[This Transcript is Unedited]
National Center for Health Statistics
3311 Toledo Road
Hyattsville, MD 20782
Agenda Item: Call to Order, Review Agenda
MR. REYNOLDS: Good morning. I would like to welcome you to the second day of the meeting of the National Committee on Vital and Health Statistics. The national committee is a main public advisory committee to HHS on national health information policy. I am Harry Reynolds, chair of the committee and I work at Blue Cross/Blue Shield of North Carolina. I want to welcome committee members, HHS staff, and others here in person. Also, I welcome those listening on the Internet. I would like 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 please so publicly indicate during your introduction. I have no conflicts. Marjorie.
MS. GREENBERG: Good morning. I am Marjorie Greenberg, National Center for Health Statistics, CDC, and executive secretary to the committee.
DR. CARR: I am Justine Carr, Caritas Christi Health Care. I am a member of the committee. No conflicts.
DR. FITZMAURICE: Michael Fitzmaurice, Agency for Healthcare Research and Quality and Office of the National Coordinator.
DR. SCANLON: Bill Scanlon, Health Policy R&D, member of the committee, no conflicts.
DR. MIDDLETON: Blackford Middleton, Partners HealthCare, member of the committee, no conflicts.
DR. HORNBROOK: Mark Hornbrook, Kaiser Permanente, member of the committee, no conflicts.
MS. MILAM: Sallie Milam, West Virginia Health Information Network and West Virginia Healthcare Authority, member of the committee, no conflicts.
DR. GREEN: Larry Green, the only guy on this side of the room.
MR. REYNOLDS: Larry, I actually thought your questions were better than that yesterday but obviously the people around you just didn't quite hear them like we did.
DR. GREEN: University of Colorado, member of the community, no conflicts and no friends.
MR. HOUSTON: I am John Houston. I think I'm John Houston from University of Pittsburgh Medical Center. I am a member of the committee and I have no conflicts.
MR. BLAIR: Jeff Blair, Lovelace Clinic Foundation. We do have an NHIN contract but I don't believe I have any conflicts.
DR. WARREN: Judy Warren, University of Kansas School of Nursing, member of the committee, no conflicts.
DR. SUAREZ: I am Walter Suarez with the Institute for HIPAA/HIT Education and Research and member of the committee and no conflicts.
(Introductions)
MR. REYNOLDS: I thought yesterday was a very good day and especially from a standpoint that I think we need to keep this in mind as we do our other full committee meetings. We got a good chance to talk to each other about what's going on and I thought the questioning in general and people building off of that questioning was very helpful. I would be anxious to hear from the subcommittees and their breakouts later, but what we plan today is Judy is going to go through first the updated letter so that we can pass that letter on the NCPDP. But before you do that, Judy, I would like to recognize Marjorie for an item really quick.
MS. GREENBERG: Since we have you all here together we thought it would be a nice opportunity to recognize some staff who were mentioned yesterday by Harry and I wanted you all to know the staff who helped make the meaningful use hearing happen. I wanted you to know they haven't gone unrecognized by the management here. We have something at NCVHS called on the spot awards. We have initiated and like anything else in the bureaucracy they take a little while to actually happen but since they don't require anyone else's really approval other than the initiator, we can say with confidence that our being given so we have initiated on the spot awards for Marietta Squire and Cynthia –
Often what happens is the money just -– this is actually some money involved here. It goes into their paychecks and then they say where did this come from so I'm giving them a heads up and I thought it would be nice to do in front of all of you.
Now the problem is that on the spot awards are only for full-time employees and Jeannine is like we consider her a member of the staff but she is actually a contractor so I think Katherine Jones who is the leader of the NCVHC team which provides all of the logistical support for your meetings has a little something to recognize Jeannine as well. Thank you for letting me do that.
MR. REYNOLDS: It was well deserved no matter how many times we say it. It was quite an event to be swept up in. It felt like we got to be part of their magical event and all we had to do is sit here and act like we knew what we were talking about. Thank you to all of you again and again. So with that, Judy. Everybody you have the letter in front of you.
Agenda Item: NCPDP 10.6 Recommendation Letter
DR. WARREN: You have a printed letter in front of you so we didn't throw anything up on the screen. If people need I would be willing to do it because Marietta knows where it is at and pull it up. Does anybody need it to be projected?
What we did yesterday is we spent a little bit of time and I want people to notice we were able to take off at least a half a page. The letter is shorter than what it was before. We have changed the tag line now reads recommendation to adopt NCPDP SCRIPT Standard Version 10.6 for use in Medicare Part D e-prescribing. We reformatted the initial paragraph to make it a little bit easier for someone who is scanning through the letter to really find out what the letter is about and so there is really no difference in the wording of the letter other than we bulleted it out to the three things. So we had this last sentence is this letter will specifically address three topics: one, the current exemption for long-term care facilities from use of the adopted e-prescribed standards; two, the progress that has been made in modifying the standards to make them workable in long-term care; and three, our recommendation to adopt NCPDP SCRIPT 10.6 for e-prescribing transactions.
Anybody have any comments? The last one is modified a little bit. If we took off for long-term care because really it would be e-prescribing transactions for everyone not – care.
MR. HOUSTON: I guess the primary focus is not long-term care because a lot of what the letter is about, right? I will make another point if you say yes that is the case.
DR. WARREN: The reason we had to go with 10.6 was to make the standard usable for long-term care. It was usable before for ambulatory care so what has been added to 10.5 are the fields needed in order to communicate e-prescribing information for long-term care.
MR. HOUSTON: Wouldn't it be good for number three than to say that comma after the transaction were transaction and comma including on a voluntary basis for use by long-term care facilities?
DR. WARREN: That comes later in the letter.
MR. HOUSTON: I know but this is a recommendation and that is a core part of the –-
DR. WARREN: No, this says that these are just to be topics that are being addressed.
MR. HOUSTON: Do you say our recommendation?
DR. FITZMAURICE: Could I make a suggestion on how to handle that? We could have one of the current exemption, two of the progresses that have been made, and three our two recommendations and then bullet to adopt NCPDP SCRIPT and then another bullet to require long-term care facility is to use script when electronic prescribing.
MR. HOUSTON: But it's not requirement. I thought it was voluntary.
DR. WARREN: Anybody who does e-prescribing to be reimbursed by CMS must use the standard. Now it is voluntary to e-prescribing. It is not voluntary to use the standard. It's not said that way in the law but that's the way it works.
DR. FITZMAURICE: I would say it bluntly here and then I would put it as you have it in the back the way the law required to be, exemption lifted, but here you've got background, background, and then are two recommendations. You have summarized the letter right in that first paragraph.
MR. HOUSTON: I am just trying to think and if the intent in the opening paragraph is to try to verify or summarize the letter which it appears in some ways to be the case is adding something very short about transactions common including long-term care. Take it or leave it.
DR. WARREN: Let me work on that and we will try to come back to you about –- I'm just trying to figure out how to reword this so that people can do it now.
DR. HORNBROOK: Is the reader in this case the secretary on your staff going to have sufficient context so that they know exactly what you are talking about?
DR. WARREN: Yes because we have put a footnote in here with two previous letters that have all of the background in it.
DR. HORNBROOK: As you know in my world long-term care covers the gamut from assisted living, home health hospice, nursing homes, and assisted living and all those range of things.
DR. WARREN: We could also append the entire MMA law and all the regulations. Where do you stop?
DR. SCANLON: You did define long-term care facilities later in the third paragraph.
DR. WARREN: Yes. The challenge that we had is we needed an introductory paragraph. We had it before when it was all in a paragraph. Everyone seemed to be okay with that. As we worked with the letter it seemed to us to break it out into points that we had about the topics to be covered in the letter. The topic here is the recommendations. We didn't want to restate the recommendations at the beginning of the letter. We wanted to end with that and lead the reader through to why those recommendations were appropriate.
DR. SCANLON: To Mark's point though maybe in number two it should say long-term facilities because we use the word long-term facilities later on.
DR. WARREN: Okay.
DR. SCANLON: We're not talking about home care.
DR. WARREN: Okay.
MR. REYNOLDS: One other thing I would add is in these particular letters as it relates to e-prescribe we have had excellent guidance from Karen Trudel and Denise in the fact that their departments are going to be working on this. How can it be most helpful to them as one of our customers of this letter besides going to the secretary to use as they are helping within the government work on it? So some of the wording that you see in here that may at times not on this particular one but in other times may seem almost could appear laborious, could appear to be explaining maybe a little more than we need to. It then allows them to have that for use with others as they are moving this through the whole government process of getting this stuff accepted. We have had excellent input and help from them in what's the best way to allow this to be taken as this letter not necessarily ruled on by the secretary but moved into the government process to actually make a difference. She was very hands on yesterday along with Denise in helping us as we edited the letter. That's not defending the letter. That's having you see the process.
If we would look at a letter that was just kind of going normally we might not have had some of these other things in here that you are going to see in a few minutes. Thank you.
