[This Transcript is Unedited]
Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, SW
Washington, D.C.
DR. COHN: Well, good morning, I want to call this meeting to order, this is the second day of meetings of the National Committee on Vital and Health Statistics, the national committee is the main public advisory committee to the U.S. Department of Health and Human Services on national health information policy. I am Simon Cohn, I'm the associate executive director for health information policy for Kaiser Permanente and chair of the committee. I want to welcome committee members, HHS staff and others here in person, and also welcome those listening in on the internet and today we are on the internet. I also want to remind everyone to speak clearly and into the microphone.
Let's now have introductions around the table and then around the room. For those on the national committee I would ask if you have any conflicts of interest related to any issues coming before us today would you so please publicly indicate during your introduction. I want to begin by observing that I have no conflict of interest. John Paul.
MR. HOUSTON: I'm John Houston with the University of Pittsburgh Medical Center, I'm a member of the committee and I have no conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of the committee, I have no conflicts.
MR. REYNOLDS: Harry Reynolds, Blue Cross and Blue Shield of North Carolina, member of the committee, no conflicts.
DR. TANG: Paul Tang, Palo Alto Medical Foundation, no conflicts, member of the committee.
MR. HUNGATE: Bob Hungate, Physician Patient Partnerships for Health, member of the committee, no conflicts.
DR. STEINWACHS: Don Steinwachs, Johns Hopkins Bloomberg School of Public Health, member of the committee, no conflicts.
DR. VIGILANTE: Kevin Vigilante, Booz-Allen & Hamilton, member of the committee, no conflicts.
DR. ELO: Irma Elo, University of Pennsylvania, liaison for the National Center for Health Statistics, Board of Scientific Counselors, no conflict.
DR. SCANLON: Bill Scanlon from Health Policy R&D, member of the committee, no conflicts.
DR. CARR: Justine Carr, Beth Israel Deaconess Medical Center, member of the committee, no conflicts.
DR. HUFF: Stan Huff with Intermountain Health Care and the University of Utah, member of the committee and no conflicts.
DR. STEINDEL: Steve Steindel, Centers for Disease Control and Prevention, liaison to the full committee.
MR. BLAIR: Jeff Blair, Loveless Clinic Foundation, no conflicts.
MR. SCANLON: Good morning, I'm Jim Scanlon, I'm executive staff director for the full committee and I'm with the Office of Planning and Evaluation here at HHS.
MS. SQUIRE: Marietta Squire, staff to the committee, CDC and NCHS.
MS. PAISANO: Edna Paisano, Indian Health Service, staff to the Subcommittee on Populations.
MS. JONES: Katherine Jones, CDC, NCHS.
MS. PICKETT: Donna Pickett, National Center for Health Statistics, CDC, and staff to the Subcommittee on Standards and Security.
MS. HORLICK: Gail Horlick, Centers for Disease Control and Prevention, staff to the Subcommittee on Privacy and Confidentiality.
MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, committee staff.
MS. BURWELL: Audrey Burwell, Office of Minority Health, lead staff to the Subcommittee on Populations.
MS. HART-CHAMBERS(?): Jane Hart-Chambers, Federation of American Hospitals.
DR. BICKFORD: Carol Bickford, American Nurses Association.
DR. KILE: Frank Kile, American Dental Association.
MR. RODE: Dan Rode, American Health Information Management Association.
MS. GREENBERG: Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the committee.
DR. SONDIK: Ed Sondik, National Center for Health Statistics, and National Center for Public Health Informatics at CDC.
DR. COHN: Well this morning we begin with a briefing by Jim Scanlon on data issues and opportunities as well as learnings from the tragic hurricanes of last year, both Katrina and Rita and we're obviously looking very much forward to this presentation, it's been long awaited.
This will be followed by a presentation from Dr. Ed Sondik on NCHS data release and confidentiality issues for vital statistics. I know this has been an issue of concern both to the committee as well as the Board of Scientific Counselors of the NCHS and we're looking to an update on that status. As part of that presentation we've asked Dr. Irma Elo as well as Bill Scanlon to present an update on the activities of the Board of Scientific Counselors.
Yesterday we did welcome Dr. Elo, I keep introducing her but she's not around, we're once again please to have her again joining us even though she's not, tell her again that we're pleased to have her.
After a short break we will again convene to receive reports from the subcommittee and workgroups, this will continue during a working lunch.
And then finally this morning, actually early afternoon probably we will discuss future agenda items and meetings for the remainder of the year. I would have you note of course that there's a meeting of the Subcommittee on Standards and Security this afternoon which will begin immediately after this meeting adjourns, probably about 1:30, and I'm expecting that this meeting itself will be done certainly by noon, actually by 1:00 if not somewhat before.
So with that let's move to our first agenda item, thank you for being willing to present this and as well as lead the discussion.
Agenda Item: Briefing on Data Issues and Opportunities from Hurricanes Katrina/Rita - Mr. Scanlon
MR. SCANLON: Thank you, Simon, and good morning everyone. I'm going to talk a bit today about sort of the overall framework for public health emergency preparedness in the U.S., sort of how the whole structure is conceptualized, what the sort of the model is for the federal responsibility, the assumptions about state and local and private sector roles. I'm going to talk about the HHS involvement in the Katrina and Rita responses in preparedness, and I'm going to talk about emergency preparedness from the public health and medical side more generally, not just Katrina, because in many ways the Katrina incident was different and way beyond what the scenarios had envisioned for the normal public health emergency response, but I'll get into this shortly.
And I can preface my remarks by I feel a sigh of relief that the President has released, the White House released today the results of the federal lessons learned review of the Katrina and Rita responses, so that's now up I understand on the White House website, 125 recommendations. It deals largely with the federal response which involved all of the federal agencies, obviously the Department of Homeland Security and FEMA had a more central role, but that's now available and other federal agencies including HHS, of course Congress is looking at lessons learned and what happened exactly as well, so we're at a point now where while the focus is on recovery and rebuilding in New Orleans and the Gulf States everyone is looking at how can we do this better and how can we prepare better, how can we organize in a better way. So it's a good time in a sense to kind of think about what the data opportunities and how data and information technology play and can play an important role.
And I'll preface again with one other concept there, I think as you would see from the White House review a lot of things went right, there were a lot of very significant accomplishments in the response to Katrina, a lot of things went well. A lot of things didn't go well, I think many of them are systematic, so I think everyone is now looking forward, I'll talk about some of the HHS involvement and accomplishments. But clearly this can be done in a more organized way bearing in mind that the plans are usually the first casualty in any emergency so a certain amount of what appears to be chaos is always sort of expected, you almost have to plan for that, but there are clearly things that can be done in advance, I'll talk about some of them today from the data and the, both the data statistical and the data information technology side and then I'll talk about five areas, I think I have about five areas or probably more where just examples of where technology, the data on specific health facilities or more broadly on readiness could help in the future.
So with that let me start with the overall framework, I think I have a fair amount of time and please ask me questions, I really, this is more of an interactive kind of discussion then just a presentation.
Now in the U.S. there wasn't a lot of though to, there were always a lot of activity but it wasn't pulled together at a high level in terms of preparedness and response to public health events, bioterrorism events. Mother Nature can give us big surprises for example in terms of, besides bioterrorism and other kinds of events. This has always been part of the federal role in terms of emergency preparedness but I think the events of 9/11 really woke everyone up and I think it led to a number of statutes and other capabilities and it really more formally organized what are the expectations for a response to emergency situation.
The statute that created the Department of Homeland Security also outlined a process, a national process for how this overall response to major incidents like Katrina, other hurricanes, tornadoes, earthquakes, how they're to be handled. And they are pulled together in something called a National Response Plan which is available on the Department of Homeland Security website.
In the National Response Plan the roles of the federal government, the private sector, state governments, the communities themselves are laid out and in terms of the federal response though FEMA and the Department of Homeland Security have the overall coordinating role usually depending on what the specific nature of the disaster or the event may be the whole resources of the federal government can be brought into play and I'll tell you how that has to happen. But there are, the responses to such emergencies, and again this could be any, it could be a tornado, it could be an earthquake, it could be in a mass casualty kind of an event, there were a number of floods and hurricanes in Florida and in the Gulf States before Katrina, they were or less handled according to this scenario. There are very specific scenarios that are used for planning purposes that try to anticipate virtually anything that might happen. But again as I say when the emergency occurs the plans, you have to look at what's left and how you really pull everything together.
So as part of the federal response at any rate there are a number of what are called emergency support functions and these are the things that the federal government would lead and coordinate once the state or the community have asked the federal government to intervene. The whole assumption here, the basic premise is that such situations are handled, the first responders will usually be the community involved, or that part of the community or the county or the local government.
When that jurisdiction decides that, or foresees that this is clearly beyond their capabilities they literally have to ask the state, the state level, and this usually happens through the emergency management organizations, for assistance, and then that invokes the whole state capability and there are a lot of tools to help. And then at the federal level the state would literally have to ask the federal level in some manner, and this can be done the very first day, this could be done in advance of landfall for example but there is this assumption that the basic capability rests with the locality, including the private sector, all of the health care organizations, the other infrastructure support, communications, transportation and so on, it rests with that community. Then the state can be called in and then the federal government can be called in.
When the federal government is called in the response is organized according to these emergency support functions and let me give you an example. HHS is in charge when an event is declared for its emergency support function eight, but it's basically the public health and the medical care response. There are others that deal with transportation for example during an evacuation or so on, communications, both the public communications as well as the communications infrastructure in the area. There are others that deal with mass care, this is usually FEMA along with the Red Cross, mass care in the sense of housing, temporary housing and food, basic kinds of support, environment, public safety and security, and there are a number of other areas.
HHS is primarily involved in the public health and the medical care response and I'll tell you what that means and how that works. But HHS is also involved in the mass care housing and human services response which is FEMA and the Red Cross largely and then in recovery. And as you can imagine some of these are life saving kinds of operations, the search and rescue from the Coast Guard and others, but the whole panoply of the types of activities that would be needed for a response are outlined in the plan, they're organized in advanced, agencies know what they have to do when the declaration is made and the agencies basically have to come together around a lead agency.
Now to take the example that HHS leads, HHS leads the public health and medical care and that involves a number of functions which I'll describe. But when the emergency is invoked at the federal level HHS is basically in charge of coordinating and meeting all the federal response, and in many cases some volunteer efforts, it's basically to provide some basic public health support in the locality and some medical care support which I'll explain a little bit more.
Now the second role that HHS played which I think is more of an evolving role, the major focus in emergency response is the response itself, so it's usually life saving, it's usually immediate medical care. Often the scenario is one of mass casualties in which case the medical care, the trauma care capability and so on, and even mortuary unfortunately, even finding bodies, burial and so on, those are all part of the response.
But in the case of Katrina where I think literally there were probably one and a half million people in the New Orleans area, probably five million people affected by Katrina overall, where so many people were actually evacuated and so much of the infrastructure was destroyed or at least impaired, it's a situation that is somewhat different then the normal emergency incident where we would be, where perhaps one part of the city was hurt, the health care facilities and the emergency departments in that part of the city were impacted, but there would be surge capacity in the others so that there would be referral system, this would be done in advance, folks could go to other emergency rooms or other care settings. Nursing homes for example, if people had to be evacuated they could be moved to other capabilities, patients could be moved.
But in the case of New Orleans unfortunately the whole infrastructure, there were probably five or six hospitals that are still not operational and the people left as well, so it was kind of a different situation that probably had not been, could have been envisioned I suppose but the assumption is there will always be some local capacity. So there in the case I'll describe what we ended up doing in terms of medical care and it was more then just a support role there, it was much more direct involvement and supplementation.
As the emergency, the first responders think of human services and mental health and so on as first you save the life then you provide the support but I think what occurred in New Orleans, it shows that the human services, the mental health side of this was probably, arose very quickly and probably needs to be thought about, not just as after the emergency first response but actually as part of it. And in HHS as you know we support, HHS administers a number of programs that are benefit programs or service programs, they provide health care and health financing and so on, sometimes direct care, sometimes we pay for it, sometimes we provide funding to grantees who provide community health centers and so on. So during normal times we have responsibility for those programs that provide the assistance to, it's usually families and persons who need that assistance, and we have Medicare, Medicaid, the welfare program, SCHIP and so on in many of our community health centers and our substance abuse and mental health treatment resources as well.
