and it has to move from where it is to a different plane, now that's why we think the NHII is important, and I think our task is to kind of focus that across the work.
DR. LUMPKIN: And further that the personal health dimension of the NHII would argue that Quality would also be in the decisions that a person reaches in conjunction with their caregiver but also the decisions that they make on their own, and by, one of the goals of the NHII is to move knowledge down to the point of decision and so it's providing the tools for individuals to make their own personal health choices that occur even before they go in, whether or not to take their asthma medicine that day because of pollution or whether or not it's time for them to go in and get a prostate exam or a colonoscopy. I think those concepts are all consistent with the vision, which is why as a Committee our overarching vision is the National Health Information Infrastructure and Standards plays a role and Privacy plays a very important role and Quality and Populations, it all fits together, but the way it all fits together as a Committee is the NHII vision.
MR. SCANLON: I tend to agree with you, I think in terms of quality measures and so on and patient safety, it's very developmental and there's really not that much agreement. And to be honest it's not clear where we're really going, though obviously you'll want to know when it happened and you'll want to be able to monitor that it is getting better or it's not getting better. There are a number of other activities, and as a result there are probably half a dozen or a dozen various groups that have an oar in the water and are working on various proposals and recommendations about how to measure quality and data, to measure quality and various things. So perhaps the Workgroup could at a minimum monitor and try to, where they're heading there. I think actually IOM has a workgroup underway as well that would be recommending some data aspects of measuring quality.
In addition, though, there are a couple of initiatives in the industry and here at HHS, nursing home, you saw the measures that we use for the pilot project on nursing home quality. There's another proposal coming up to measure home health quality, and the industry itself, hospital portion of the industry has announced kind of a voluntary effort to measure quality as well, and I wonder if we could ask the Workgroup at least to, you may actually want to bring these folks in and just sort of see how it's all interrelating to each other, and then kind of monitor this area for us. But I tend to agree with you, this is very developmental and very fluid and there are a lot of folks trying to work on this and it's not clear, it's not clear where we're heading or that it's getting, that we even have good measures.
MR. HUNGATE: Ok, well that's helpful. I think part of our definitional thing is our task to look at health care quality or is it really health quality. In our Workgroup our discussion tended to say well we really want to talk about health quality, not health care quality. That's something that has to get some discussion and some fleshing out before we have a good sense of purpose. And I appreciate the monitoring activity you're talking about. I don't know whether we're well equipped yet to do that.
MS. GREENBERG: I appreciate your taking this on and the new members and I think that the Executive Subcommittee reiterated the importance of this area to the Committee and so I think that's, they're happy that the Workgroup will continue. And also it is in a unique position as you said having basically completely turned over in its membership. The various panels, they were almost I think more panels than hearings, that were held over the past several years under the previous Workgroup primarily as I saw strove to identify what the data gaps were, what the data information issues were in trying to look primarily at health care quality. I think you're certainly right about that. But over a period of several years and a number of panels and presentations, I think they did identify a lot of issues related to that. So I guess I'm a little unclear as to how you plan to, if there is still an intent to bring that together, if not so much as recommendations as findings --
MR. HUNGATE: We will try to do that. My uncertainty relates to whether that becomes, because there's been no discussion really of what was going on, whether that can result in publishable recommendations is subject to the judgment of this Committee. So we will try to fulfill that but recognizing that we're having some difficulty grappling with it at this stage.
MS. GREENBERG: Ok, so it is going to be a synthesis of that and then where to kind of go with it is the issue.
MR. HUNGATE: We really feel like we ought to use what's happened before and try to summarize it and say here's where we think we can make a contribution going forward.
DR. STEINWACHS: Bob, is there any value in having one or two of the now no longer members of this Committee but members of that working group be able to attend, is that a possibility for a couple of working group meetings to try and make that transition? Because I agree with you, it's hard to talk about where we've come from and what's been learned without having at least a couple of the key participants in that.
MR. HUNGATE: Part of the intent of the next Workgroup meeting is to do some of that bridging.
DR. LUMPKIN: Great, any other questions?
DR. LUMPKIN: The last item on our agenda is our future meetings.
MS. GREENBERG: Debbie Jackson has always done a good job here of pulling together some of the topics that have come out for addressing at future meetings. Some of these are being addressed by Subcommittees and other groups, and since it's kind of a random number of activities, we wanted to continue population health perspective, I think we had agreed at the Executive Subcommittee meeting last summer that we would try to have a presentation at each meeting around population health over the next several meetings, so we need guidance and probably from the Population Subcommittee on what would be the next best approach to this, or presentation at the June meeting. So a few names have come up but I think we could use guidance on that.