DR. WARREN: The next change that we made was to try to break up the background so that the reader can follow with the topics to come are. Let me read the two paragraphs that are in just the generic background and these are very similar to the two that were in there before with us trying to clarify about the requirements of using the standards. The first paragraph. The MMA established a voluntary prescription drug benefit program for Medicare Part D. Prescription Drug Plan sponsors and Medicare Advantage organizations offering Medicare Advantage-Prescription Drug Plans are required to establish electronic prescription drug programs to provide for electronic transmittal of certain information to the prescribing provider and dispensing pharmacy and pharmacist. The reason that was done that way in sequence was some advice that Denise and Karen gave us.
The next paragraph. The MMA does not require that prescribers or dispensers implement e-prescribing. However, prescribers and dispensers who choose to electronically transmit and receive prescription and certain other information for covered drugs prescribed for Medicare Part D eligible beneficiaries, directly or through an intermediary, must comply with any applicable final standards in effect for e-prescribing.
DR. SUAREZ: One quick comment. Direct or through an intermediary. Does it refer to the transmittal received information or does it relate to the prescribed drugs to Medicare Part D? In other words, --
DR. WARREN: Drugs are prescribed directly or through an intermediary especially in long-term care. It is through an intermediary.
DR. SUAREZ: Is the act of prescribing which can be done directly or through an intermediary. It's not the act of transmitting or receiving data. Transmitting or receiving data can be done directly or through an intermediary as well.
DR. WARREN: It is about the covered drugs prescribed for the beneficiaries and the drugs are prescribed either directly by the physician or through an intermediary. Is that clear for everybody?
Then what we wanted to do is really talk about the challenges that long-term care faced in adhering to the standard. In the first paragraph. The November 2005 regulation that adopted foundation standards for e-prescribing contained an exemption for long-term care facilities from the requirement to use the standards. Comments from the healthcare industry indicated that the proposed standards, while well accepted in the ambulatory setting, did not sufficiently support workflows and legal responsibilities in the long-term care setting. Therefore, long-term care facilities (defined under Medicare Part D as skilled nursing facilities) were exempted from the requirement to use the NCPDP SCCRIPT standard.
The next paragraph. Healthcare delivery in long-term care settings is unique for several reasons. Nurses are frequently the primary caregivers, with physicians (who are often not at the site of the long-term care facility) monitoring care. Specialized long-term care pharmacies are located off-site with drugs being delivered to the facility. In long-term care a prescription order typically remains an open order with no end date, or with an end date far in the future. A prescriber may need to modify this order and notify the pharmacy. Changes might include dose, form, strength, route, modifications of frequency, or a minor change related to the order. Also, in the long-term care environment, there is a need to send a fill request from a facility to a pharmacy. An example is when a medication supply for a resident is running low (two to three doses remaining), and a new supply is needed from the pharmacy. The facility needs a way to notify the pharmacy that a refill for the medication is needed. And here we put an asterisk and at the end of the letter it refers to our previous letters about the e-prescribing standards and if you note there we also have the URL. We talked about actually appending those letters as appendices and then decided the URL is probably a better way than adding more paper to the letter.
DR. SUAREZ: I would recommend deleting on the first line in that paragraph LTC in parens. It is never used and the only place it is actually used is in the other parens that says LTC, but throughout the paragraph you keep saying LTC.
DR. WARREN: And actually in reading this it is much easier to say long-term care than it is LTC. Anybody object to that?
DR. FITZMAURICE: LTC in both places, right?
DR. WARREN: We will just spell it out. We're not going to use any abbreviations. I will go through the letter and make sure all of those are gone.
A 2006 e-prescribing standards pilot, and that probably needs an apostrophe, identified modifications that were necessary to support e-prescribing in long-term care settings. These modifications were fully incorporated in NCPDPD SCRIPT 10.2, and approved by the NCPDP Board of Trustees in July 2007, with industry feedback indicating that NCPDP SCRIPT 10.2 meets the basic needs of the long-term care industry relative to e-prescribing. That now ends the history. Any comments there?
DR. FITZMAURICE: At the beginning under e-prescribing challenges in long-term care the second sentence reads comments from the healthcare industry indicated that the proposed standards, while well-accepted in the ambulatory setting, did not sufficiently support workflows and legal responsibilities in the long-term care setting. I would question where did the comments come from? Did they come from testimony at NCVHS or did they come in public comment to CMS' notice of proposed rule making?
DR. WARREN: That is why we referenced the letters.
DR. FITZMAURICE: So they came from us. I would tell the secretary comments to NCVHS and I would say comments at that point because you are saying something is changed over time to make the recommendation different.
DR. WARREN: So that's in the second sentence of –
DR. FITZMAURICE: Second sentence which says comments – I would say comments at that time November 2005 indicated. Comments to NCVHS at that time because then you are coming back in the third paragraph under that dark heading. I would say something like later in 2006 an e-prescribing pilot identified modifications et cetera and then these modifications are fully incorporated in NCPDP SCRIPT 10.2 and approved by the NCPDP Board of Trustees in July 2007 with industry feedback to NCVHS if in fact we got industry feedback at that time. So that the secretary gets a picture painted of we have this and because of industry response we recommended that and now things have changed. Here's how they have changed.
DR. WARREN: Why do we need to keep saying that the comments come to NCVHS? This is a letter from us about stuff we have done. Isn't that redundant or is there a reason?
DR. FITZMAURICE: You have a new secretary. The secretary wants to know that you are talking about comments that have come to NCVHS rather than comments that were received by CMS or other places that we have heard about.
MS. GREENBERG: I think that is fine but I wouldn't use that phrase at that time because it actually had to have been before then and that's why the November 2005 regulation contained the exemptions. I would leave out that phrase at that time.
DR. FITZMAURICE: We are painting the picture that things changed between then and now.
DR. WARREN: Yes, but we are using a past tense so I think that is obvious.
DR. FITZMAURICE: Sometimes you can't state things too bluntly for the secretary and her staff. Give it some thought and whatever you decide is fine with me.
DR. WARREN: Okay. Or you could say comments from the health industry to NCVHS had indicated. So that's definitely before. Is that acceptable with everybody?
DR. FITZMAURICE: You can say have indicated. Put it in the past as opposed to they still have indicated.
DR. WARREN: In this paragraph we are talking about the past.
MR. REYNOLDS: Judy, I am struggling with one. That last paragraph you read, the one that starts with a 2006 e-prescribing standards pilot. It said that 10.2 met their needs.
DR. WARREN: I was trying to go through that because 10.2 –-
MR. REYNOLDS: You said 10.2 met their needs and now we are saying if you don't 10.6 then you are not going to meet their needs.
DR. WARREN: We did a lot of cutting and pasting. Originally what we had in here was met basic needs.
DR. FITZMAURICE: I think Harry is right and what you need is a sentence that continues to paint the picture of the time that over time these things have improved and now we are up to version 10.5, 10.6 with the following improvements which you have added there. Just painting the timeframe so that they get a picture of things change over time and we want the standards to be the most current because they support the industry.
DR. FRANCIS: Why don't you just change meets to met and put that in the past tense following Marjorie's suggestions?
MR. REYNOLDS: If it is history then at that point it did.
DR. WARREN: Right. So it met the basic needs and then what we are doing is fully fleshing out the final.
DR. SCANLON: I guess I am confused now because it says these modifications were fully incorporated into 10.2. Does that mean it is 10.2 or is it 10.2 as modified?
DR. WARREN: They incorporated into 8.1 which then became 10.2.
DR. SCANLON: And then somehow we jumped to 10.6.
DR. WARREN: And that's coming in the next piece.
DR. SUAREZ: One other quick question. Through the letter it seems like somehow I missed the part where in addition to the Board of Trustees of NCPDP approving this. There is an action of adoption by the secretary. In other words when you read this paragraph it seems like NCPDP decided to go and then approve it.
DR. WARREN: I mean one of the things we were able to do with 8.1 is when we went into rule making, notice of vital rule making. We were able to say in there that you can adopt any version that was back with compatibility to 8.1. If we didn't have that then we had to go into a whole new rule making process for regulations. We didn't want to get into that because that adds like a year to the process. What 10.2 was was background compatibility. There did not need to be a requirement for the secretary to adopt it because it met the criteria back to compatibility. So CMS just went ahead and did that. Now we talk about 10.6 in order for CMS to go with it it also has to meet the criteria of that compatible, which it does. Does that make sense? I mean we are going to be talking about that later.
DR. FITZMAURICE: We are talking about the November 2005 regulation on the first page. Are we recommending that that regulation be modified?
DR. WARREN: No.
DR. FITZMAURICE: Are we recommending a new regulation be put out?
DR. WARREN: No.
DR. SUAREZ: We are recommending that the secretary adopt.
DR. WARREN: Adopt 10.6, which is backward compatible to 8.1. We don't want to go through final rule making again.
DR. FITZMAURICE: Agree but we can modify regulation without going through rule making if it's backwards compatible. We ought to think about telling the secretary what we want her to do.
DR. WARREN: We do in the next section of the letter.