Now those are sort of regular programs but in the case of Katrina and Rita and I guess in similar situations in the future they can be, again, they all have plans for what they would do in the case of such an emergency and they were all marshaled here at HHS during the emergency to help with the evacuees and the other folks that were impacted by Katrina. So when people had to leave New Orleans, or leave Louisiana, they ended up in Texas or Mississippi or Arkansas or Michigan or Maryland, they had no, as you'll see, obviously health insurance or Medicaid or something like that was, how you could possibly suddenly start the request for eligibility process.
So we at any rate HHS took a number of steps to make that transition a little easier, in some cases it involved waiving, granting waivers to the states to be able to enroll people, if you could demonstrate you were an evacuee you didn't have to have all of your paperwork. But if you were an evacuee from those zip codes you were sort of automatically enrolled in these programs. So not only did HHS support the first response, the public health and emergency response, and environmental to some extent, but sort of the human services response as well. And again, it was wherever the evacuees ended up, in many cases it was way beyond Louisiana, it was a lot of other states, those folks are still living in those other states in many cases and the states where they're living, and I think that we're probably at least 30 and maybe by now it's virtually every state has some evacuees from Katrina.
So again, I'll talk a little bit about the public health and the medical care mission, I'll give you some examples of what it was, and then we'll talk about the human services, and then I'll talk about how sort of in the technology area and in the data area where what sort of came up and what the needs were and how could we plan for this in the future.
So as part of the HHS response, part of the response is, and again normally HHS would, normally there would be local health care infrastructure, hospitals, physicians, clinics and so on, nursing homes, normally some would be intact and our role would normally be one of augmentation, consultation. But we do have the capacity here to, we can literally set up a 250 medical, field medical contingency stations which are meant to be, to augment what might overwhelm the health care system in that area. Unfortunately in the New Orleans it was less augmentation then it was actually providing these resources to begin with.
So at any rate the HHS role includes providing emergency health and medical resources, usually of an augmentation nature but in this case it was more fundamental, as well as supplies, medications, and staff, we actually our commission corps, public health commission corps, clinicians, and we have throughout HHS we have other clinicians and other public health specialists who were marshaled in this case to help. In some cases we had, so there's the basic response, part of the role was also augmenting medical staffing at our, in some cases providing the staffing directly at what we call federal medical contingency shelters, or special needs shelters, this is what I referred to. These can be up to 250 beds, they're literally mobile, they can be set up in a gym, in an auditorium, anywhere where it's asked. That's the equipment itself so it's a fully equipped field contingency station. But then of course there are folks, the medical staff and others who have to run this which we relied on, are some of our own commission corps folks.
Part of the response very quickly also became how quickly could you help restore the health care infrastructure there and the supply chain for example. Some of the private hospitals were able to use their own supply chain to keep their staff going and to get the medications and the other supplies that were needed, and some of the others just didn't, so it was a very hit or miss kind of a situation. And frankly it was hard to know in terms of situational awareness for a bit of the first few days what exactly the situation was anyway, what hospitals were still operating. The hospital may have been standing but the staff had evacuated, there were no folks there, so the situational awareness issue was an important one and I'll talk about how we got, we began to get information there.
The public health side was also a worry because you had a lot of water standing, you had other potential threats, environmental threats and other things to public health. So CDC worked with EPA and others, FDA, and they actually did an excellent of kind of assessing, you couldn't even for example send first responders in until the situation had been assessed, otherwise you were just creating more casualties potentially.
The environmental threats I mentioned, another feature of the HHS response was where we did have local say Medicare providers or community health center grantees or substance abuse grantees or area agency on aging grantees we actually were able to use some of them that were still operational to help with getting some of the infrastructure back operational. And then there were, this quickly moved beyond the medical care, it turned out this was not so much a mass casualty event at all and even when we set up probably half a dozen of our field medical contingency stations we were not seeing the kinds of injuries, the trauma and deaths that would result from an earthquake or a tornado or a mass casualty event, this was more, this was a different sort of event where people were, it was normal health conditions, those were the kinds of folks showing up at our contingency stations and at the shelters. Folks with chronic care conditions, folks who were just evacuated and displaced, didn't have their medications, had other chronic conditions, needed dialysis or so on, but it was so much a trauma care kind of a situation. So again, so our folks and the other medical care augmentation support ended up dealing with that.
But you can imagine, you've got folks now in large numbers who are, these are not trauma victims but they don't have their medications, they don't know exactly what they were taking, they don't exactly know what their medical history is, and they're coming to you, what kind of medications did I have, sorts of things like that. And there were actually some very nice things that were set up to deal with that.
Now let's see, the other, we were able to provide supplies through the strategic national stockpile. And as I said there was a role for evacuation but it was more a role of expertise and coordination with the Department of Defense and the Department of Transportation, they actually had the airplanes and the buses and so on to actually move people around. HHS is not a transportation agency so we have to watch what we actually commit ourselves to.
There were other assistance in helping to assess the infrastructure in the health related area, nursing homes, pharmacies and so on, through FDA and others, CDC, even the food establishments because these were all impacted and there could potentially be public health problems. And then on the preventive health side to prevent things from getting worse there was a focus through CDC, there were vaccinations provided free, there were other preventive kind of measures taken so that helped as well.
We also as I said in addition to the commission corps which the Secretary actually activated the whole corps and we ended up sending about 1500, 1600 commission corps, public health commission corps folks, to those affected states. There were a number of folks, other staff, civilian staff in HHS that volunteered and then there were a lot of folks who we set up a volunteer, a health care worker volunteer system and I think we got over 30,000 folks who came in and volunteered to go as well. So we arranged, that got much more complicated with credentialing and other issues but there was an excellent response and we even have a medical reserve corps which we can activate when needed. And then this whole focus on human services and our programs, wherever we could and whatever infrastructure we had and whatever staff we had in the area to try to get folks enrolled in our programs if they were evacuees or so on to help move it along.
Now that was the nature of the response, we worked with all of the other federal agencies and doing this we worked with FEMA, we worked with EPA, we worked with the Red Cross, so again this is a big coordination problem. But HHS generally focuses on that side of it.
Now after the events, Congress of course is looking at what can we learn from this in terms of the overall federal response. The White House I indicated earlier conducted a very high level government wide cabinet level review of the various agencies and there are a 125 recommendations, we'll have to look at those. Some of those will clearly relate to HHS, some will relate to the military's role, FEMA, how do you organize, is the doctrine of having this National Response Plan and the various scenarios and this sort of cascading assumption, how does that hold up and what changes do we need there. So all of those, even basic premises, were being examined.
The focus of these lessons learned review was not to necessarily blame and punish, it was to try to find a way of doing it better and we'll hope that it stays on that level. And there are a lot of ideas even within HHS of how even very simple things about we could do it better in the future.
That's kind of the overall framework for how, whether it's a natural kind of a disaster or whether it's man made, a bioterrorism event or something, some other sort of an event of large scale, that's kind of the basic structure for how it would be handled. It's kind of a playbook in a way that doesn't necessarily have a lot of detail. A pandemic flu for example would be, you could envision that could be one of the scenarios as well and in fact I think pandemic flu probably could be handled, at least we hope, just through the public health and medical apparatus, but if it ever did get to the point where it was spilling over into other, of such scale and scope that it was spilling into other areas it could be, it could fall into this category as well.
So you can see the array of scenarios that such a framework would have to deal with. Now we did find, I have to say as things came up they were dealt with fairly quickly and let me just describe some of the areas where things were kind of invented on the fly in the technology area or the electronic health records are or on the data area which we clearly had to do things very quickly but there are longer term kinds of implications for how can you do this in a better one.
The first thing, very basic thing, and I think you could almost say this in any emergency, it was most of a communications issue, even after 9/11, even after all this time the basic field communications, the technology and the capabilities were very limited and of course the power was down, cell phone technology was probably down, but a lot of the first responders basically had to rely on their personal cell phones to some extent. Some folks actually had satellite phones and radios and they did a little better but there still persists in this whole first response area this lack of interoperable communications, localized field operations, between and among the first responders, so that's more of a technology issue. The capability exists but again, to get this at the level of the first responder still a lot of work needs to be done and a lot of attention is being focused on that.
There clearly was, moving to the next step, there was a great interest actually and there certainly was a need for the kind of capabilities that an electronic health record could have, the idea of anywhere anytime some information about health care and health history and medications history. So many of the, when the devastation occurred in New Orleans and in the other states literally hundreds of thousands of people were evacuated, millions were affected and pretty much the infrastructure around New Orleans, the health care structure was I said was pretty much impaired and in many cases destroyed. The staff was gone as well, it was a much kind of a different situation then some of the other scenarios would have done.
So as I said there were a number of people who were showing at the shelters, they were showing up at hotels and other Red Cross shelters and FEMA shelters, who had normal, not trauma situations but normal chronic conditions, medications to take and so on. But again, they didn't know, they were showing up at shelters, they didn't have their medications, they were having reactions, and it was hard to kind of get, well, how do you even reconstruct this, how do you get the medications and so on. And even when they showed up at our own commission corps manned and other volunteer manned shelters, again, the same situation, large numbers, they were without, didn't know diagnosis, didn't know medications.
So one of the first things was to sort of to try to deal with this situation, I'll tell you what was done but I think this is clearly an opportunity where some very basic kind of field emergency response, electronic health record, it doesn't have to be a full blown capability but some very basic capability was needed here. All of the medical records were destroyed of course, we heard from our lawyer friends that a lot of legal records were destroyed, they were kept in the basement of the courthouse or other places --
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MR. SCANLON: Now HHS is not in charge of the legal response plan --
Now interestingly there was a very interesting response to the kind of mini or light web based electronic health record for the medical history at any rate and this was not, this was something that the industry really rose to the occasion here. And very quickly, this was while folks were still at the centers there in New Orleans, it was Katrinahealth.org, I think some of you have heard about this but basically a group of, various groups including chain pharmacies and PBMs and some of the biggest, RxHub and SureScripts and others, they actually, now much of this capability existed, to be fair, in advance, but what they were able to do was to set up a secure online service whereby the physician who had the patient in front of them could actually check into a website, Katrinahealth.org, and they could actually if authorized, and they were literally authorized on a face to face kind of an interaction there at those centers, and now more so in the community, they could log in and they would access to the medication history, I guess I should say the prescription history that was available online from these various groups, the PBMs and some of these big networked companies actually had as you could imagine a fair amount of information so in many cases a match could be found. It was only by authorized, by clinicians and later pharmacists, but that actually was set up fairly quickly.
It wasn't federal sponsored, it was really HHS sort of helped bring the parties together, but the Markle Foundation played a role and a lot of other groups played a role. I can give you a flyer on what's happening, I think it's still operational, now that the evacuees are in other parts of the country you can still, you can go to that even now and see, you have to be authorized, this is not for anybody to check in, you have to be authorized. The AMA actually helped with some licensing and credentialing so someone who poses as a doctor it's not going to work, there are ways to authenticate. But that was kind of done very quickly, it's still operational, that was an example of how sort of for the need there it was met fairly quickly.
But obviously that, the whole idea of emergency preparedness is to prepare in advance and have these capabilities in advance, so this concept of, and actually I think this will be coming out of the President's, the White House review as well, this capability for an EHR light or field EHR or first response EHR was a very strong sentiment and I think that HHS and others will be asked to look at this, evaluate what kinds of capacities are already available and the mediation history but other things as well, and to look at what might be available now.
The VA was able to keep up its VISTA system if the hospital was still operational, so for that that worked okay, but that probably doesn't really apply to anyone else and the military of course knows how to do this but that's a different situation too. Field records, field medical records are, the Army knows and the other forces know how to do this but again that's not all that applicable to this kind of a situation. So I think there will be a look at and there will be an evaluation of what kind of products may exist now that as they are or with some develop could be thought about to meet this kind of a need.
And now let me go back to the critical health care infrastructure data because this really came to be a real problem.