The DHHS data gateway, Jim has kept us informed on that --
MR. SCANLON: I can provide another briefing, full Committee or Population Subcommittee.
MS. GREENBERG: If there's interest in that. We've talked about international health topics and actually hearing the presentation today from Charlyn certainly is an international perspective, many of us don't think of it as international travel when we go to Canada, but in terms of the Department I know it is considered international travel. And I don't know what the interest, again, of the membership is in that topic. We talked about a possible closed door session with the ethics folks if people want to ask specific questions related to their own specific circumstances, that's a possibility. John, you had put school-based surveys on the map. We also actually had some discussion in the Privacy Subcommittee about the kind of health information that's collected in schools, that was not given a high priority by the Subcommittee for immediate, for the next few hearings, but there might be some way of sort of combining those two issues into some type of a presentation, one or more to the full Committee. The IOM study on race and ethnicity --
MR. SCANLON: I just don't think we'll have, other than a progress report --
MS. GREENBERG: Ok, that will not be done. So I think what we really need is for the Executive Subcommittee to have a conference call, we already raised a few issues for that conference call, probably early April, to talk about the agenda for June and also would welcome the other, so that the Executive Subcommittee does include all of the chairs but all the members to send to either your respective chair of your Subcommittee or to John or me suggestions that you have for the June meeting because as I said there's kind of a mixture of things here but I'm not sure that any of them jump out as being top priorities. I know it's getting on here and people want to beat the weather, are there any topics that I didn't mention or that people would like to have addressed by the full Committee?
MR. HOUSTON: I think in June, though, obviously the April 14th is not that far from June, it might be good to get some information from OCR as to maybe even at that early stage what they're seeing in terms of complaints, issues that may have arisen, I mean again, we talked about delaying public HIPAA hearings and the like but it might be really good to get a sense from OCR of the lay of the land as of the meeting date regarding the privacy rule.
MS. GREENBERG: I think at every meeting we have been having sort of updates from the Department on all the HIPAA, on HIPAA privacy and HIPAA standards and we will definitely will do that.
MR. HOUSTON: I was thinking extended, I know we sort of spent, even getting some statistical information maybe in advance of the meeting may be difficult because we want as much time as possible I would think prior to the meeting just to gather those, but I'd be really interested in getting a sense from them of what they see that the issues that are sort of percolating up and the types of complaints that they're seeing. So if we could spend some time on that I personally would find that very interesting.
MR. SCANLON: I think at a minimum we'll have it as part of the Departmental report. It will be about six weeks beyond the 14th of April, five or six weeks.
MS. GREENBERG: It will be about two months I guess. Genomics if you recall came up at the last meeting, I'm not quite sure what to do with that, but there was some interest expressed in that.
DR. LUMPKIN: Maybe Gene can take the lead on that.
MS. GREENBERG: I mean as I said it's kind of a potpourri so, any other?
DR. STEINWACHS: One small thing and it may reflect my ignorance, I know Congress has been appropriating money for health tracking and I expect to be more, and I did get a chance just to ask about whether or not NCHS was participating in any of that, and I don't know much about health tracking initiative that's underway separately, but it also occurred to me that that might be something that's part of the integrating framework and maybe this Committee has already dealt with that.
DR. LUMPKIN: The funding, I think it went through the Center for Environmental Health at CDC, and my understanding is is that they awarded it to a number of stellar states in the nation of which Illinois was one --
DR. STEINWACHS: So you have to leave the room now, John.
DR. LUMPKIN: But I think that looking at that particular issue, I can't remember if that was on our agenda for the meeting at CDC but it would be certainly within the population health perspective that we're looking at.
DR. DEERING: I wasn't going to mention that in particular or maybe this is the direction you were going, but we had some email exchanges about a Congressional staff input on how narrowly or broadly defined I think is open to discussion, and it also depends on whether it's the June or the September meeting, what issues might be in the pipeline, but that would be useful.
MS. GREENBERG: I failed to mention that the issue I guess there is whether we want to do that at the NHII Workgroup or wanted that at the full Committee and actually a case could be made for either.
DR. LUMPKIN: Ok? Anything else on our future meetings? Then, we still have an hour left on our scheduled meeting, so please sit in your place quietly. Having completed the business of this meeting, this meeting now stands adjourned. Thank you.
[Whereupon, at 12:25 p.m., the meeting was adjourned.]