So now differences among NCPDP SCRIPT standards or SCRIPT versions. NCPDP 10.5 was approved by the NCPDP Board of Trustees in 2008. This version built upon NCPDP SCRIPT 10.2, supporting an XML implementation section and a Health Information Technology Standards Panel recommendations for Medicare management use cases; making changes to the PVD Segment prescription fill status notification and inserting the new PVD Segment fields and additional clarifying notes.
The NCPDP has further advanced its SCRIPT standard in other areas to achieve Version 10.6, preserving all the previous NCPDP SCRIPT standard requirements needed to support e-prescribing in long-term care settings. The additional new functionalities offered by NCPDP SCRIPT 10.6 are primarily related to the medication history functionality, which was adopted in the April 7, 2008 e-prescribing final rule. These include prescriber order fill number added to medication history response; source and fill number information added to medication history response; a sold date value added into the DRU segment date/time period qualifier; enhancements to the DRU segment enabling a physician to include prescribing-time drug utilization review alerts and comments to the pharmacist when communicating a prescription. This applies to retail, mail order and long-term care pharmacy settings; and an allergy segment and diagnosis segment for use in the CENSUS transaction that allows sharing of a person's full allergy and diagnosis profiles with the pharmacy at time of admission and/or changes in their allergy diagnosis status, to help pharmacists catch additional, potential drug-drug interactions.
Next paragraph. In addition to remediating e-prescribing issues in long-term care settings, these revisions facilitate better record matching, duplication reduction, and richer information being presented to the prescriber at the point of prescribing.
The long-term care industry has expressed its readiness to NCVHS to embrace e-prescribing so that it can enjoy the potential workflow and patient care benefits. NCPDP has certified that Version 10.6 is backward compatible to Version 8.1, which is currently the adopted standard. And then we put the footnote again referring to our previous letters.
Does that answer the questions about where we are going and why we are at 10.6?
DR. FITZMAURICE: I think it does and as far as to what the secretary has to do, the secretary will figure it out or the people she gives it to will figure out what they have to do.
DR. WARREN: Let me get on to the recommendations. Recommendation one. Notice that we shortened these given the guidance that we got yesterday from the committee. Recommendation one. The NCVHS recommends that NCPDP SCRIPT Version 10.6 be adopted under the streamlined process for backward compatible standards.
Recommendation two. The NCVHS recommends lifting the current exemption from the requirement to use the NCPDP SCRIPT standard for non-prescribing providers in long-term care settings. We believe lifting the exemption sends a clear message to the industry about the desirability of e-prescribing in long-term care.
Any questions?
DR. SUAREZ: The second recommendation requires rule making?
DR. WARREN: No.
DR. SUAREZ: The lifting of the exemptions. Exemptions were under the rule.
DR. WARREN: No. It told us it didn't. That was the advice.
PARTICIPANT: Probably just publishing under the federal literature.
MS. GREENBERG: Who are non-prescribing providers?
DR. WARREN: That's the hang up that we have in long-term care. We have a third party that is involved in long-term care with prescribers.
PARTICIPANT: Who is it?
MS. GREENBERG: But that's the nursing facility itself, skilled nursing facility.
DR. WARREN: But this standard is used to prescribe medications, right? So the way it works in long-term care is we have patients in a facility that are cared for usually by a nursing staff. We have patients in a long-term care facility that are cared for by the nursing staff. Physicians are not in residence. They rarely come to see those patients unless they are called on to come monitor those. When they write prescriptions the prescriptions are written in a very different format than ambulatory care. Ambulatory care has an in date and they only authorize so many refills. In long-term care it's an open-ended prescription. So there is a different way of writing that. Also, in an ambulatory setting it is usually the patient or family that dispenses the medication. In long-term care it is the nursing staff that dispenses the medication. There needs to be a way that we document in the e-prescribing what those different roles and responsibilities are.
MS. GREENBERG: It is still the physicians who are prescribing, right?
DR. WARREN: Or nurse practitioners that may be servicing the facility.
MS. GREENBERG: Who is the non-prescribing provider?
DR. WARREN: The facility. Facilities can't prescribe.
MS. GREENBERG: But they want to use the standard.
DR. WARREN: Yes.
DR. HORNBROOK: To enable their nurses to facilitate management of the drug.
MS. GREENBERG: They want to use it for prescribing purposes.
DR. WARREN: Yes. Because most of these patients are –
DR. HORNBROOK: -- nurse facility.
DR. WARREN: It is a way to attribute responsibility of getting the prescriptions and dispensing the drugs. Otherwise most of the long-term care facilities or the skilled nursing facilities will not be able to comply with the Medicare Part D and probably most of their patients are on that insurance.
DR. FITZMAURICE: I may be taking out a couple of words that Karen will want in there, but if we read it as NCVHS recommends lifting the current exemption from the requirement to use NCPDP SCRIPT standard for and I would say for prescribers in long-term settings. Well that skirts the issue of who is doing the prescribing which says for prescribers in long-term settings.
MR. BLAIR: Well actually both Karen and Denise spend a fair amount of time yesterday on the language of that. Unless it is really necessary I sort of feel a little uncomfortable making any changes in the language because I felt that they had it the way they needed.
DR. FITZMAURICE: I think you are right. We want to be guided by what it says because they are going to have to respond what it says and that is why ref(?). If they want those exact words, let's leave it an even. If we're confused they won't be confused and they need to get this in front of the secretary.
DR. WARREN: These were the words that they wanted in the recommendation.
DR. HORNBROOK: I don't know. Does it help to realize that most of these patients are institutionalize for a very strong reason and it would be torture to move them out of the facility to go to a doctor's office? The doctors of course don't want to spend the time to travel from their office to the nursing facility and do rounds everyday to update medication. -– and changes on updates on a daily basis without having physicians having to get in their car and drive.
DR. WARREN: I don't think we need to go through the workflows on that. Walter and then we can start –
DR. SUAREZ: Just to suggest a link being so that there is no confusion that the first time that the known prescribing right up here is the very last sentence. I would suggest in the first page in the last paragraph, first page of the letter, last paragraph, last sentence it says therefore long-term care facilities were exempted. I would just then suggest adding therefore non-prescribing providers in long-term care facilities were exempted. That way when the recommendation comes in it says lift the exemption.
MS. GREENBERG: Maybe prescribing providers in long-term care facilities were also –
MR. BLAIR: That's exactly right.
MS. GREENBERG: They both were. But I do agree that this introduction in the recommendation of this term of art non-prescribing providers, which almost seems like an oxymoron when you are talking about prescribing, is confusing. It is confusing to me and I think what people focus on are the recommendations and if you have never defined what you mean by a non-prescribing provider in a letter about e-prescribing. Unless you are really into the art –
MR. HOUSTON: Is that an accepted term a non-prescribing provider or is that just something that –-
DR. WARREN: It was a word that Karen and Denise both –-
MR. REYNOLDS: Let's do this rather than just throwing it up in the air to Karen and them. I think it is a great point. I think it is something we need to do. I think I would like to recommend that if we accept the rest of the letter that we work that out with CMS so that it is not hanging there on its own at the very end and somebody would want to do something and give the leverage to the co-chairs and then I will assure before I sign it that it is there. I would like to see if that is acceptable to the committee. John, you were going to say something.
MR. HOUSTON: I am just thinking. I understand the point. I am just thinking that maybe we better think of the solution, but basically these are providers filling prescriptions on behalf of providers. Long-term care facility is for filling a prescription ordered by prescribers.
MR. REYNOLDS: Filling it.
MR. HOUSTON: On behalf of the patient. I thought they really were acting on behalf of the physician who is actually writing the script.
MR. REYNOLDS: Again, we have a string of letters. This is a strong subject. I think that we do need to clean that up. We do need to do that.
MR. BLAIR: Could I make a motion that –
MR. REYNOLDS: I would rather that the co-chair not.
MR. HOUSTON: Then I will make the motion to Harry's point which is to allow them to clarify the language in this letter to satisfy the concern and that based upon the discretion of the co-chairs as well as Harry that we complete the letter and have it issued.
MR. REYNOLDS: And if you would consider amending that that we only change the item around that subject then I would like that as a much better motion.
MR. HOUSTON: Subject to the sole change based upon style -–
DR. SUAREZ: I will second that but just to clarify. There were some changes done during this discussion.
MR. REYNOLDS: Those were already incorporated. As amended already and then we only amend the issue around non-prescribing –-
DR. SUAREZ: I will second that.
MR. REYNOLDS: All those in favor. Opposed. Okay. The letter is passed. Thank you very much.
Let's go on to our next item. Susan, Have you dialed in?
PARTICIPANT: Are you in your pajamas?
KANAAN: Yes. No, but I have my coffee.
Agenda Item: Health Data Stewardship - ACTION
MR. REYNOLDS: That's good. We will try not to say anything that will make you spill it or anything. All right if you will turn to 10 of 5 of the book. If you remember in a few others of our discussions we decided with a lot of the work we had done in secondary uses and especially as it related to stewardship that we would actually put together and we had talked about it at some other these meetings. Put together a primer that could be used on a continuous basis by people. Let me give you a good example of how some of our documents are used. I was speaking to somebody that was at the quality meeting and this person spends a lot of time talking about meaningful use. They took our document and then the 17 observations put it into a PowerPoint and it made 30 presentations using it.