MR. HOUSTON: An adjunct to that too would be not necessarily EHRs but I think that there might also be a call for PHRs because I think a PHR, I mean it's going to be voluntary, the patient would have to decide that they wanted to establish their own record but it might be equally effective, it might be also I think based upon the current state of the industry might be easier to implement, so just a thought to know how much of a campaign you'd want to have towards use of PHRs and encourage people to establish them, especially if they have chronic conditions, but it also might be helpful in terms of trying to recover data --
MR. SCANLON: And it might make more sense, it might make more sense, certainly our vendors now who offer these services where you can put in your allergy information and your medication history and so on, but yeah, I wouldn't even presume that it's necessarily an EHR but I think that capability to be able to reach this kind of information, that's not anywhere any time --
MR. HOUSTON: Patients may not remember their medications but if they had a PHR they could --
MR. SCANLON: Or their problems, their health problems, and medication allergies or allergies or anything like that, but that kind of information, you can imagine a patient walking into you who you don't know what medicines, they're an older person, you don't even know where to start, they're in shock to begin with. So this is just something to be able to rely on or for picking up the emergency response fairly quickly. But clearly that will be a direction and I think some of the ideas that the committee has had in the past in this whole area, for this specific situation, I think there will be a lot of interest in moving forward.
To go back to what we call the critical health care infrastructure itself, the hospitals, the nursing homes, the ambulatory care centers that were in the area, one of the first things, this came in 9/11 in New York as well, it was very important in planning the HHS response and other federal responses to kind of know the status of the facility, say the hospitals first of all, but the other health care facilities, the nursing homes and others that were sort of, were they operational and if they were what serves were operational, what was the staff capacity and so on. And that got to be, that was very hard to do, there was no system in the U.S. at least that we were aware of that actually could give you the daily operational status, even of hospitals, even though this is part of any operation quite aside from federal requirements is the ability to have preparedness and continuity of operations plans. And probably most of your organizations do have those, I hope, what happens in the event of an emergency, how do you keep operating, what are the plans and so on, and particularly hospitals and nursing homes where you may in fact have to move people, you may have to close operations, you may have to move them somewhere else.
But it was very hard to get any kind of data on this, we ended up, it was needed badly so we looked at, with our emergency preparedness office, we kind of looked at what vendors had and it turned out that one vendor had purely in Louisiana and then the Gulf region had a system that, and it was a subscriber system, the hospitals had to be part of it, but they actually reported information on operational status to some extent but also on patients seen and the nature of the, the number and the nature of the problems they were seeing.
Now there was obviously a denominator problem to begin with, all you're seeing is the folks who are coming in, it's hard to know whether, you have to use this kind of information very carefully. But even the most basic information about is the hospital open, if it is open what's, is the staff there and so on, it was very hard to get. We ended up actually relying on our first hand reports, our commission corps folks and our other folks we had in the field and with the local health department and the state health department and the Louisiana Hospital Association, we ended up kind of getting some of the information there and we sort of bought into this at least temporarily this critical, it was called Critical Infrastructure Database. But it was very local, it was regional, and the information really was not as useful as we needed it to be. But nevertheless, it gave you an indication, it didn't really tell you, in this situation you had to know what was the operational status and capacity of hospitals in other areas where the evacuees had gone, Texas and other places, so it was not quite as helpful as it could have been, it was very regionalized, but it was an opportunity and we used it and it was actually turned out to be quite helpful in informing the overall response. But I think for the future we are certainly looking at in HHS and I think the committee could help is there not some other system, is there not some other capacity, is there not some other requirement or reporting where at least hospitals and emergency departments report in, and this would have to be nationally, it doesn't do any good to, you have to guess where the next event will occur so that really was needed and I think the department is now looking at a very basic, what the requirements would be.
Now how you actually implement this is, I think we're just open to ideas but this basic notion about at least for hospitals and perhaps other facilities, how can you more or less on a daily basis know what the operational status is. So again, we created a system on the fly, we really within about two days we created this and it was actually quite useful but you could see why you'd really want to plan this in advance as well. And that was facility specific kind of information.
Let me turn now to the broader, on the human services side more generally. Another kind of issue that, as I indicated this quickly turned into less a trauma and emergency care situation then basic human services, mass care and so on, and getting people relocated and getting some basic medicine and so on.
So after that initial response on sort of the emergency, the lifesaving, the public health, the medical trauma type care HHS was asked to come in and help with the, to be sure that the evacuees were getting, to the extent we had programs that could help Medicare and Medicaid and if SCHIP and so on, helping with older person programs as well to be sure that those could be brought in to help the folks wherever they were, Louisiana, Mississippi, Texas, but in other areas as well. So as I said the response really was actually very quick and it was to remove and make it easy for these folks, for evacuees or other folks impacted, to really remove all the administrative barriers, normally all the paperwork barriers, if you were walking in and trying to apply for Medicaid, even in your own state it would be quite difficult but if you're now in a neighboring state and you're walking in with no documentation, normally under normal circumstances it would have been, understandably it would have been difficult to do. So at any rate we granted waivers, we worked with the Medicare providers, we provided, during the process we actually go I think almost two dozen additional community health centers to be able to extend some of their services to these groups and we'll be creating new ones as well.
But that was all done in terms of the response itself so naturally, well, how well are we doing, who's getting signed up, who's not getting signed up, a very basic question where are the people and that was a real challenge. Again, the department was asked to can we find out in some way sort of how we're doing, how were programs, let's see Medicaid would be one, welfare would be another, how we're doing in terms of reaching these people. And so we were asked to set up some sort of an assessment and monitoring system very quickly and we had one within two days, set up something, and again I wouldn't, I think this has to be thought out in advance but we literally had, we literally had the states and our grantees reporting on a 48 hour basis sort of how, were they seeing evacuees and were they able to enroll them, how many were they enrolling, what was the waiting list and all this sort of thing, so how was it, where were they and this sort of thing. So we were actually able to report on sort of every two days basis in terms of planning so we could see where we were doing and where we weren't doing well.
And then we kept that going for sort of on an every two day basis until about, really we kept this going and then stretched it out for a while and we finally ended it in December but again, this was an area where we created a system on the fly though I think it was really, it was hard to do, people who were responding to the emergency were also trying to report, well how many persons were enrolled in Medicaid who were evacuees and so on, so it was kind of hard data to get but we got at least indicators of what was happening. But again there too I think something more systematic would be needed about how we know how many people are enrolled in Medicaid sort of at the end of the month and we know how many people are on a daily basis know for Medicare, for SCHIP and others, but there really was no way to tell how on a quick basis when the need was developing on a daily basis how well are we doing and how is it working and we were able to get the services and the resources there as well.
So there it's more on a population statistic side, evaluative side, and then it was difficult to know but there was also an interest in how many, do we know how many, sort of on a person basis do we know how many folks are getting all of these services or some of these combinations with other agencies, with food stamps and so on, that was much harder to get so we had to make some extrapolations and do some actuarial analysis I think it's called. But at any rate, I think something like that human services aspect of it I think we really need to think about in advance so that before the next, before the hurricane season comes in June we sort of have a little better idea of where this is going.
And then finally, do I have another minute? The focus now is on kind of the overall, what was the overall impact, besides the lessons learned, the rebuilding and the recovery and there are a number of activities. The federal government is putting a fair amount of money into the rebuilding, obvious a lot of this will be private sector as well, but from the HHS point of view the interest will be both on the health care infrastructure side of this and on the human services toll. What happened? Where are the people? Where are they now? What's their situation? What are their plans and expectations?
And this is a more complicated kind of a situation but we were fortunate, our National Institute of Mental Health actually, which actually does a fair amount of emergency preparedness research and provides tools and capabilities for the response itself, they actually made a grant to Harvard Medical School, but this had been in the works for a while, and they are now following-up, it's a major study of 2,000 Katrina victims, now 5,000? And part of the sample is folks who were in the New Orleans area, and whether they moved back or whether they're in other places now, and others were from other parts of the Gulf, Mississippi, Alabama, Louisiana, who may have moved on.
And it's kind of an interesting, Ron Kessler I think, some of you know Ron Kessler, and Ron is doing, he's the principle, he's the project director, and they call it the Hurricane Katrina Community Advisory Group but it's actually, so these folks are both advisory, they're providing sort of oral histories of what they're experiences were, they're going to go up on the website, but then it's a very structured, they're telephone interviews from lists, well, mixed list of where these folks are, wherever they are now, some in hotels, some have moved to other states, some have moved back. And they're interviewed I believe it's quarterly, every three months via telephone, the first interview, the baseline interview as they call it is just being completed now and some basic data I think in, I kind of forget but within probably a month or so, April or so, we'll have some basic tabulations of kind of their basic demographics, their situations, now whether they're employed, what kind of housing they've got, basic health kinds of issues.
HHS has asked, well, we invited other federal agencies to participate rather then creating their own surveys and it actually worked out reasonably well so other federal agencies are looking at for housing for example, employment, educational issues, child welfare issues, and so on. But it's this basic platform that we're now using and we can add to this, we can add additional samples, we can extend, this is a two year study I believe, we can extend the time, we can over sample groups, we can do special populations, they're now open to that, it will cost a little funding to do that but in general we'll all get the basic information, it will be public information, and it will be available on their website and then later.
But again I think so we're using that but I think in a way we were fortunate that the NIMH had kind of was in this position otherwise we would have been creating a new study, and we did create a workgroup of the federal agencies to kind of look at this and how do you even start, this clearly is an imperfect kind of a study, I don't know what, I guess the mathematical statisticians would be arguing what does it represent generally but I think it's about as good methodologically as one could do and I think the information will be very helpful.
But we asked the Census Bureau early on before this was available, this study, and even the Census Bureau which probably had the household information before the hurricane, they just, it was very tough for them, they could probably reconstruct what the demography was in those areas before and they're actually working on that but now tracing them, finding those folks now, even with access to the FEMA assistance list it would have been very difficult because those are only some of the folks who were involved. So this turned out to be kind of very timely and a good study, it may be the best anyone could do and other federal agencies can be adding more questions.
So that's just kind of a short overview, there were a lot of other data issues, obviously the time to plan these things is before the events occur, the hurricane season is only 90, 100 days away, but think of any event, a tornado, an earthquake, a manmade event, a pandemic kind of a situation, all of the data issues and technology issues that really have to be thought about in advance.
DR. COHN: Well I think I'll let Don maybe take the first question, I'm wondering what it may be --
DR. STEINWACHS: Sort of I guess two levels, one, Jim, you identified the challenge of trying to look at the health effects for disasters, manmade or otherwise, and I think it would be useful for us to hear from you and maybe something you would see doing in the future about where you see this committee and the Populations Subcommittee or other committees here being helpful on that. The other day the Washington Post had an article about death and sort of the observation looks like as many people are dying in New Orleans but only a third as many residents there and so the sense that the mortality rate is way up. And there's a lot of reason why you think it might be just because of both the problems in health care, social support and other things. But that to me seemed like another area where data linkages and things in concept we ought to be able to do, is both follow the people who've left the area as well as those there to answer the question of is there excess mortality, how great is it, how long does that sustain over time.
MR. SCANLON: There's a whole set of sort of follow-up health effects questions and all sorts of other things, economics and housing and so on, but one thing and the Populations Subcommittee has already talked about this, I think we are really, we're clearly interested in knowing a bit better about, aside from the technology issue, on for example hospital preparedness. HHS has probably poured five billion dollars over the past few years into the states through the CDC and through the hospital preparedness program to strengthen and expand the capacity for hospital preparedness, and we still don't have, I mean we have some indicators and of course the first priority is to get this capacity moving but I think we could clearly. if the Population Subcommittee could help us, we clearly need some better reliable sources of data on hospital preparedness.
It could be on a sample basis, clearly that helps us know generally, but even on a specific basis what are the, I have some of my folks looking at and there's clearly literature on what does it mean, what does hospital preparedness mean for this whole panoply of potential threats. It's often the emergency department but it's not limited to the emergency department, there are a lot of other things that need to be, in terms of equipment, are there other parts, there are specialty hospital issues.
But I have some folks just sort of looking at what's in literature starting out and then how would you measure this, how would you measure this and monitor it and then how would you, are there standards for best practices and what are the data sources. So any help the Populations Subcommittee could give us there maybe in terms of a hearing or looking at what's, that would be very helpful, it would be something we could turn into very helpful information.
Even on a statistical level but certainly, and I think we were talking earlier, the NCHS, we were actually thinking about this a while back and we asked the National Center for Health Statistics to add some questions on emergency department preparedness and that was the best thinking but it was probably three years ago. And they added those questions to the emergency department survey and we actually have a nice statistical report that's probably 2004, I'm forgetting, but that's sort of what the thinking was then.
And one of our other HRSA, which actually administers this program, I think they try to get measures of how, where the funds are going and they did, I think they were planning a survey, it was somewhat of a web based survey, but I think looking at those and then looking at what other data sources and what other measures, how do you really measure this would be very helpful to us.
On the human services side it's very difficult, I think the committee may want to have, we could certainly arrange this, have Ron Kessler come in, just to sort of talk about how they're approaching it. There are not a lot of, we've been trying to see who else is doing things and there's a lot of activity, Brookings has set up sort of the economic, they're trying to track the recovery, Brookings, and so they have, what they are pulling together is sort of the available economic and local area economic indicators, construction and so on, not a lot of health variables just yet.
But we would ultimately want to be, as you say, Don, now again, it's complicated because of the population is no longer, the population is now so dispersed so it's a little trickier methodologically but we do need to see what, in a sense what's the situation now, what are the expectations, do people plan to go back, what's the housing now, I think we've asked the Harvard Study to include questions about for health care medical care medications before, during and afterwards and usual care type issues. Others are interested in housing, others are interested in education and children, so there's just, so much information is needed and again it would be, not only to understand what happened but to help plan the return or the recovery effort and so on, lot of methodology challenges as well. So there may be we'd certainly be willing if the committee was interested we could arrange for Dr. Kessler and our NIMH folks to come in and talk a little bit about that and then you'd see sort of what they're getting.
Now the mortality part of it, Don, you raised a good question, I don't know that the study, I don't know that anybody is really looking, certainly people will at the mortality experience afterwards and is it proportional or is it what you would expect, that would actually be an interesting look, I don't know that anybody is actually looking at the data itself. And then the health care use, the health care use afterwards and the kind of problems we're seeing. The study that NIMH is funding will help with some of that but it's a fairly small following morality for 2,000 or 5,000, we might actually want to add to that but that's a small population, you don't get that many deaths normally.
DR. COHN: Kevin you're next, then Paul, then Justine and then we'll need to wrap up this section.
DR. VIGILANTE: This is fascinating, thanks for the report, Jim. I mean it really underscores some of the sort of underlying problems in all of these events and there are two really that are major themes, I mean one is infrequency, in health care we're good at what we do because we do it every day, it's the essence of specialization, and it's very hard to do things well when you do them rarely and that's just the nature of these events and some of them are even more rare then others, earthquakes and hurricanes happen but bioterrorist are even more rare so that's one problem facing us all the time. And the other is uncertainty, each one is unique and how they unfold is very unpredictable. So you have these two sort of dominant vectors here that really undermine your ability to respond in many ways and there were plenty of plans for this and the issues is already around execution and a plan sitting on a shelf that hasn't been practiced, you say a playbook but even playbooks get practiced and then you play the game on Sunday and so it's not the same here.
So actually what really is very important is the term you mentioned earlier, situational awareness, what is going on now, and that requires information and that requires data. At the most fundamental level these things are just not available in the midst of an event and I think this is a core question here is how do we make, what data is it that we need and how do we make it available, is really sort of, even communication systems between first responders remain as you said not interoperable, basic information about how a situation is unfolding from a surveillance point of view is often not available and then what assets you have to respond, again not available.
So I'm repeating what you said but I think those elements really, and the notion that, I guess the point I'm trying to make is that you're never going to be adequately prepared because of the nature of these events being infrequent and uncertain and so communication intra-event, information intra-event so that you can respond in an adaptive way is actually the essence of a successful response. And unless that data, unless we identify that data and make it available and provide means to transmit it we'll never respond adequately and I think therein may lie some of the contributions that this committee can make.
DR. TANG: Jim, I thought that I as a very thorough and fascinating report and food for a lot of though as I'm sure all the other committee members thought as well. It's interesting, Simon, at our NHII Workgroup yesterday, just like Dr. Brailer invited the committee to participate in certain ways I heard a clear request for what are the crucial elements that could help kick start taking care of mass need and that was sort of like the minimum PHR that was in some way accessible, always accessible. So our top two priorities yesterday were really what's the data priorities and what are the implications for privacy because I think they go hand in hand. If you're going to make something available on demand then its also got to be protected.
I wonder if there's a way to be able to use that available minimal PHR in an anonymous fashion to play some other surveillance role. If you know what's being needed and accessed in a sense you actually sort of know a little bit and you could even get some geographic information about what activities that are going on if we have an appropriate way of de-identifying it and using it as population studies, you could also watch accesses go out provided there was this useful service. So I thought that really speaks well to the priorities we set for NHII Workgroup.
The question I have is on the hospital resources, I thought in the emergency medical system don't they every day or perhaps even more frequently report on your availability of emergency, ER services, because you have to put ambulances on diversion when you don't have those services available? Is that something that --
DR. VIGILANTE: It's very local and it's very crisis driven, in other words you start counting when you find out that you've run out of beds and then people start, have their own individual diversion sort of protocols, we had ours in Rhode Island --
DR. COHN: Well, and other places, a region will have a diversion protocol but usually when you're not on diversion you aren't reporting that you aren't on diversion, you're more reporting when you get closer getting ready to divert.
DR. TANG: It seems like there's some nugget that you could build upon and perhaps include other resources, I remember at least when I was at Stanford you had the resources, you know how many beds, you know how the hospital census, and you use that to calculate your diversion --
DR. VIGILANTE: Yeah, but the thing is that you know, the question is how much, how many patients above your capacity ought you be able to serve, that is the question. If there was an event let's say in this case in New Orleans in which you wiped out your hospital infrastructure and you envisioned different concentric rings of capacity moving outward, if each one had a surge capacity of I don't know, ten, 15, 20 percent, you could distribute patients in a predictable way. But in order to be able to surge that much you have to be able to plan ahead of time and you're not going to plan for it unless you know what the objective is and these objectives actually don't exist in a uniform basis now.
DR. CARR: I had similar thoughts to both of you but we've had a number of sort of local catastrophes, both at our hospital and in Boston, and this ability to count beds and to count headboards and to count PAKU(?) recovery spaces for your surge capacity I think is very much worthwhile and we've had to know that, just recently a hospital's boiler blew up and they called us how many beds can you take, so we now know what are the potential spaces that could be used for a critical care level patient, a routine med surge, and that's different from ED diversion. ED diversion could be called upon when your hospital is empty but you have five crashed in the ED, so I really applaud that and I think that knowing that on a daily basis is extraordinarily helpful.
My other observation had to do with what Kevin was saying in terms of situational awareness and I'm just reflecting as I heard you take us through this even from your first comments that once locally we know we can't handle it we turn to the state and turn to federal, but I think the knowing is the main thing and I think in a way being CNN watches we could see in 9/11 that Tower One went down, Tower Two went down, and the Pentagon, and then people had to start thinking about Flight 93. And similarly with the tsunami we knew Bana Achi(?) was going down but someone had to be thinking about where else that wave was going. And having been in a couple of, again, sort of minor by comparison crises, when your computer is going down in the lab you're thinking about do I have to call these results but you may not realize that your entire computer system has gone down.
I'm impressed with the role that the media has played in terms of bringing home exactly this is what we think is happening but the man on the street is telling us here are the other issues, a lot of danger is happing in our shelter or whatever. And I think also in that situation you get a kind of brain freeze anyway because you're getting so much information at you and you may not be having the situational awareness. And I'm just wondering about that role of who is the person who's looking at all these things saying these are connected and it's a much bigger, or we have to escalate before the local person thinks they have to call the state, that someone realizes this isn't state, it's national. I mean it's like the biosurveillance now as we look at three head colds a the NCVHS meeting might actually mean all of Washington, or something like that --
-- [Laughter.] --
DR. COHN: That sounds like a comment.
MR. SCANLON: Just in the whole preparedness side I think and interestingly enough a lot worked well, one floor down from us which I can show you is our emergency operations center that they monitor, there are folks there monitoring any potential, they watch CNN and they watch the others too, but there are other sources of information and they can see something, they watch weather forecasts, in this whole area, preparedness, you do try to be able to anticipate and there are a lot of pre-positioning as well, getting things ready where you know it is going to happen and how it will all relate.
But again, when the event happens depending on the scale and the scope it's, you're almost starting again and you're relying on your training and your preparedness and your resources for, now it's a new situation, what can you bring to bear. And frankly if New Orleans, the hurricane actually missed New Orleans, I mean the hurricane itself actually kind of skirted, and I think to some extent some folks thought whew, we dodged another one.
But then you saw what happened with the flooding and that was the devastation, and some of these things can be anticipated and the more we do of course, the more preparedness the better we are, but then you rely on, you take the situation as it is, a fair amount of pre-positioning, there were a lot of things, there were medical supplies, there were folks from virtually every department in the state and others pre-positioned in terms of helping when it passed. But I think just the scale and the scope of this one just kind of overwhelmed everyone and then it was a mess when people left at any rate and the infrastructure was destroyed, then you really are trying to deal with the situation.
DR. BICKFORD: Carol Bickford, American Nurses Association, you've been talking about the health care facilities, you've been talking about the patients and the communications, but I haven't heard any discussion about those who are serving in the caregiver role and it's going to be critical if we end up with a pandemic because they will be the first line to fall, so I raise that as an issue and it was clearly an issue for those of us in the nursing community, where are the nurses, how can they get there, are they qualified to practice similar to the fake doctors. So what's being done to consider that part of the infrastructure and that part of our human population who is going to be subject to the stresses and also the disease, if that's an issue, or the bioterrorism? We're going to fall just like everybody else.
MR. SCANLON: No, it's true, it's true, and the pandemic plan, you can all read the pandemic plan on the HHS website, but the issue of the health care workers, again the pandemic you can envision a worst case scenario, which we always have to do just to prepare for the worst, but again the health care worker, I think Carol raises a good issue, the capacity itself for the health care workers, even if the facility is still standing, but how do you prepare for that, by the way that's part of hospital preparedness, it's part of nursing home preparedness, it's part of health facility preparedness. Again, you plan and then you have to deal with the situation. We do have reserve, I mean we have reserves there but even calling up these sort of supplementary national disaster medical assistance teams and so on, obviously what Carol says is true, the health care workers are going to be victims just as much as anyone else.
DR. COHN: Jeff I think you have the last question and then we'll move on to our next area.
MR. BLAIR: I think it was another aspect that happened there and I sort of have an array of questions that come out of looking at it from this other perspective. And I'm not sure my numbers are right, I mean it's what I hear off the media and sometimes it's accurate and sometimes it's not, but I was hearing that over 200,00 people from New Orleans wound up in Houston and Dallas and San Antonio and Tyler and all those places and yet once, there was some difficulties but essentially it appeared as if their needs in one way or another were being met and the questions that I have are were they able to absorb those folks in a short period of time because of advanced planning, was it at the state level, was it the municipal level, was it the hospitals, was it the clinics, was it public health, was it private communities, the churches and the synagogues and all that stuff. The little pieces that I heard was that a lot of it was private sector responses, that the state itself wasn't the real key as much as the municipalities and the private sector. In terms of lessons learned were there things that were done right in absorbing 200,000 people that are helpful there?
MR. SCANLON: Oh, absolutely, Jeff, I have to say that the neighboring states and communities in many cases were very, and this really is the nature of the response, I mean the local communities respond first, there were a lot of faith based organizations and churches that helped out. But Texas for example and Houston, it was the mayor of Houston I think who actually indicated that they would be receptive to helping out their neighbors, Florida did something similar. Now they couldn't, again this was such a scale, that happens all the time by the way at a smaller scale if needed in emergency situations, the charitable, the faith based community, the charitable organizations, the local communities and then, the State of Texas and others actually did a number of things, they were able to get waivers, they enrolled people in their state Medicaid program and in the SCHIP and other programs. And a lot of these folks who were evacuees really needed that kind of support.