Okay so understand a lot –- by condensing a lot of this stuff thinking about the subject we are not leading anybody to a final answer in some of these cases; however, we are teaching people how to think about thinking about it and then how they might use it. That's what the purpose of this is to let people start somewhere using the benefit of what we have heard from a lot of people. This is just not us right now and that's how I think we can make a continuous difference because there are very few committees that are in that position on some of these subjects.
So as we go through this the first thing I would like to do I would like to highly commend Justine and Susan Kanaan. They have done a great job in helping out with this. So those were the two real players and I just happen to tag along. Thank you to both of them very much in putting this together.
Again, other than the first page and kind of our vignette everything else pretty much comes straight out of some things we have done plus as you go to page seven it talks specifically about other things that are going on. So this would allow a person to read the first six pages that are bulleted and set in good categories and then actually go to other people's work besides ours that has been created to really get a good sense of what this subject is about. This has been out to all of you. We have gotten limited comment back assuming that you like it. I'm not sure it is necessary to read it, but I will be happy to go through page by page and if there are considerations because this is not a set of recommendations. This is not adjusting anything we have already said. This is solely taking a look at what the industry has done using our own work and packaging in a way very much like we did the privacy and confidentiality document that all of you got a copy of yesterday.
DR. SUAREZ: I think the document is great. It is great and short as opposed to some maybe other documents that are produced in our industry. This is very short and sweet. My question is really about I tend to think all the time about what is the outcome. What is the deliverable? And what is the purpose of doing this? Are we to say we are just assembling a number by items and helping to clarify this issue? Is the purpose of doing this setting the stage for developing a framework that people should follow or that people should look into or what are the actionable activities out of this? What would be gained in the industry by having this in place? Who is going to follow it? What it is going to be used for? I think it would be helpful to define those items so that we can give those that are going to read this and look at a sense of what is expected to be done with it.
MR. REYNOLDS: I would say we don't necessarily expect anybody to do anything with it. We're not being prescriptive in any way as to what people should do. I think the key thing is and I hope I had said that earlier is this whole subject of data stewardship, this whole subject of all this data moving around, everything that we are talking about right now. The EHRs and everything that are going on is – and one of the things we said before we started this is we spend a lot of time in our meetings with the learned on these subjects. There are a whole lot of people starting from zero out there about how to deal with this stuff. The reason it is called the primer and not an advanced degree document or nothing else is to really have it out there available. It is a little bit like our thinking on meaningful use and some of the others. A primer on how to think about it. A primer on how to do (?). Carol had a comment.
MS. MCCALL: I guess my question would be for our discussion is given that we do have this, are there other things that we would like to see done? Are there other things with the document or the ideas? Are there other things that we are being asked to do to try to take it to another level and if not then it is what it is. So it's really are there next actions for us? That is my question.
MR. REYNOLDS: It is a by-product. Remember it is a by-product of work we already did and others have already done. So it is not that we have taken up -– now we could and that is part of what I hope to hear from the subcommittees. You know we could take up any kind of subject we want to. We have already taken this subject up through secondary use and some of the stewardship stuff that came out of that. So have others. But there has been no way to synthesize that in any way that somebody could deal with the subject other than trying to go out in the Internet and other places and find it. That's what we have been doing. Marjorie.
MS. GREENBERG: Just getting back to Walter's question. Obviously we are going to post this on the website but are we going to send it to somebody because then just a brief cover letter from you could say why we did this. It is a product of the committee. Although we are not telling people to do anything we did it for a reason.
MR. REYNOLDS: Let me go back to yesterday. We didn't do that here. We didn't do that with this document.
DR. SUAREZ: The first word in that cover is very important. The very first word in that cover is very important.
MR. REYNOLDS: This was our recommendation. The very first word will be very important on this one called the primer.
DR. WARREN: I would just like to answer Walter.
MS. GREENBERG: Excuse me. Could I just clarify this? We are sending this out to the whole NCVHS mailing list, right, with a little cover letter from you. We could do the same thing with this primer. We could send it to the whole mailing list with a cover note from your or we could send it to ONC, the data council. It is relevant. I mean I think we should push it out.
MR. REYNOLDS: Well one thing I have been responding incorrectly. Let me step back for a minute before Judy you get your point. We have discussed this in this group two or three times. We were assigned to do it. We did it. We weren't done with it. I'm not going to sit here and defend it. I'm not going to have Justine and I. We were assigned to this. We were asked by you as a committee to do this. We did it. What do you want to do with it and that's going to be your further input in this subject. So Judy and then Larry.
DR. WARREN: From my perspective as an educator right now there is enormous pressure for us to educate new health professional students according to the standards that were laid out by the IOM report that laid out five criteria. One of those is informatics. Most of our faculty regardless of what discipline they are teaching in have not a clue how to incorporate informatics into their curriculum.
I have been asked to come speak at two our major in nursing accreditation forums and also in dietary and nutritional sciences. They are desperate for something that is to the point that they can get their arms around. The data standards, stewardship thing is a little heavy where the primer would be ideal for faculty to say here it is. Not only faculty but students to ask it for as a reading to help faculty understand where this fits in because while they do a lot of the stuff with secondary use of data they do not see it as an informatics or an information technology or any of those things. So it is hard for them to talk to their students.
So we are still turning out a lot of brand new practitioners who really don't understand how we manage statistics and data in this country and it is vital that we put them out. So I think that even if we don't send this out to anybody, the fact that they will find it on the website that there are a lot of us that are going out and giving presentations, using the URLs, and especially this is short enough that I can duplicate it and put it as a hand out to one of my talks where the other manuscript wasn't as huge. So don't underestimate how this can have a generator effect when it goes out.
MR. REYNOLDS: Okay we got Larry, John, and Dr. Sondik.
DR. GREEN: I agree with Judy. I think it is important to push it out. It is just another product as a regular product. Whatever mechanisms we use for our reports I believe should be used for this. I think it is quite useful. I do think it needs as Marjorie was suggesting an explanation possibly from you, Harry, as the why so to position it properly. One detail I would ask you to consider getting rid of one thing and that's HIPAA defined de-identification. The real issue is de-identification however it is being used or whatever HIPAA has one way.
MR. REYNOLDS: Where is HIPAA.
DR. GREEN: Well, in the summary it is in what specific practices we are suggesting for data stewardship and then in the body of the letter it is on page five number five. HIPAA defined de-identification. It is not just about HIPAA. It is about de-identification.
MS. GREENBERG: You could say HIPAA defined or otherwise.
DR. CARR: I think it was coming from the other direction that when we had the secondary uses hearings we heard all manner of de-identification which did not meet the criteria of HIPAA de-identified so I think we were trying to make it more stringent. I have two comments. One is the Center for Democracy and Technology as a draft that I saw in April and I think maybe it's about to come out about de-identified data so I think we should reference that, and here somehow, Susan, if you could find out if it's out yet. Then we can fix that so that it represents that at least HIPAA and beyond.
DR. GREEN: The key point that I think is evidence underlying this that requires us to be attentive to in some way is we came to the conclusion that there is no such thing as de-identified data anymore. Remember? I said that if you want to badly enough you could basically re-identify just about anything.
DR. CARR: So the CDT has done just a wonderful summary and narrative on that. There are a couple of things in here that I see we need to tweak too. If the outcome of today is that we approve it then we can make sure that gets addressed.
MS. GREENBERG: There is a reference to the center, reference 11 so maybe it just needs to be updated or something.
DR. SONDIK: I actually had I guess a concern about the list from 1 to 10 in that I think that is really the core of this and yet people who need a primer I think are going to look at the list and not know what it means, not know what any of the 10 actually mean. For example, you sent this out to I don't know here is something you could give to students and so forth. When it says transparency for the individual about the use of his or her data, I think it needs an explanatory –- for me it would be deal to have an explanatory paragraph to what transparency means and since de-identification again is something that for the uninitiated I don't think they are going to understand it. The oversight of data uses I think is really -– that's an extremely important point, but what does that mean oversight by whom and what does oversight actually mean. Obviously this is a very difficult subject or complex whatever but I think my suggestion is to add something under each one of these so that people can walk away with something.
The other point I would make is this emphasizes evolving. I don't know that the principles and practices are evolving per se. I would think the principles are pretty set. I would not emphasize the evolving. I think clearly it is evolving but I think to give somebody something and say well it is evolving and this maybe you know not useful in six months. I'm not sure that much of a service.
MR. REYNOLDS: Are you responding to Ed? I'm going to come right around the table. I see everybody's hands. I'm coming right around the table.
DR. CARR: I think that there are two considerations with regard to your question about further detail in the 1 to 10. I agree with you that we can put more definition around what do these words mean but I think we intentionally did not go down the path to say so is oversight an entity, a person. This is the evolving definition of whether there will be a national entity or a local entity or one person or many people. We wanted to stay out of how it will ultimately be solved by simply to raise that it is recognized that whatever the configuration there needs to be oversight or de-identification. I think we can probably improve this a little bit to take some of the words down to more lay person language or a little parenthesis or something about what the term mean not what the solution is.