But no, it really takes everyone, the Red Cross, the National Response Plan envisions everyone participating, it's not a federal response plan it's a National Response Plan and I think there were a lot of very positive things and accomplishments, communities rose to the occasion when they helped out, neighboring states helped out, in some cases states quite far away helped out and they were often private efforts where they were able, there are still folks living, there's still evacuees from the Gulf States who are living and they may in fact stay in the new communities that they've got to. California, I don't think any state actually was out of bounds, I think everyone, there are probably evacuees in almost every state. But you're absolutely right, I think if you relied only on what the public sector was able to do, certainly did a lot and it kind of creates the climate, if the mayor had said we don't want anyone here, or we have troubles of our own, that was have created an entirely, but really I have to say people rose to the occasion, in Florida and in Texas and in other places and they kind of welcomed the folks there.
DR. COHN: Jim, thank you very much. Actually I was reminded last year when I, I would frequently call and leave messages, being in California obviously it gets late in the day and inevitably he was there very late in the day every day, as well as answering calls on Saturday and Sunday, so obviously we really appreciate you for your leadership on this and obviously I think we're really looking forward to the work of Population Subcommittee as they try, once again we're not the experts in disaster preparedness but really do play a valuable role in the place between communication and data, how all this plays out, so once we keep that focus.
Now Ed, we're pleased to have you, I didn't know if you wanted to make a comment here or if you want to just launch into your discussion --
DR. SONDIK: One minute if I could. With my National Center for Public Health Informatics hat on let me say this is very much a discussion, very much appropriate, and I'm with that hat on interested in the guidance that you all can provide to us, exactly the points that came up here, particularly sort of the dynamic emergency capacity type of thing is very much related to the bio sense activity and the bio which is currently going on in the broader bio surveillance initiative that Dr. Brailer's office and the Secretary personally, and I'm sure that you heard about that yesterday, I take it you did, all of that is very much related to what we're doing in Atlanta. We're really moving I think from a fairly narrow view of how you address the informatic side of disasters of one sort or another, whether it's natural, manmade, to a broader sense of more readiness and the like and it's very clear that we've got, continue to have a long way to go in that.
But I must say that this initiative from the Secretary's office, Dr. Brailer, is moving things along much faster then I've ever seen anything move along frankly and I think getting the right guidance is going to be very, very important, so I look forward to that.
I just wanted to say on the NIMH study it is 2,000, you were right, 1,000 from New Orleans but 1,000 from outside New Orleans, and as when we heard Ron Kessler talk to the Data Council he emphasized that point that in a sense New Orleans seems to be getting the interest and the focus but in fact this was a disaster well beyond New Orleans and as Jeff just pointed out different communities somehow reacted in different ways. So that study is going to be in a sense doubly valuable because they have the two cohorts although they're not extraordinarily large but it's a major step in doing that.
I'm not sure you mentioned Katrina.net, did you mention that? Katrina.com, did you mention it? Okay, well I just wanted to make those points, that was a terrific report. Thank you.
It's 11:00 --
DR. COHN: I don't want you to worry, I've already assured everybody that we will get out on time and we will have more then enough time to handle this discussion in an appropriate fashion.
DR. SONDIK: Thank you very much. I wanted to come and discuss a couple of topics that have come up related to NCHS and NCVHS and these are the confidentiality and data release related to the vital statistics, that's the first topic, and then secondly I'll talk briefly about the Board of Scientific Counselor's review of the mortality statistics and Irma and Bill will also join in this. So let met move through this relatively quicly and there are a lot of words on these slides and for that I apologize, this to me is fascinating in a way because something came up in a sense out of the blue, this doesn't relate to Katrina, but does relate very much to the ongoing and growing issues related to confidentiality and the release of information.
So let me tell you first what our policy has been related to the release of the vital statistics and emphasize as far as we know there's been no known reach here. The issue here has been that the states have asked us to review the current policy because of their concerns that the policy is at variance with their own laws, regulations, or their practices, and this, I think I mentioned this perhaps last year, came up now I guess about two years ago so we're very much involved with this.
So the current practice is that the public use file includes lots of variables with these restrictions here in yellow, no exact dates are provided, instead there's the age of the parents if it's a birth, or the decedent and the month and year of the event, it's not the exact date and this point is made over and over. And that the geography in this file is limited to counties, in other words it's not more specific then to counties and cities of 100,000 or more, so if it's 50,000 then it's not included in this or could be included in an aggregate but it's not included singly. And there's no restrictions on the use of the public, or on the public use file, it's open to anybody.
Now there are a variety of special requests that ask for the production of custom datasets, and we do that and in that we'd have smaller geographic units and perhaps exact dates and these are reviewed internally within NCHS. And for federal agencies for ask for a data users agreement, a signed agreement. For non-federal requests, researchers, are referred to our research data center where in effect they can get essentially the same information but they can only use it in a limited environment, in a cloistered I guess environment. And that research data center we've talked about I think before, it allows access for a fee, relatively nominal fee except for graduate students and the like, in fact we're actively considering, we've had a group, internal group review the practices related to the data center and we're considering really all aspects of it including the fee which is really tough on the student side but is actually quite nominal for somebody who has a grant, even a modest grant for that matter. In any case it allows a secure environment with a computer, with a stand alone computer at NCHS and no one can leave without having the contents of their purses, etc., inspected.
There's other vital statistics information, in fact the major tool as far as I'm concerned anyway for accessing this information, the one I use is actually the compressed data file that's part of CDC's Wonder, and the file itself is also available on CD-ROM but I tend to take the easy path because I generally ask only very easy questions and just use CDC's Wonder. If you've never done that it's actually pretty straightforward, it's not exactly the most up to date kind of user interface but it actually works well.
So to come back to the issues, the single issue here is that this policy in fact may not fit with state laws which say that in fact a detail of any sort simply can't, some states, simply say that none of this information can be released except in the most aggregated form. So we are proposing four types of releases. In essence they are not different from what we're doing now but there are some crucial differences. And we have made this proposal the to NAPHSIS(?), which is the professional organization of vital statistics registrars, the National Association for Public Health Information Systems and Standards, something like that.
And there are four of these and I'm going to go over them very briefly, the first has to do with WONDER(?) and this is the detail on WONDER, it provides aggregate counts but suppresses cells that are less then or equal to five and the population, it suppresses everything where the population is under 100,000, that's really no different then our public user file. The WONDER system includes not only mortality but it includes birth files as well with essentially the same restriction. It doesn't provide any more detail though then simply the counts on this basis.
Secondly we're proposing a new public user file which differs from the one we currently have but only in one dimensions, but that's a big dimension, that's geography, and we're proposing that the file not include any state, county, or city identifiers whereas it currently does have all of those identifiers down to population groups of 100,000 or more. And that we would make this available for births, deaths, fetal deaths, and the linked birth and infant death file.
We're also proposing this as number three, these are added, we're proposing all four of these, that for individual, that we would produce individual level files for non-federal researchers on a custom made basis. We have to have a signed data user agreement, there'd have to be a review here by an NCHS committee, including, this is our proposal, a NAPHSIS representative with veto power. It could include state, county and city codes but not exact dates, that's why I made the point before, and as we have done in the past, we being NCHS have done in the past for certain data files, we would ask for the return of these files within a year although the time could be extended. But one of the concerns with data files, sending them out, is they have a way of moving, even though there's a restriction in how they are to be moved, how they are to be used, somehow they have a tendency to move along, we've learned this in the very distant past and I'd hate to see it happen in the very near future, so that's that proposal.
And then the fourth alternative or, it's a proposal in addition to the first three so it's really not an alternative, has to do with individual level files for federal agencies. And again we'd have a data user agreement and this could include all of the information, all of the specifics, including exact dates. We would though ask for the files to be returned within a year with the same idea that the time could be extended.
So the current slide shows again these four types of releases, really not very different from what we currently do, other then the fact in the public user file we would not have any detail and it would be a file, any geographic detail that is, no state, county, or city identifiers or the exact dates, we don't have the exact dates as it is now.
So we have shared this with NAPHSIS and they've, they're making the following proposal although I must emphasize this is all in discussion. Some of their jurisdictions have requested as it says here further limitations, the authority to restrict certain variables at the state level from the national public user file as well as the compressed and aggregate files, and that we exclude the day of the week. It might not be completely clear what this means and I'm not sure that I understand all the implications of this but that it's interesting that they're saying here that even though we would not report detailed geography they're concerned that their state laws do not permit, this is for just some states and I don't have the number, it's a considerable number, for some states their state laws don't permit this data to be even there even in the aggregate.
Now as it says on the bottom of this, the utility and value of this national public user file and the compressed files are under evaluation. What I take this to mean is to really understand whether one would have to restrict this information even if it were to only appear in the aggregate.
Another point on this slide, which really again poses some concern and we need to discuss this, is their request, again it's just a proposal at this point, that there be retro application of the policy to all public use datasets, which would mean that we would have to go back in time, perhaps different time for different states but go back in time and modify the public user datasets. Some of you look puzzled but we are in the process of discussing this as the slide says. Their statistics committee, the NAPHSIS Statistics Committee, is asking for all the individual jurisdictions for copies of the laws, etc., so that they can actually look at these detail and understand the implications of these for this national dataset. And we and NAPHSIS will review all of these documents to determine the limitations and to develop something that's mutually acceptable, a mutually acceptable data release policy.
Now let me just say that I view this data as the foundation for all the information that we have including for that matter the survey data, it's providing key information on the population of the United States, information that we get back from surveys is very often linked one way or another to mortality data and sometimes to birth for that matter, so it's really crucial. I view it as kind of the, literally the foundation for what we do in NCHS and since we're the core of the department's activities related to data it really is the core. So this is a very serious issue but one that I don't want to represent to you as one in which we've made decisions. But I think it's important that you know that this is under discussion and that before we do anything we will seek your guidance and the guidance of our Board of Scientific Counselors and most certainly the guidance of the Data Council if not other organizations, so it's quite crucial.
Let me bring you up to date on the Board of Scientific Counselors --
DR. COHN: Ed, do you want to stop there to just talk about this for a second? John Paul? I think we all have a number of questions here.
MR. HOUSTON: I just had one question, I know the states sound like they're concerned and asking questions, has there been any public concern voiced about this practice or is it simply through the states themselves?
DR. SONDIK: None that I know of, I don't believe we've had any. This came up, and I think it's two years ago now, as HIPAA rolled into high implementation gear and literally I was at the NAPHSIS annual meeting and the issue started to be raised, and it was that states became very concerned with the focus on confidentiality as to whether or not they were living up to the requirements of state organizations and living under the state rules.
The states voluntarily give us this information, there's no statute that says that they need to do this, we on a collaborative basis, cooperative basis, we put the information together, make it available, we collaboratively work on the National Death Index, which I think most of you know what that is, that enables researchers to be able to get more detailed information on cause of death. What the implications of this for the National Death Index, which is really crucial to many epidemiology studies, is something that remains to be seen, something that we'll have to consider. But there's been no breach, it really is a matter of concern, and so we need to look at it and we need to look at it I think with our lawyers quite literally by our sides and by our lawyers I mean from within the department but as well the state lawyers as well.
We certainly don't want, obviously I don't think any of us want the states to do something that violates their regulations and in the past, I mean this is really a surprise that we might be doing something that would do that. So they're concerned about what in effect they have agreed to in the past as opposed to a practice that they were not aware of, they've been very aware of the use that's made of the information and how the information is disseminated, clearly it's very well known, but it's sort of a, their increased awareness of their own regulations has put us in this situation.
DR. COHN: Ed, maybe you could help me understand this one because I certainly understand the concern, I'm actually trying to figure out where they are, where everybody is in the process now two years later after this has been sort of initially brought up, and I guess I wanted to understand actually this overhead where you're talking about they're just collecting copies of the laws, is that really where we are two years later in this conversation --
DR. SONDIK: Yes, well that's where we are, I mean in essence you could say it hasn't made much progress. There's been a lot of discussion but what we haven't seen is the data if you will, what in fact do the laws say, let's sit down and look at those and then understand the situation that we're in. And my suggestion is that as we do this we bring this back to you so that you all are fully informed and in fact you may want to designate, however you want to do it, a group to be more closely involved in this and completely aware of where we are at each stage in the process.