MS. MILAM: My question is for Justine and it is probably because I am fairly new to the committee just a year and have not been involved in the quality discussions, but my question does go to the 10. When I look at the framework it is very similar to privacy principle framework with the exception number 5 so I am wondering what the difference is between data stewardship and privacy and security.
DR. CARR: I don't think it's an either or. I think stewardship is sort of an overarching concept and rather than take it to quality, privacy standards or whatever just an overarching construct that applies in an array of venues.
MS. MILAM: I guess I am saying when I look at the 10 this is really identical to a privacy framework and these principles –- and there are a variety of those frameworks out there that have varying degrees of height, very global ones that fair information practices that are identical to this ONC issued one in December that gets into some drilled down a little bit with health information and movement of health information. This really is a discussion for me about privacy.
DR. CARR: Well I mean there is more to it let's see in terms of the use of data and sound statistical principles aggregating and so on. So that's a little bit beyond privacy. Are you saying we should be referencing? Again, this has been evolving because so many publications even have come out since we began this. Are you looking to reference some of the prominent privacy documents or ONC?
MS. MILAM: Not necessarily. What you just said with respect to the sound principles that guide how you use data I am wondering if they should be more reflected in your framework. You could capture all but number five and say application of privacy framework in one and then have more and unless that's not the emphasis. To me this is a privacy framework and it doesn't capture what you spoke to in terms of appropriate use of data in research and in other approaches.
DR. SUAREZ: What number five are you referring to?
MS. MILAM: The HIPAA defines de-identification in the list. When you look at privacy frameworks that are typically not an item but all of the others are.
MS. GREENBERG: Six is an item too?
MS. MILAM: Yes.
MS. GREENBERG: In a privacy framework?
MS. MILAM: Right. Security is typically the item and data quality and integrity are part of security.
MR. REYNOLDS: Okay. Carol, let me hear your comment and then I am going to recommend something here. I know the rest of you have questions but I am going to say something that will make you not have questions right now.
MS. MCCALL: First of all a quick response to the current discussion. If it is very similar to a privacy framework then I think that that can be addressed and it can be changed because it is not meant to be the same. I would say that data stewardship subsumes privacy and not the other way around. Part of stewardship is privacy but it is also integrity. It also is all the things you need to do to enhance meaningful use and measurement and all the good things you want to get from data. If that were the case if they are too familiar now then I think that would be on our list.
The second is that as a primer these are sophisticated concepts so I would certainly support adding a paragraph or something to introduce it not to teach everything there is to know.
The third would be that in terms of our actions look we are not going to start publishing massively on data stewardship, but I do think that the concept is evolving and that we should start to use it more and more in our own work. The question is could it actually be a living –- maybe not document per se where we will always be writing but the links become –- that we become a place where people can come and kind of say well I'm data stewardship. Is that something that we could do? That is one idea.
The other is to make it a more intentional part of our own work product that every point that when we are talking about future publications or future recommendations that we always make sure to have a section on what the data stewardship principles are. Make it part of the language. So that's the other.
MR. REYNOLDS: Okay. Here's what I am going to do and I stop there because here is what I have to say. This document has been in all of your hands. We got no feedback. What we have set is ground rules in this committee is if you get something out and it is coming in this room and we ask you for feedback well in advance and you don't give us any, I don't find it at all comforting. It has nothing to do that I was part of the author of this. I am speaking as the chair. It is not comforting to come in here and now everybody decides that they care. We have all signed up for something. We have all signed up for a responsibility. I asked you to please take it. When it comes out we have said to each other many times we want stuff sent out so we can have a chance to look at. We can have a chance to comment. It's not working guys. I know everybody is busy. It's not working. Great discussion. I'm not even going to act like we are going to pass this today because now we are finally getting what we want and after we spend the time putting it together at your request I am not anxious to sit here and now get it and try to react in a time where we can say okay can we add this, can we add that, can we pass it, is this okay. I'm not going there. That is not the way we have agreed to work with each other and so consequently we wanted that input. So I welcome it. Everything everybody said we greatly welcome. Man, let's do it earlier guys. Let's don't do it after we have two or three meetings on it and then we discuss it and then we come in here and everybody now has an opinion of what it looks like.
DR. CARR: Well, Harry, I would add though that I for one think better when I am in dialogue as opposed to in isolation editing. I have edits from before now but when I hear what Sallie says and what Carol says and what these questions are it stimulates a higher level and I think that's what makes our product better. I agree with you that we are not ready to pass it today but -– if we could have more input.
MR. REYNOLDS: I love the discussion, but to have had no comments. Some of these things are base beliefs. I know you guys well enough. Some of these things you have looked at it and they are your base beliefs. Those base beliefs if you looked at it and you even perused it those base beliefs would have jumped in your face. That is all I am asking as we go forward. I am going to stop the discussion and put all your hands up you want.
DR. FRANCIS: When a document comes around and I read a written document I think in terms of editing or making little comments on the document that is one kind of thing you can do. This is a just a proposal. I wonder if there is a way to set up a little blog that we could communicate with and post some more general comments like Sallie's because I don't want to hit the reply button and send an email around to everybody that says gee I like this and I wonder about that. People don't read those either and it is kind of irritating and I don't whether to send it to the author or you. But if we had a little forum that we could each post our comments, we could have something like -– I don't know what we would do about having it be public but we could have something like the discussion that just –- envisions.
MR. REYNOLDS: Blackford and then I'm going to cut this off.
DR. MIDDLETON: Actually I think it is a very important sort of line of reasoning that we might want to pursue, Harry. I struggle in the committee sometimes and this is now a generic comment not about this document particularly about the group editing process. It's not what I am accustomed to and any other committee I am in typically there is a subcommittee which is responsible for authoring and when it gets it right it submits it to the full committee or even to the executive committee depending upon the channels and the authorities for approval and then action. So that is one observation. I wonder if we might model that process a little bit more in this committee because personally I find it very difficult to group that and I tune out.
Secondly though I think Leslie's idea is very interesting. There might be ways in which we can play gosh some technology to have a way for us to communicate with each other and to share and comment on documents that is extremely efficient. It is asynchronous. It allows me to do it when I can do it and all the rest of it. I would be happy to help look into some of those.
MR. REYNOLDS: Okay. And on this particular one so as we move it forward for our next meeting. Susan, you are the repository of the comments, is that correct?
MS. KANAAN: Correct.
MR. REYNOLDS: So I would like anybody that has any comments about the style, about anything to go to Susan. Susan will work with Justine and I then we will be the ones reporting to the full committee if there are style changes if there are other things that are going on as we do it.
DR. WARREN: Harry, how do we know what comments that are there? I mean I have comments that comments that were made here that those comments were made just to –-
MR. REYNOLDS: We just did meaningful use exactly this same way. We passed them all to Margaret. She came out with what the questions and comments were. We sent them back out to everybody. I am saying we got to go in one place. We have asked Susan to kind of help us coordinate this so she sees the whole picture. That's what she has been doing. Then we get the comments in and then we shoot them back out. If somebody says a style thing, this doesn't happen, this doesn't work then fine. We put that back out to everybody and then we come out with a recommendation. So basically we are the subcommittee in this just like I would expect the quality subcommittee to do something or something else and then we say what's going on. Again, it has to come to this full committee anyway. Walter, Mark, John.
DR. SUAREZ: I do take full responsibility for not looking at this before and yes needed is an issue. I just fell through my pile.
MR. REYNOLDS: I don't need an apology. I am just making a point. How do we go from here?
DR. SUAREZ: This is a very important topic. This is a topic that is out there as a new concept. Data stewardship is something that in the context of all the discussions that we have about privacy and security data stewardship it gets kind of down in the not so noticeable area. With my original comment when I started this, which might have caused some of the issues here, my intent was to actually elevate this because I think it is too important. I think it is one of those leading things that a committee and we talked yesterday about what this committee can do to take certain items and ownership on certain items. This is one. I think there are parts where we talk about a framework, an opportunity to create a framework and data stewardship that others can look upon and reflect on and probably follow because that is what we want. As much as this is a very useful element where (?) and I also teach and I also use this or would be looking at using this. I think it goes beyond that. I think it goes into the opportunity of actually demonstrating how organizations can incorporate this into their practices.
ONC published in December the nationwide privacy and security framework for health information exchanges. Five of the principles are identical to the ones that we have here. It is going to be very important to create a document that has something goes beyond being a primer and that's my point. That was my original point. I think a primer is good but I think we have the opportunity to take this and elevate it into a much larger discussion and much larger opportunity for the committee.
MR. REYNOLDS: And that will be our next assignment. The current assignment was a primer. If we want to change it to something different, good. I'm in. Mark, John, and Jeff.
DR. HORNBROOK: I just have a question for clarification. Is the primer supposed to be aimed at anybody including all healthcare workers who have access to healthcare data as part of their jobs or is it supposed to be aimed at researchers?
MR. REYNOLDS: The word primer should play across all audiences.
DR. CARR: Paul isn't here but he raised the issue that he felt that the story in the beginning, the example of the parent, the child was kind of simplistic for a sophisticated audience. I think it may be and especially now with ONC coming out with there thing. It may be that we want to get to a less sophisticated audience. I think it is important.
MR. HOUSTON: I actually think the primer is really good. I think that the one area that I would be interested when you talked about putting a cover letter in place. I think that is the one area that I think that I guess knowing who the audience that the cover letter this is going to and what the cover letter is going to say I think is extremely important. Judy had made mention informaticist. I think data stewardship is an overarching principle that -– the principle is wide reaching. The question is how far do we want to send the letter or how far do we want to send this out is really my only question at this point in time. I think the tone of the letter then chances based upon who we think we want to send it to initially because I think data stewardship is a great description. I think the letter though can set the tone of how important it is, how public trust is part of this, and that I just want to know what the scope of distribution is going to be.
MR. REYNOLDS: And I welcome recommendations. So whatever we think is right I want the input from you so please send that in. Jeff.
MR. BLAIR: I wanted to echo Harry's observations about the process. As difficult as it is for many of us to break the time to wind up responding to a document when it is set out for comments and edits. If we don't do that and we save all of our comments to these meetings, the agenda has a limited amount of time for each item and we need to manage the process in a way that when we get all together it should be the fine tuning, the final edits. If we start going through with 18 people around the room going through basic reconstruction then our productivity will be reduced tremendously and we have years and years of NCVHS being very productive but it is critical that all of us need to get most of our comments in before the meeting and not let it wait until these open sessions.
MR. REYNOLDS: Okay so to close this. Great conversation. Understand we are about to put a document out from the entire group. We need it to be the document that the entire group wants. We need to make a difference in this environment. I would say I would add one other thing. Any company in healthcare right now that is being audited this is helpful too. I don't care who you are, what you are, where you are, what your title is, and where you play. If you are a department that is getting audited, this is something you ought to be thinking about as a company and then the education I think can't overestimate. Marjorie, myself, Justine and Susan will get together and figure out exactly how to do this. Blackford, thank you for your offer to help and it may not be on this one. It may be the next one. I want some people to work on that. But we will get together to figure out how to tell you to get the comments in and I want those comments and as those comments come in we will categorize the comments so that Judy back to your point. If somebody makes a point or there are a number of points made, everybody knows that that point was made and maybe what we did with it a little bit like we just do some of our other and especially where they are conflicted. So we will be happy to do that. Great discussion.
MS. KANAAN: Harry, may I add one thing if I may? Just to assure people that -– it is very interesting comments about the sort of bilateral conversation between individuals and need versus the multi-lateral conversation. In terms of substantive comments or sort of global comments versus micro comments I want to assure people or remind people that they are always welcome to send an email just a general comment and I will take that just as seriously in terms of the way I approach a document. This is kind of a general comment about our process in the future. You may very well have comments that transcend specific parts of the document. Please don't hesitate in the future to send me those kinds of comments.
MR. REYNOLDS: We will set up exactly what the process is. I like that but you and I will talk some more. Marjorie.
MS. GREENBERG: I just wanted to follow up on Blackford's comments because Blackford has also mentioned in previous meetings and I don't want him or members to think we have ignored that. You know the fact that it would be helpful to have some kind of just to use a term like SharePoint where you mentioned the blog. Something that is just within the committee and password protected whatever where people can be working on documents or having discussions or comment. This room is crazy because I can't see anyone who is behind this post. Could you come to the table? I know Kathryn has looked into this. I can tell you that I have like in my WHO work. We have a SharePoint. There have been lots of problems with it. There has been minimum use of it. It has its down side, but the idea of it is very good and certainly this committee should be as you said oh my gosh harnessing technology to the extent that we can to improve the way that we communicate. We obviously use email a lot. We can send emails. You know list serves. But there are other more current modern technologies, but figuring out how to use them in the context of where we sit here in CDC and the department has not been entirely easy or clear. Do you want to say anything about that? But we don't want to give up on it. We accept your offers to work with us on it.
MR. REYNOLDS: I want to assign it to somebody here today. I'm going to assign it to somebody.
DR. MIDDLETON: One quick follow up and I would love to hear where we are it is gosh we can make this also part of a green initiative. I don't give paper for a lot of meetings I go to. This is one of the few meetings that I still go to and I get paper. Other boards and committees and what not use the web, director's desk, and other things to make it –-
MR. REYNOLDS: Kathryn, go ahead.
MS. JONES: I guess it would be nice to understand how many folks here would be interested in something like SharePoint. Unfortunately we can't because -– at least CDC has determined it is not very cost effective at this point but we have something similar called sitesby(?) and that is something that we can offer to the committee, but we wanted to make sure we had enough people who would support the product because it is going to require quite a bit of time to build it and it is going to require quite a bit to train staff to continue to support it. We certainly would be happy to work with –-
MR. REYNOLDS: I would say this as having been on the committee now for just over five years. Email when we are doing this letter when you get 25 emails and you are trying to chase the thought process it's got to be better. It's got to be better some other way where you can pull up one document and you see the CEC the deal. This chasing the string sometimes leaves some people out because if you can't read all 26 comments on something you can't stay current.
MR. HOUSTON: I apologize for missing the first conversation. This is just one piece of the bare puzzle though. I know privacy is going to be doing more and more conference calls and doing collaboration during conference calls are of really great importance. You know whether it would be putting up a PowerPoint which is easy but often interactive editing via the web while you are on a conference call is hugely importantly to us because the amount of time you can save by being able to look on a screen as you are talking as somebody is typing just like we do here as we are doing conference calls I think something that I think we need to do.
DR. SUAREZ: It sounds like we are talking about three different things. One thing is the web X type tools for meetings. Another thing is the SharePoint type tools.
MR. REYNOLDS: Here is what I would like to recommend. Who is willing to work on this issue with somebody maybe Kathryn from Marjorie's staff to understand what we need to do. We've got Blackford. We've got Leslie and we've got Mark and John. The point is who will take the lead?
(Dr. Middleton raised his hand)
MR. REYNOLDS: Okay. Set up some calls. Put it together or do whatever. Do whatever you want to do. The point is if we are going to change it, let's change it. If we are going to change let's get people together to do it and that's great. I'm all for that. Because I will tell you email is becoming a struggle when we are doing any of these documents because you really do have to chase a lot of comments and as soon as the next person agrees or disagrees now you are really weaving. I look forward to some kind of a comment at the September meeting.
On this document we will get together. We will figure out how we are going to handle this one. Great discussion. Exactly what we wanted. Nothing should come out of this committee that doesn't make a difference and doesn't make a difference the right way. I don't care if it takes until the end of the year to get it out now because we are not going to put it out before its time and help us understand when its time is and what it should say at that time. Any comments?
MR. HOUSTON: Who uses Facebook here? The reason I ask the question is in terms of setting up groups and having group dialogue in an informal way sometimes is very helpful when you are trying to simply get a little bit of information about something. I mean I think we can set up a link in.
MR. REYNOLDS: You are part of the committee that is deciding this and your committee can meet whenever. Next item. Health statistics for the 21st century.
Agenda Item: Health Statistics for the 21st Century - Update
MS. GREENBERG: Let me just tell you what just got on the agenda. At one point we actually thought we would have our consultants on the phone today and give us an update. Instead they provided you with an update under tab six and since this project is really being overseen by the population subcommittee, they were on the phone yesterday during the population subcommittee break out session. Before or in lieu of Debbie and I saying anything at this point I was going to ask Bill and I am sorry I didn't ask you in advance, but since it's probably part of your report anyway if you just wanted to provide from the co-chair's perspective an update on what is happening with this project and then we can add anything.
DR. SCANLON: Let's start with the premise for the project. The premise for the project was the vision was done a number of years ago without sort of the appreciation of what might be happening with respect to information technology and that the idea of updating the vision to take that into account seems as a good thing. Now I think if the update project if we think about that sort of as a discreet event and to start with it that it's been transformed dramatically by the fact that now we no longer have ITs as this hypothetical potential future tool. We suddenly have this reality where there is going to be a lot of it. The question is how well are we going to be able to harness it and so the environment is incredibly dynamic and moving rapidly.
The issue here is now the work that Dan and Gib are doing in terms of trying to update this vision seem even more strongly than before as the jumping off point for the population subcommittee to think about how do we transform. What is happening in terms of the collection of population health data and take sort of as full advantage as we can sort of the IT investing that are being made.
We are in the conversation that we had yesterday with Dan and Gib we agreed that they are going to come and report to the full committee here in September but we are going to try and coordinate through populations in August sometime sort of when they reach tentative conclusions about what information that they have gathered so the population can think about its next steps at that point. The anticipation always that what Dan and Gib are doing is interviewing a series which might call key thinkers about this topic, but they are obviously not having hearings and the idea was that the populations would follow with both hearings as well as a set of potential actions in different reports, different recommendations. We want their input to be able to plan that next phase and we can come back in September and talk about what that next phase is going to initially be involved.
MS. MCCALL: Just a few questions on where they are. Were they able to share any of the content on their interviews or are they still just kind of saying here is where are process was?