DR. COHN: So this has not gone through any legal review, this is more along the lines of, it seems like a structure that has been created where we don't exactly know what the problem is at this point. Am I mistaken on this one?
DR. SONDIK: No, I think we do know that there are state laws that are quite, it's quite obvious that they're at variance with the release of this information, some of them say, go so far, I should have brought an example with me but go so far as to say you can't share this information, except perhaps in the most aggregate way.
DR. COHN: Okay, well thank you for that. Don and then Harry.
DR. STEINWACHS: Just a sort of a question because I agree with you about the concern. CDC funds I guess a couple of centers and public health and the law and I know they have at times been called on to think through uniform statute recommendations and I was just wondering is this an area in which there are any recommendations for uniform state statutes related to data and whether or not it might also be a time to think about proactively helping states understand what's needed and what may be a reasonable tradeoff, certainly they can do whatever they want to but at least it might be something --
DR. SONDIK: I think that's an excellent suggestion and I will do that, I'll be sure that in fact that that office, which I believe is now a part of Health Marketing, Steve reminds me that's where it is in fact, and one of the benefits from the new CDC organization is in fact really a closer relationship and I think it's an excellent suggestion. I have not involved them so far but I think this is the time to do it.
MS. GREENBERG: We have done quite a bit of work on model vital registration laws and I'm not sure, and we've updated them I think over the years, but again it's up to the states, and I would assume that the model law sort of allows what we, our current practice, but again it's up to the states whether they implement those model laws or how they --
DR. ELO: But I think there's a lot more that can be done in this area, that's actually a point I want to talk a little bit about from the board's point of view as well.
DR. COHN: Okay, Don, Harry, Jeff, and even before I ask a question, I couldn't decide what the rest of the presentation, is this on this point or does it move into more of a general Board of Scientific --
DR. SONDIK: 90 degrees from this.
DR. COHN: Okay, good, in that case we're stopping at the right point. I just wanted to make sure that there wasn't anything here that represented the board position on this one. Okay, Harry.
MR. REYNOLDS: Ed, how does this data that the states are concerned about relate to the structure of de-identified information under HIPAA? Because there is a very clear definition in HIPAA and the entire environment has rallied around what is considered de-identified and so you mentioned this group being, somehow being involved, I mean that's the one thing I would love to see it mapped to because the same exact data is being sent around in lots of ways by other entities, not just what you're talking about. So there's kind of a structure out there right now of what everybody can do under this de-identified umbrella and how this data relates because those same states, I mean people doing business in this same states are moving that same data around in those states under that umbrella of de-identified, so I think that would be an interesting, that would be a very interesting answer to hear because if this blows up de-identified philosophically, because all of us know that, or think, that the HIPAA privacy is really not clear and until there becomes case law or people start making certain stands as to how it happens and those have not appeared yet.
And so this, this kind of thing and other things like this could be that philosophical case law that could start turning this thing in a dramatically different direction then the whole world has implemented on similar data in other arenas. So I think that would be a definite tie between what we've been doing here as a committee, because in a lot of cases it's the same data.
DR. SONDIK: I don't disagree with you at all and I really don't have an answer to it. I think in the laws that relate to the vital statistics within the states they don't view this as data that has to do with electronic commerce related to health, let me put it that way. In fact this has been one point that has troubled me for the last, I don't know, the last 30 years, is that in fact --
DR. STEINWACHS: I didn't think you were that old to have been troubled by it for 30 years.
DR. SONDIK: Thank you, over the last two years I've been aging very rapidly, but I appreciate the thought.
What amazes me is that the vital statistics, and maybe we should put this on the back burner here and then come back to it, but the vital statistics for many states are administrative data, they've got nothing to do with health, absolutely nothing to do with health. And in fact this enterprise is maintained by selling the birth certificates or the death certificates, we give a very small amount of support relatively to speaking to what it actually costs to maintain a vital statistics system. And in law in effect the purpose of these is this fundamental system on understanding the population and these events that happen in the population but its implications for health is another story and this is what fascinates me because those of us in this business and I'd say epidemiologist in general view this as the foundation of our information on health.
I mean look at the most fundamental measures of populations, of population health, they have to do with infant mortality, they have to do with how long people live from birth or from age 65 on or whatever it might be, what they die of, it's crucial. And yet I'd say in almost every case, every state essentially, it's administrative data, in some states the view toward it is clearly that this is health information but in others based on the funding, I don't want to say what's in anybody's mind but if you look at the way the system works within those states it's very much an administrative process. So that's, your point is really an interesting one because HIPAA information is health related --
MR. REYNOLDS: Also states have Medicaid programs which have exactly the same, they're in the state and they have some similar data.
DR. SONDIK: We have to crank that in.
DR. COHN: Okay, Jeff?
DR. STEINDEL: I just want to add something to Ed's comments, I've been involved with a couple of discussions on this in my multiple travel roles and from what understand the way this is being positioned, this is somewhat related to what Harry was asking, is the tension exists between completely identified data and the HIPAA requirements for de-identification, and where the tension comes is the information is needed of this vital health statistics data falls somewhere between the two of them. And getting to that level is where the tension is coming with NAPHSIS, etc., so I don't think it has any impact on the HIPAA de-identification rules.
MR. BLAIR: The way you described this issue is that there's variation in interpretation of privacy laws, state privacy laws, and that that has become a problem. There may be an opportunity to address all or part of this coming up very shortly within the next four to five months. They refer to it as HISPC, Health Information Security and Privacy Collaborative, that was the fourth major initiative, and the prime contract for that RFP was issued by AHRQ to RTI, Research Triangle International, back a few months ago, and the point of it, the point of it is to identify and address impediments, privacy and security impediments to health information exchange at the organizational level. And the scenarios that would be used that will be distributed to each of the states to go through during this next year under that RFP are supposed to be distributed to each of the subcontractors in June. So there may be an opportunity here if you are able to confer to AHRQ or RTI in terms of those scenarios to see if one of those scenarios could reflect the situation that you're running into. I know that one of the emphasis that they're giving to the subcontractors is that the governor has to designate the entity, that would be the subcontractor, in most cases that's the department of health, but the other pieces that are being emphasized is that sharing health data within different state health departments is one of the other issues in terms of variations of privacy law and security laws. So anyway I'm offering that because maybe that is an opportunity to begin to identify the variations in up to 40 states and start to get them addressed.
DR. SONDIK: That's a very good suggestion, that plus coupling in the public health law program at CDC, the lawyers at CDC certainly are aware of this and will be involved as we move forward with it, but I think those are really excellent suggestions.
DR. COHN: Irma, do you have any comments about this one?
DR. ELO: There was something that I was going to address from the point of view of the board but if you want me to do it now I can do it, it relates to --
DR. COHN: It may be more appropriate this part of the conversation, yeah, I mean this particular piece, we'll let you talk about the other stuff in just a minute.
DR. ELO: Out of the review, you haven't gotten to the review yet, the role of the board in NCHS is we were thinking what would be the best way we could contribute to both NCHS but also sort of serve the public interest and the interests of the research community so one of the things we undertook was a review of the various programs. So when we did the mortality review of vital statistics this was one of the keys used that came up. In fact there are a number of related issues here, one is how do we deal with different state laws and from this review process it appeared that there were some states that feel that they violate the law but we also feel like there is a possibility of negotiating with the states. And that that process of negotiating should include people who are also users of those data.
I mean I think one of the, at least some of the conversations I've had with the state registers is that they, their experience with the research community who actually may be utilizing these data for analytic purposes is very limited and I don't necessarily see that they see the value because they view these as administrative record data, they don't really see the broader picture in which these would be used. So I think this, and in fact one of the major recommendations out of our review was that there should be a follow-up committee that would specifically deal with the state issues. Because of the confidentiality reasons it also gets into these Intelligence Reform Act which is going to be impacting on vital statistics record systems around the states, and it gets also into the issues of I think, was reporting, preparedness reporting and reporting of death during disasters and after disasters, and this relates to one of the other topics that we were discussing yesterday which has to do with electronic health reporting and there was one of the issues that came up in the review and was emphasized in some of the private conversations we had was electronic death reporting which seems to have sort of had some momentum at one point but seems to have lost it at least from the point of view of some of the state people.
So that's another important thing that overlaps with a lot of what David was talking about yesterday. So I think there are a lot of these issues that have to do with state law, stated information technology, IT, health information technology, how do we get around states law and I think Donald's suggestions of including some of these people. But I would hope that this committee and I think the BSC would want to urge NCHS in these negotiations to include people outside the government, so that sort of the broader issues and users of these data and needs of these data get represented and that we can also express our point of view. So I guess in June or whenever we meet, May, we should hear some follow-back of what we talked about but there are a couple of other issues that I'll address later but they sort of fit in the bigger picture.
DR. SONDIK: We've talked in the past about a sort of joint meeting and this certainly would be an excellent topic I think for a joint meeting. Shall I go on?
DR. COHN: Sure, I think it's, the only thing I'd say on this particular issue probably the Privacy Subcommittee and of course as Mark Rothstein isn't here it's always easy to assign the point person who isn't here, but I mean this obviously is complex and I'm sure, I know it also involves populations, but it appears to me to have enough privacy pieces that would be served by having them sort of --
DR. STEINWACHS: I think Populations might be willing to defer to Privacy --
DR. COHN: To Privacy, okay --
DR. SONDIK: I face I think I heard him explicitly express an interest in this.
-- [Laughter.] --
DR. COHN: Okay, I was just trying to identify a subcommittee point on this piece.
DR. SONDIK: The other topic I wanted to discuss very briefly was an activity of our Board of Scientific Counselors, and I'll present this very briefly and then Irma and Bill may want to talk about it, but it has to do with program reviews and we've wanted to do this ever since we set up the board a couple years ago, it really started to get into high gear focusing on process and in fact a review took place of the mortality side of the board, of the ledger, vital statistics, just this past, over this past several months we had a seven member panel chaired by Randy Hasslick(?) and Randy is the medical examiner/coroner for, oh my God, Steve, what's the county that CDC is in? Fulton County --
DR. STEINDEL: The actual county CDC is in is Decal(?) --
DR. SONDIK: There you are but he's Fulton County, thank you very much, I get points off for not knowing that. But I know where the airport is --
But what I was very happy to know in fact was how well this process worked, it really was terrific. The report has been presented to us, I wouldn't consider it absolutely final because we're in fact responding to it but I think as soon as it is then obviously you should have a copy of it and in fact I would welcome the opportunity to come back and discuss it, and if you'd like to see a draft copy that would be fine as well as long as it's understood in fact that it is of course draft.
The process is I would consider a kind of a modification, a reasonable facsimile thereof of the kind of process used for an NIH intramural laboratory, notwithstanding the fact that the laboratories have lots and lots of individual research going on, this really looks more at the processes that are going on and considers this more of a uniform or single activity. But I think the panel did a terrific job and in fact it included someone from outside this country for that matter and a variety of disciplines.
So the process here is for the panel in fact to report to the BSC, so in fact we in essence didn't get it directly, we're getting it through the Board of Scientific Counselors which is exactly the process that at least we used to use and I assume is still used at NIH. And then the BSC prepares recommendations that come to us, and simultaneously we're reviewing a copy of the report.
The report, I'm not sure I emphasized the positives in this but was very happy about and very pleased with the quality of the work that takes place and the quality of the data but at the same time it felt that increased emphasis on the quality on the input side and just in the processing of the data would be useful. I feel very strongly about the process on the most, personally I'm saying, on the most fundamental side here which is the fixing of the cause of death and the writing of that material and then how it's transmitted, it's really crucial, there's so much, it's used in so many different ways and it really is important that we understand even more then we do the quality of the cause of death data.
The committee felt that there was room for improvement in the access and the dissemination, access to the data and its dissemination. It also felt that, this is probably true for every effort that we have and I've seen this recommendation elsewhere as well, that it's really important to have an analytic or a research plan that the activity is imbedded within. Allied with that, I would love to see NCHS have not only more of a, a greater research program inside, and I think we do well with the resources that we have, but I'd love to see us have an extramural research program in which we would sponsor research focused on the methods by which we collect the data, the quality of the data, and probably a little bit on the use of the data, well, certainly the use is far and wide and there's a great deal of work using the data but I think focusing on the methods would be very, very important and I think that's a role of an extramural research program in a statistical agency frankly.