DR. SCANLON: They did not share the specific content. I think they are about half way through their interviews and what that characterization of those interviews was that they were getting very different input from all these different people. It's probably not necessarily an issue of conflicting input but just –
MS. MCCALL: So with that as a backdrop my broader question is whether or not the update will actually come out and result in a document that is published under our names or is it going to result in something that is not going to be published or would it be an update to the 21st century document under their names? Then I think I am going to go back and pull on your theme and pull it into this particular subject if it is going to come out under all of our names I think we all better be deeply involved in terms of when they finally do have the content coming from the interviews and there are points of view around that how we are all as a group kind of the raise your hand, jump in are going to be involved with that. So what in fact is the output going to be and is it going to be a paper published or a book with our name on it?
MS. GREENBERG: This has evolved a bit and is still evolving, but the original idea was that it actually that the national committee with the help of these contractors would come out with an updated vision for health statistics in the 21st century. Now to do that in a comprehensive way, fully comprehensive way it probably would have been necessary to revisit every single one of the recommendations. If any of you were around then or maybe you weren't but you heard about the process, it was certainly -– Ed Hunter was here but Ed Sondik was very involved. He in fact initiated this project. It involved workshops. It involved hearings. It involved a lot of work that much of which is captured in the report but also was captured in an entire volume on health statistics sort of one of a kind because about how statistics that was published a number of years ago now. Well not that long ago or maybe five years ago. When that came out I said to my staff I could now die happy. I think it was a premature statement on my part. It was a big effort.
We have scaled this back for a lot of reason not only resources but just utility to say okay we have worked with the committee, Gib and Dan, on prioritizing the recommendations. We know that some of them had no traction whatsoever. Others had some. But we do know that first we got feedback from all of you that the basic concepts, the vision, the principles still resonated as Bill said, but they did not reflect what's happened in the 10 years since then particularly the HIT potential revolution and now even since then the reality that real money is going into this.
Based on an iterative process we prioritized to eight recommendations that you all felt were still the most relevant and had the most priority and would benefit from revisiting. We can send this out to you, but they were pretty broad, nonetheless, some of the broader ones rather than the more specific ones. Now they are doing literature reviews and these key informant interviews. I would say they are about a third of the way through those, but just encouragingly everybody who we asked to have such an interview or phone discussion with maybe one or two exceptions they all agreed almost by return mail. There was a lot of interest in this and a lot of -– some of them thought they were going to be talking to you, Bill, and Don since the letter came from the two of you. But even after they found out they weren't talking to the two of you they still agreed to participate it. And like Ed I think you are having your interview on Friday. They have already talked to David Blumenthal. They talked to Elliott Fisher. You know various people who have been at our hearings and whom we work with.
They are facilitators for us. This isn't something for them to publish on their own. What they will do in September is report to you on what they have heard and what they have found and what they think might be next steps to really to more fully update this vision. Now as Bill said the population subcommittee agreed to have some conference calls in probably August and September to help shape what they will bring forward then. But when the privacy has had calls I think we could definitely make these open to anybody on the committee who wants to participate.
MS. MCCALL: I am trying to get at what the intent of this subcommittee is. There has obviously been a lot of discussion and talk about the topic. Is the intent to publish a larger document under our name that's refreshed number one? Number two is it the intent and the desire on the part of the committee to have the members from the full committee not just a subcommittee be a part of that process?
DR. SCANLON: On the second one I think the answer is definitely yes. On the first one in terms of publishing a bigger document that remains to be determined because I think that we have to again maybe this is too much of a broken record. I think we have to be sensitive to resources and timing. There are more important shorter things to do than we may do them in the interim.
MS. MCCALL: So that's really exactly what I am trying to get at.
MS. GREENBERG: The document that we get in September I don't think we have an intention of publishing that or even probably sending it to anyone. I mean I think we can post it but it is really input to the committee. This segues really into the next -– the idea was to have something substantive in the way of an update or updated reflections on the report by the 60th anniversary celebration a year from now.
DR. SUAREZ: I mentioned this yesterday. We are about to embark on the largest healthcare reform in this country. We just are in the beginning of the biggest health information technology movement ever. We are about to start the second decade of the century. We are celebrating the 60th anniversary. All these things seem to me create the opportunity to not just revisit and do a quick evaluation of where we are with things on the shaping health statistics systems in the 21st century but it gives us maybe the opportunity to define the vision for the next 10 years as I mentioned yesterday. The 20/20 vision for the health statistics system in the country. So building this from the work that is being done between now and September and then from there expanding into the larger work that need to be done is what I hope will happen.
MS. GREENBERG: Well, I think Larry. I don't know if you want to comment here, but in the quality work subcommittee this morning you were commenting on some of the discussion yesterday in populations about the health statistics and the enterprise and the ability to improve that enterprise that I think would fall into here.
MR. REYNOLDS: Last comment and what I would like to say is this appears to be under the jurisdiction of your subcommittee, yours and Don's and working with Marjorie. However you can bring this group along on this journey so that we don't end up like our last discussion where it is a big enough subject if we are going to have to help educate the committee to get them to a point where everybody says yes this is a good idea then let's purposefully include that in whatever you doing whether it is calls, whether it is anything else so that we do move. That is a general recommendation I have for all the subcommittees going forward because I can tell you right now the next level of stuff that is going to come out on privacy is going to be the same way and some other things. As you say Walter there is a big change going on. Well, we can't act like we come to this room and people haven't been involved and we are going to assign a big change with one conversation. I think that is a good point. Leslie and then we will move onto our next agenda.
DR. FRANCIS: This is a fly on the wall observation from yesterday. Three was a comment made that there is no money for new methodologies.
MS. GREENBERG: That is what I was referring to.
DR. FRANCIS: And that just blew me away because it seems to me that if ever there were a time to think about leading out about some of the importance of new methodologies given new kinds of data it is right now. I would urge wherever you go with some of this to be thinking about having that on the table.
MR. REYNOLDS: Bill, let's move onto our next topic.
Agenda Item: NCHS/BSC Update – Vital Statistics
DR. SCANLON: Leslie and I arranged that perfect segue before because actually what I was thinking about doing here was trying to repeat what Ed Sondik said yesterday at our breakout session in terms of NCHS kind of the good news and Leslie just described some of the bad news about resources and where there are. Since Ed is here I don't want to fail the test and sort of missing out in terms of my memory of what he said. So maybe we could ask Ed to kind of give us an NCHS update. I think that would be the most useful use of this time today.
DR. SONDIK: I said yesterday I would do it briefly and of course as usual I didn't so briefly but I will try and do it briefly. A major issue for us has been budget and because of the efforts of lots of people including people in this room, this committee, the support from many, many places we received a budget increase for '09 and we are in the President's budget for '10 as well for a budget increase. This really saved us from having to continue with the draconian measures that we took. We cut the health interview survey in half. We were having great difficulty in paying for the vital statistics. We cut back our healthcare surveys and we were not investing in the future, which is perhaps the most important thing. Doing the kind of methods work, internal research we are doing a very small amount of it but nowhere near what we should be doing.
The budget increase for this year has enabled to bring back the health interview survey to a good level but not where we would like it and enabled us to not take actions that were going to take with the vital statistics to cut back on the amount of birth data that we were collecting that would in turn give us some money to invest in electronic systems and in quality control research and measures, but we don't have to do that. We're not going to do it and our plans are not to do that in '10 either that is to cut back but to collect the full range of data.
The increase in '10 will help us with personnel cost, the vital statistics and enable us to do several other things. One is increase the sample size of the HIS even higher up to its real design level. It is still not where I would like it to be but it is design level that gives us information on the diverse populations in the US. I said yesterday I don't like the term subpopulations because it seems to inherently to me seem to create priorities so maybe diverse populations. I am searching for a word but anyway the country continues to get more diverse and we need a better handle on this.
It has also become really clear that and this was brought up by – it's terrible. I am blanking from the name of the person I have known for 20 years from NCI who was there yesterday at the population – Nancy Green, right. Don't tell her I blanked. They actually have a project that they are doing in which they are looking at the varieties of more local and state data collection that are going on. They are not quite sure exactly what they are going to do with the results of it but I think it is going to be very informative. There is no question in my mind that the drive is toward more local and state data. That has been the cry that we don't have it and the drive is toward that and I think that is terrific, but the more we get of it the more we need a really solid benchmark to know how good that data actually is. I think that is a major role that NCHS we play it now and I think it will be an even stronger role in the future which is why I think in the future we need an even larger size for the health interview survey to give us those figures, those information on these diverse populations that then can be compared to what people are actually getting through phone surveys that get 30 percent response rates and that sort of thing at the local and the state level.
For '10 if we get it we will be I would say in pretty good shape with the vital statistics and I hope that we can pay for the majority of the year of data. Every year we don't pay for a full year it just means we start at the next fiscal year paying for data. We get further and further behind in actually paying for the data. These two years will really help us considerable, help us with the HIS. We won't make any major changes in NHANES but we will pay some sort of maintenance and trailer cost. The trailers are what we use to collect the data. I think most of you know there's a very large outfitted trailer trucks and we have quite a fleet of them, 12 of them plus a couple of spares in any case.