It also points, a recommendation had to do with strengthening the efforts with other agencies, the states, and academic institutions and so forth. We have quite a large number of collaborative efforts but there could be more and those efforts really ought to be in the context of the bullet above which is the analytic or the research plan.
There were more recommendations actually related to as Irma just pointed out focusing on this issue of confidentiality, which again I think is important, even though I'm here and even though this has been an issue now for the last couple of years, it's still at an early stage in the understanding of this.
They recommend appointing an ongoing working group to assist in the development of this plan and they felt that, and I couldn't agree more, we need to take a long term perspective on this as opposed to the perspective that's in a way driven in part by the annual budget process where we kind of view things in a sense in an annual basis but that we think of this more in terms of a five or ten year perspective, and we will be I'm sure doing that.
The question, now we intend to review every one of our programs, we felt that it was most logical to go ahead and look at the other side of the vital statistics program and look at the reproductive statistics activity. It says branch here, I view it not so much as the branch but more of the reproductive statistics activity, and we intend to use at least at this point the same process of identifying a panel which consists of people entirely outside of the NCHS at least. There were no members on the panel by the way from CDC or the federal government, there might be circumstances when in fact we would want that, for example perhaps in relationship to activities in the child health institute at NIH, or in activities at CDC. But I'm kind of leery of that, I would really, I think we'd like the people as distant from any direct connection with the activity as possible, really focusing people who need the information, use the information, and the quality of this.
We had a fair amount of debate as to when to ask this panel to report, some felt that September was perhaps a little early but we felt that we really have momentum, that the board has momentum here, and for that matter the vital statistics program has momentum, and we felt that this was a good time to capture that moment and move ahead with the reproductive statistics branch.
I have to, and want to rather then have to, say what a terrific job the mortality statistics branch did in putting information together. I was very proud of the effort that went into it and it really will be a model for the activities and the preparation of this kind of information in the future. It's really interesting, at NIH I was connected with to some degree the review of the intramural side of the ledger and the preparation of this material was a major activity and was invaluable to the program. And I see that material here in the same way, I think it really will be invaluable to the management of the program in the center in the future.
So that's where we are on these two issues.
DR. COHN: Thank you, and I think very useful. Now Irma and Bill, do you want to talk a little bit about the Board of Scientific Counselors?
DR. ELO: I'll try to take five minutes, I know you guys are all hungry and getting tired and wanting to go, so what I'd like to do is pick up on some of the things that Ed said and sort of highlight maybe where there are overlaps and interest and linkages with the work of this committee. But let me preface my comments on this report by saying that, and highlighting, what a good job the mortality division did in preparing the material for this report and in fact the report itself was very complimentary of the activities of the mortality division, in fact I think what they felt that they had done a terrific job in the past and what the report really was doing was looking to the future. Because there are a number of issues that are coming up and very quickly so what worked in the past ten years is unlikely to be what should be continued in the future. So I want to just preface by the fact that there was a very complimentary views of the mortality division.
But there were some themes that emerged from the review that I think that will be important for the future, some of which we've already discussed, but let me highlight a few. In essence there were three themes that came out of the recommendations, where were issues that were internal to NCHS, which was how to prepare the reports, I think Ed alluded to some of the processes here of how we ensure the data quality and the input side of vital statistics and here in particular we raised the issue of the reporting of race ethnicity which is also part of your recent report of the Populations division. And that's a major issue, that's a major concern, and beyond just being concerned about it it's not clear to me what steps are going to be the best to take and I think this committee and others should really seriously think about how we improve data on race ethnicity in vital statistics but maybe other data sources as well, so that was one example that I think overlaps with issues that this committee has dealt with.
The other issues, there were some other internal NCHS issues but those are not so important now. But there were these issues that cut across institutions and here I think the most important things probably to confidentiality and data linkage across data sources, and data linkage is something is that the Populations Committee has also been interested in. We sort of came into this issue by the fact that NCHS already links many of its data sources to the National Death Index, some of the data linked to the CMS records, so there's quite a bit of expertise and experience on that linkage, but there may be more issues that could be discussed and I think that's another area where this committee and what the BSC is concerned with, issues overlap.
And the other thing was this electronic death registration and how that fits with health information technology initiatives that are undertaken in the department and it would be a shame if the electronic vital statistics reporting didn't get incorporated into that effort. States seem, if we want rapid response on births and deaths and catastrophe electronic reporting would really be what you would want to have and it's not clear to me where that fits or to the board where that sits within this effort.
Then we already talked about the issues that have to do with coordinating with states, understanding state laws and ensuring that there will be continued reporting of vital statistics for statistical and research purposes, but we discussed that already.
The one issue that sort of came up in Ed's presentation as well is concern about data access, it's becoming increasingly difficult to access even the National Health Interview Survey that's linked to the National Death Index because of the interpretation of the confidentiality laws within HHS. There's this concern about being able to identify individuals if you know certain information about them including their death or cause of death, and for certain causes that are very rare there's some questions about that. So we have a little group within the BCS that's been talking with Jennifer Maddens in particular but others of how we might find ways in which these data could be released more broadly and it's not so much the vital statistics data that Ed talked about but it's survey data that's linked to other data sources, and that's why I raised the issue when Gene was talking about where improvement data issues and this is a big concern. But I think NCHS really trying to make an effort to accommodate this and I'm hoping we talk more about this in the May meeting.
So the joint hearings or the joint efforts on the data linkage issues, I think it's another area where the collaboration could be very fruitful and beneficial and I think there's quite a bit of expertise in NCHS to do this. And it's not that, when I was talking about this before I think we should encourage these efforts but simultaneously we need to be concerned about access issues and the usefulness and the money and the effort that goes into this is really the benefit side of it we need to think about, the cost and the benefit side I think are going to be important.
So those are some of the areas where I think there is certainly a lot of overlap. And let me just end by saying that when they asked me to be this liaison I was like okay, another meeting, I guess so, but I've actually learned a lot and I'm very happy that you have invited us to be part of this because I think it actually will be a very beneficial collaboration.
DR. COHN: Well, Irma, we're very pleased to have you here and I've actually as I've commented try to introduce you three or four times and you're constantly out of the room, but actually I did do it yesterday and we're actually very pleased to have you.
Bill, do you have any additional comments?
DR. SCANLON: Well me just be even a little briefer, and I would share sort of Irma's reaction too, another meeting, and being local I can have absolutely no excuses --
-- [Laughter.] --
DR. SCANLON: But it also, I mean I find the meetings to be incredibly interesting and beneficial and in fact in part it goes back to when I was on this committee before, the subjects that the board is interested in was a part of what the national committee was interested in at that time. And I think it's not an issue that we became uninterested in them, it's a question of that the set of tasks that the national committee has to deal with has grown and there's just an issue of kind of how can you accommodate sort of all of these things within the timeframes that we have available to us.
And I though that this meeting perhaps more then any of the others then I've been at since coming back on to the committee has illustrated the interactions and the commonalities between sort of what the board is doing and what NCHS is doing and what we're doing. And it's becoming even more important as we get further into this issue of health IT because what's the potential of IT in terms of influencing sort of how we do get basic information about the health care and the health of the American people and we are obviously having these kinds of discussions and I think sort of drawing upon the board and having Irma here sort of with us hopefully on a regular basis will be helpful in terms of bringing back some of that information to NCHS.
I also think that we shouldn't forget that our, that the board is reporting to NCHS and its ability to advise NCHS and our role in advising the Secretary is something that needs to be taken into account. This discussion about state laws and what they might mean in terms of vital statistics, we not only have a model of uniform sort of recommendations for state laws, etc., we've got the federal model of uniform inducements, if you want X please do Y, and I think there are things that rise to the level of importance that you want to do that and you want to recommend to the Secretary that the Secretary think about this from that perspective. So certainly continuing this discussion about vital statistics and as well as sort of others is something that we should go forward in the future.
Let me also, the last comment, sort of tell you about how impressive the panel that reviewed the mortality data was and actually it's sort of frightening in terms of setting a precedent for how we should think about our work. They were formed in August, met for the first time I think in November, and issued a full report in January --
DR. STEINWACHS: They could make us look bad.
DR. SCANLON: -- a full and extensive report, so very impressive.
DR. COHN: I appreciate your comments. I do want to sort of comment, I think we've all appreciated this and I think this meeting has been probably a little more then others where to move in the future successfully it isn't just the electronic health record, it's touching the patient through the personal health and the customer through the personal health record. It's also assuring that we have improved population health and better public health as a result of all of this and this is really I think the vision and the, it's sort of is what the national committee is, it's why we have an NCVHS.
So I want to thank you both, Irma, a pleasure, I look forward to having you at many more meetings, and Bill, thank you for the update.
Now we're at 12:30, I know that Don needs to leave, and we're going to finish probably at 1:00 or very shortly after that. Do we want to take about a ten minute break at this point? Take a ten minute break and grab something, and then we'll do a final session, start in about ten minutes. Thank you all.
[Brief break.]
Agenda Item: Reports from Subcommittees and Workgroups - Subcommittee on Privacy and Confidentiality
DR. COHN: -- be interested to be able to start sitting in on the conference calls that you can, this is as we know a difficult area and we're really we're likely not to get through it unless people come in well prepared and have participated in at least one of the discussions beforehand. John Paul, do you have anything on that one?
MR. HOUSTON: I would just like to add that I think one of the things that we found through all these meetings was that there are really good faith differences of opinion with regards to privacy and the NHIN and we're trying to get as much consensus and common ground as possible recognizing that people in good faith will disagree and so again I think we're trying to do the best that we can and come up with a system that's rational and tries to best address privacy considerations recognizing that there will be some disagreement.
DR. COHN: And evolution of thinking as things go on.
MR. HOUSTON: Exactly.
DR. COHN: Okay, Subcommittee on Populations? Kevin, did you want to talk a little bit about that?
Agenda Item: Reports from Subcommittees and Workgroups - Subcommittee on Populations
DR. VIGILANTE: Yeah, we met this morning and just really a couple of items to note, that the report on the collection of race and ethnicity data is due to be published in the last week of March, first week of April was my recollection, about 2500 copies and the dissemination list is being composed.
We also talked about holding hearings on the notion of data linkages, identifying datasets that are of interest but perhaps there might be some synergies and cost efficiencies by linking these together in some way and sort of moving forward and actually finding a date for hearings on that to explore that further. And then much in the theme of what Jim was talking about today with regard to preparedness to really start thinking about what sorts of data elements, information, that should be available perhaps during and after an event that would help guide the event and the response, the situational awareness, to think about what sort of, perhaps even data standards might be relevant. So that's I think an area where we also have traction in, we'll probably be moving forward on and we'll talk to Marjorie about scheduling.
And I think that's about it.
DR. COHN: And actually even though that Don isn't here I actually want to express my appreciation to the entire Populations Subcommittee, obviously I think you've finished a major report last year and I think you've taken your time to figure out what the next direction is and it sounds very solid.
DR. VIGILANTE: And it feels good that we've found I think a direction to go in, so thanks to everybody.
DR. COHN: Okay, Workgroup on Quality, Bob Hungate.
Agenda Item: Reports from Subcommittees and Workgroups - Workgroup on Quality
MR. HUNGATE: Workgroup on Quality is less specific in its intentions at this stage although I think part of that is the sheer complexity of what we're grappling with. We appreciate the time of other committee members who joined our discussions yesterday. I want to also go back to an earlier report that we put together that ended up with candidate recommendations of which one of those was the use of secondary diagnoses on admission and the coding of that. And I'm pleased to report that that's gone forward, Donna Pickett is here and has been participating actively in that, I've been in a couple of phone calls in that, and it's nearing the time of going to the NUBC, NUCC committees for final action. It's illustrative of how long it takes to get seemingly little things done but I just thought that I ought to report that that has gone forward, it's still on track and you think about it's very important in terms of an underpinning for the P for P activity because secondary diagnoses on admission are an important variable in the resource demand of a particular patient. It's timely in its arrival but maybe even a little late, but it's moving.
The meeting yesterday really ended up with two major foci for the group, understanding what it would take to measure, assess, and improve quality at a population health level, and understanding what it would mean to have a person centric approach and how that links to population health. That is not a simple subject, the combination of those two is a very large topic and it does not yet really narrow down very much what our content will be. So we look forward really to participating in the retreat because I think that will further help move this forward. There will be a conference call between now and then on the part of the Quality Workgroup to take some next steps.
There were some specifics that came up in yesterday's meeting around the docket program which is going forward at CMS, it is a movement in the direction of the things we're talking about. We don't understand it well enough as a workgroup at this stage to say where we belong so there's a content there that is a need.
Stan made an excellent suggestion about doing a study of the difference between places where there is excellence in the record keeping around management of diabetic patients and the rest of the country if you will as a way of trying to get at a demonstration of what is the benefit of records and their use in a public health way. And I think this is something that we didn't get time to talk about it yesterday but it's a suggestion deserving of more discussion and will get it in some way.
The last is first a thanks to Susan Canaan for her very helpful assistance in preparing documentation and you have a replacement for the document that some of you got yesterday which is a corrected form, so I just ask that you get rid of the one and replace it with the other.
Second is to thank Debbie Jackson for filling in in the lead staff activities that we have been missing and Marjorie, I appreciate your help in that regard as well.
But that's all part of a plea in a sense for the filling of the lead staff responsibility for the Quality Workgroup. This has seriously hampered our ability to make progress on what we consider to be important issues and it shows up in two ways, it shows up in the content, it shows up in how well linked we are into the activities within HHS, both CMS and AHRQ especially, so though I constantly feel that we have more learning that we need to do which would be much easier to accomplished if we were better linked into those activities.
Now I can't tell where the chicken and the egg on this are, I've been on this committee long enough and have been yet unable to attract any interest on the right place, so I take a little personal responsibility in the sense of feeling that somehow we haven't made the agenda sufficiently interesting in a broad sense to encourage participation. At least that's my personal sense, now it may be that it's more complex then that and I want to plea for rapid attention to that because it's badly needed and has to go forward.
Justine, would you have anything to add to that brief summary? Okay, thank you.
Agenda Item: Future Agendas for NCVHS Meetings - Dr. Cohn
DR. COHN: Bob, thank you. Well let me just talk about for a minute the upcoming June meeting, I think we've done all of the subcommittees and workgroups. I think based on all of your input yesterday we obviously have our next full meeting is June 21st and 22nd and I think there's been popular agreement that we will put a strategic planning retreat for the full committee which will start sometime the early afternoon of the 22nd, probably finishing around noon to early afternoon of the 23rd. Marjorie and I will be working on location and other pieces, I've actually drafted Carol McCall to help think through, at least to provide some straw man or whatever, straw people, for the Executive Subcommittee about how we might approach this. But I think as a commented to a number of people we've all done these things before, I mean I can't tell you how many we've all been to over the years but the success of these things relates to planning very carefully, I think we're very clear that we'll probably need to find a good facilitator to help us but it won't be just a facilitator, it'll be small groups, large discussions, and some sort of a combination of things so it'll be all of us working too and sort of just beginning to try to get a view of priorities for the next year, next two years, beginning to look out for a vision.
I think we need to stay away from probably the ten year vision, as nice as they are, I think it's really the tradition of the committee that we try to keep our focus on really what it is that we are doing in a substantive fashion. Certainly I'm reminded as Harry has commented about that for our next year we will need to come up with a balanced portfolio of things that address long term needs as well as more near term needs, but in all of it, I think we have a history of providing, gosh, we were talking earlier yesterday, decision ready documents where we are actually getting specific enough, even if we can't say do X we say you need to study this and that, it will allow you to make a decision even if you can't, you don't feel that it's ready for a decision yet, so the things where people really know what they should be doing in a very concrete sort of fashion. But of course both those topics will be things we'll be talking about in June as we look into the next year.
I also view it as an opportunity for self criticism though obviously by the appropriate time and venue for that, self reflection, that's better, I'll change that to self reflection.
Now the actual structuring of the meeting before we do the strategic planning is going to take a little bit of art because I think the intent would be that we will pepper some presentation that provide some sort of visioning of the future in those sessions. As I said we're not intending to have any actual formalized presentations during the retreat, so we'll be sort of front loading some of the meeting with that.
Now I've also, assuming that nobody has any objection, was planning on actually inviting a couple of our previous chairs of the committee to the strategic planning retreat if they're available just because they sort of have interesting perspectives on things, Marjorie and I just spend too much time, she sort of saying I thought of that too, yesterday I sort of said about the Executive Subcommittee meeting afterwards, but so we'll be enlarging the group slightly in terms of that conversation.
Now obviously in terms of action items for June, the Privacy report is going to be coming forward and we're going to really need to provide enough time for us to talk through that but not so much time that it becomes a subcommittee meeting. But obviously the intent would be to structure things so that we can hopefully approve it at that meeting, John Paul, how much time do you think it will need?
MR. HOUSTON: I think it's a number of hours, I think it's a couple hours at least worth of discussion, at least, I think anything less and we're not going to get through it.
DR. COHN: I think we need to figure out how we're going to structure that, we may be able to have some, that may happen but unless we've done pre-work beforehand even a couple hours isn't going to do it. We may need to arrange some conference calls for the vendors before that to go through the version, because if we start, you don't deal with a 12, 14, 16 page document with 40 recommendations and attempt to gain consensus in two or three hours --
MR. HOUSTON: Is it reasonable to require that everybody reads it beforehand? I mean I hate to say it that way but I mean, I think a lot of times, a lot of times I think these things aren't read until they're discussed that puts us at a disadvantage.
DR. COHN: I think the bigger issue is what happens if people read it and disagree with it.
MR. HOUSTON: Right.
DR. COHN: So that's why I think we need to have some, we're expecting people to read it, it's not an 80 page document, it's a 14 to 16 page document --
MR. HOUSTON: I think Mark, I know I'd be open for having a group of conference calls which would allow us to vet out the issues. And again, I think part of the issues you indicated, a lot of this, there's a lot of maturing of thought over the time that we've been working through this and we should give everybody the benefit of that maturing, I think a lot of people are going to come in cold and have a lot of the initial reactions that we did and as we sort of went through it recognized, sort of were able to work through it and come to some reasonable conclusions and recommendations.
DR. CARR: Perhaps even beyond setting the expectation that everybody has read it advance, that as part of the conference call or as a separate email folks indicate which of the ones there's consensus about, I mean there may be that a number of them --
MR. HOUSTON: Or lack of consensus.
DR. CARR: Well, I'm saying let's get the ones off the table that folks agree on and then narrow down the focus of discussion to the ones where there are issues.
MR. HOUSTON: I think we could do that, we could sort of develop a spreadsheet whereby we had the different recommendations and sort of check them off until we get to the point where --
DR. CARR: And I think even as people indicate where they do have a question there probably are some clusters of similar ideas just as what you've gone through so you could anticipate and have the background information either circulated or available at the meeting so we can move it along and benefit by your experience.
MR. HUNGATE: It strikes me from the discussions that I've heard so far and the time its taken the Privacy Subcommittee to try to reach agreement that there are some areas upon which agreement will not be reached, and that that will be probably reflective of the body politic at large, so that the recommendation that would come to deal with those areas would be a different sort of a recommendation. And I don't know how that's been addressed by the Privacy Subcommittee.
MR. HOUSTON: It's interesting, we were speaking two days ago about an issue which we didn't think we had agreement on but it turned out I think we really did in large measure, it was a matter of variations in degree of a point or two, so we really gnashed through a lot of the disagreements and hopefully we can present them in a way that allows you to understand the different perspectives and why we arrived at what we arrived at. And maybe those conference calls will help sort of bridge that gap. Because again, I think once we got through certain things and at the end we had recognized that had all, we were able to work through sort of weighty issues and come up with something I think is workable.
DR. COHN: There's a combination of issues always with the draft documents, some of it is variations in understanding, some of it is that the wording means certain things to certain people and other things to others, then this is an issue of as we refine the writing hopefully it will express its meaning in a clear fashion so that we all, at least understand exactly what it is we either agree or disagree, but that's part of any production of any document.
MR. HUNGATE: I look forward to the phone conversation.
DR. COHN: Oh yes, it'll be interesting. So we will work on that, we also I believe will probably have an action item coming from Standards and Security, I mean we'll have at least a conversation about whether this takes the part, almost the first part of the annual HIPAA report or it's just more of a comprehensive letter related to ROI --
MR. REYNOLDS: And we'll decide that this afternoon and tomorrow.
DR. COHN: Exactly. And then I guess based whether Populations has any hearings, Quality, NHII, there may be some other items for us to work on towards action items.
MR. SCANLON: Just a question, in terms of just planning, if we wait to the June meeting to start the HIPAA report, the annual report, we might lose a lot of time. Should we ask the staff to start preliminary findings for what will be a traditional HIPAA annual report or should we, that could become something more, or it is the anniversary, or should we think of, committee's pleasure, I just worry that if we wait until June --
MR. BLAIR: Jim, are you able to wait until after the Subcommittee on Standards and Security discusses a little bit about how we might reflect lessons learned --
MR. SCANLON: Sure, sure.
MR. BLAIR: It'd probably even be late this afternoon or --
MR. SCANLON: No, that's not a problem. There are certain factual information updates that we would be gathering anyway but I think the committee is looking for a more thematic, ten years after enactment, sort of where are we.
MR. REYNOLDS: If I had to comment right now I'm not sure that the letter fits in the report to Congress but Jeff and I met on it today and I read back through last years, so we need to work that out over the next day and a half and then decide. But Jim, I agree, we need to work with you to make sure we get some of those facts that are in there updated, especially, I mean we've been getting regular updates from OCR, we've been getting regular updates from CMS, I think those are key items that we can go ahead and start putting together.
DR. COHN: Now obviously there may very well be other action items and we'll sort of figure that out. I don't have a whole bunch of other necessarily speakers that we've identified but I'm sure that Marjorie probably does. Is there something else you wanted --
MS. GREENBERG: Item nine I think, put the agenda for the Executive Subcommittee conference call that we had the end of January, lists a number of items, there one through 11 of future meeting agenda topics, some may have come up also the last few days, but some of these are being addressed by subcommittees but I think we can defer that to the Executive Subcommittee conference call as to which if any of these we want to include in the June agenda.
DR. COHN: Yeah, that sounds good. We've got just a couple minutes before we end but as you know every meeting I sort of like to take a moment and sort of say geez, what worked well here at this meeting, what do we need to improve on, suggestions or thoughts, actually one of the things I'm interested in is what you all thought of us not having overlapping workgroup and subcommittee meetings, whether that was a good or a bad thing, or what people thought of that, but just generally. Paul?
DR. TANG: I thought the non-overlapping worked out very well and I particularly appreciated the Quality Workgroup having such a thoughtful summary to one, inform us of what's been going on, and the discussion was I thought invaluable in terms of how it interacts with the NCVHS workgroups in part of setting the agenda for our future work activities.
DR. VIGILANTE: I agree, I thought this was a very productive meeting in terms of sharing of ideas and getting some cross fertilization of thought, and so the non-overlapping meetings, now whether we should always be that way in terms of efficiency, whether we alternate, because sometimes smaller group environments do work better but I think periodic meetings like this are actually very helpful.
DR. CARR: I would echo what Paul and Kevin have said and I think also the flow of the formal presentations and their relationship with the discussions was extremely helpful because I find, you hear a presentation but if you don't have a chance to sort of process it or integrate it or understand what it means to the whole committee or the subgroups it's lost, and so I thought that worked very well. And Quality Workgroup really appreciated having the opportunity to touch upon all of the interfaces of the various subcommittees because I think we've struggled with that and we're ahead of where we were, we still have more to kind of work through but it was tremendously valuable.
DR. COHN: All right, any other comments? Suggestions? Well knowing that the next subcommittee meeting starts in three minutes I think we will give everybody a three minute break and breather. I want to adjourn this meeting, I want to thank you for all your participation and work with you. Thank you.
[Whereupon at 1:15 p.m. the meeting was adjourned.]