So budget wise we are doing okay but then the question came up well what are we doing. What are the major issues? I said the major issues are one we really have no extramural research program that enables us to do the methods development and the quality control research that we really should do. I think with a relatively small amount of money we could be giving grants to people who could work with us and I think that is the way to do it to couple that with our internal program. As the person who heads the internal program tells me I just don't have the money to do what we should be doing and part of that money would be directed through that program, but part would be really investigator initiated as well. So we don't have the money for that. We need to increase the sample size of the HIS and we could also stand to increase the sample sizes of the healthcare surveys.
In one thing I didn't mention that in '10 we will put back in the field or we will initiate a residential care survey. This is one of the frontier areas. Particularly a frontier area in that we have very little information on residential care and assisted living care. We are basically the agency that gets that. There is really no duplication here that I know of elsewhere in the federal government. We will continue our hospital discharge survey with an eye toward the redesign that we have already done but we still won't have the resources to actually put the redesign in the field and we want to make sure that this dovetails really well with what AHRQ does, A-H-R-Q.
So we need to increase the sample sizes of those surveys again to be able to give us the diversity of the populations. We also need to better secure the future of NHANES although thus far it looks it is in pretty good shape. It certainly could stand to be increased in sample size. Sample size continues to be actually quite small when you consider that it gives us information that is really unique in the Federal Government. I will just tell you what it is. The nutrition information that we have whether the US eats a healthy diet or a nonhealthy diet. That comes uniquely from NHANES. Information on the key cardiovascular risk factors and their control the solid information not the self-reported but the solid clinical information comes from NHANES and that reason it is solid is because it is a very precise representative sample of the US, but it is not as diverse as it should be. If we were able to increase the sample size, we would be able to do more and we are looking at more innovative ways of doing that not simply replicating the whole survey but considering how we can add pieces to it that would target particular populations.
MR. REYNOLDS: Carol, do you have a question?
MS. MCCALL: No, not a question. It was more kind of a –
MR. REYNOLDS: You have the floor.
MS. MCCALL: It reminds me of listening to your comments of essentially the informatics equivalent of Chuck yesterday because what I can imagine is that there is both a need and an opportunity beyond methods research to put smaller groups on the ground. Think about everything that is needed in terms of new sources of data that you talked about that are locally relevant. They are much more diverse. They go beyond healthcare and into health. The training and use issues of the informatics that is out there today, what's actually happening in universities, how do you actually train people, let's not forget data stewardship and all of that, but also those might be the vehicles through which you begin to talk about similar instruments. They would be similar in that there would be continuity across different regions or local areas so they can tie together, but there might be uniquenesses that you can then begin to represent and create kind of a cycle feedback and innovation that you can do and those are the types of things because this is about money. That is how we go there. Is there a way to ask for money that begins to anticipate the statistical enterprise of the 21st century that is fractal? It's got national. It's got regional. It's got local. I don't know how Chuck got his money, but where is this stuff for the meaningful measurement side?
DR. SONDIK: Health reform I think is critical to this. There seems to be complete agreement on both sides of the aisle and certainly within the administration itself that adequate information is crucial to monitoring and evaluating this. One thing that I didn't say that I want to emphasize is that if our highest priority in this or certainly we have none higher is to build a vital statistics system that is 21st century. A lot of it is not. This is a partnership with Nafsis(?) and the registrars. WE were in one of the stimulus bills for $40 million to do that and for reasons I don't understand. It came out and it doesn't seem to fit any of the pots of money but as I said to the committee yesterday we are working on it. But I can't say that I am particularly optimistic at this point.
MR. REYNOLDS: Carol, follow up and the Mark.
MS. MCCALL: What it does for me this helps me understand maybe some of our relative priorities about 21st century and what we might do with that. I would want to do more rather than less right now and the other is around meaningful measurement if that becomes a companion to meaningful use, measurement will end up being the key. It is not clear to me that we have articulated the necessary – okay so what does it mean to actually make that happen? All of the necessary elements. People go well of course we want it to be valuable but we haven't said what that is going to require which means that chances of getting there is not very good.
DR. HORNBROOK: Two points. One on the vital statistics system. There is a table inside epic and I am sure every other electronic medical record system which links mothers and babies. Right now the vital statistics system sort of waits until everything is all done before they send the data up and there is a different kind of informatics modeling theory which says that as soon as you know something we send it electronically. So as soon as the baby is born and linked to the mom you have that record sent to you electronically and you know there should be a birth certificate some time coming. As long as you are sending that you can also say something about the baby and something about the mother because it is already there in the chart.
Then on another whole different matter is I know that the primary culture of NCHS is extremely high-quality data from original sources the best you can get. The culture of NCHS right now is very high-quality data from primary original sources and yet the whole economic enterprise in this country works off of a lot of secondary data and there is a possibility of doing health statistics from inferential sources in terms of people's web browser patterns. I am sure there are lots of reasons why people buy web data or their own marketing purposes. In this case we are marketing the national health system. I didn't know whether anybody had ever thought about how to do the surveillance using inferential and non-obvious sources for NCHS.
DR. SONDIK: We would love to pursue that. It would require staff. It would require some money and it would require extramural partners. We would love to do it but it is extremely important that there be -– and this is true for the economic data as well. There needs to be a set of standards and I mean standards in the sense of the atomic clock or whatever. There is something there that is the benchmark and you can go back to that. My view is that you should look at the quality of the data that you need in terms of the sensitivity of the decisions that you have to make to that data. I think people buy that, but at the same time that is a hard thing to actually implement. We need more information really on how to use the data. That is why I don't want to go back to the stewardship document, but that notion of use is in there. I think we need more research on the kind of data that we need for the uses that we have. If in a community, for example, periodically you get really solid data and you can use a variety of other kinds of information over time to make decisions knowing that sometime down the line you are going to get another really solid benchmark.
MR. REYNOLDS: Bill, back to you.
DR. SCANLON: This will be quick and actually could substitute for the populations subcommittee report later because it is the second half of the populations subcommittee theme. It is this whole issue of resources. When we had done the letter back in February in terms of the stimulus monies and we also had a second letter that Walter had drafted in terms of broader perspectives and final resources for the statistical enterprise. Given what has happened since then we decided not to pursue that letter yesterday but to think about the changes that have happened with respect to the 2009 appropriation and the 2010 budget. Considering for September a letter that in essence might say thank you very much. This is a very positive thing to have this investment. It is very important to continue this kind of investment because in September the department will be thinking about the 2011 budget and also point the fact that even greater investments will have significant payoffs. That is another thing that the populations subcommittee is planning on working on this summer so that we can be prepared when we come back in September.
MR. REYNOLDS: Marjorie. Let's go on to the celebration.
Agenda Item: NCVHS 60th Anniversary
MS. GREENBERG: Okay. Are we ready for that? Debbie as well. I will just give you a broad overview and then Debbie is going to tell you specifically about what we are planning in Charlottesville, Virginia on the 24th and the 25th of September. We have already as you know launched the 60th anniversary as a series of events, small ones so far but I did the poster, which you may recall for the WHO meeting last October. We had the lecture yesterday from Lisa Iezzoni on -– status and revisiting of that report that the committee had done and we did it in conjunction with something that we have called ICF week. We have actually had web seminars Tuesday. Today there will be another one 1:30 to 3. Any of you who are interested actually it is going to be upstairs. There will be a third one tomorrow. Those are all being delivered by my colleague John Huff. We had a hundred people participate in the first one and in addition to whoever listened on the web on the VA site yesterday to Lisa's presentation we had about 50 people listening on the GoToMeeting as well.
These are individual events, but now we are having to get real. We are working with on this 21st century vision for health statistics. We don't know exactly what we will have available for the roll out a year from now. We hope to at least to have some kind of draft report and that is what we did for the 50th. We rolled out some kind of preliminary reports, but that is certainly a big piece of our 21st century vision update is part of the 60th anniversary.
PARTICIPANT: Sorry for interrupting. In this vision have you explicitly like we have already for the comparative effectiveness eliminated health utility from any of the framework?
MS. GREENBERG: Nothing is off the ground and nothing is off the table at all.
PARTICIPANT: Europe and Canada have already strongly adopted health utility measures using societal preference weights and nothing from Lisa added any utility weights into the ICF yet and I was thinking and if we are thinking of the 21st century vision and we are going to think about how to allocate resources to the most health problems having some kind of health utility weights to help us guide that would be very critical at least for health economists anyway.
MS. GREENBERG: I know that the center has had a few workshops around that topic. It relates kind of doesn't it to the DALYs and all that. I don't know if you want to say anything about that, Ed. That certainly could be an area for a future hearing or workshop. I don't know whether anyone in these key informant interviews will mention that, but you all are also key informants. You are a member of the subcommittee populations subcommittee, right? So that's where I would suggest introducing that. Do you want to say anything about that Ed?
DR. SONDIK: No, I think it would be very good to discuss it. We have every opportunity to be actually collecting this information. AHRQ collects this information. I say always spell it out because there is a CDC component that has no relationship to the other. The maps collect this information and we could do that as well in HIS. There are issues in terms of actually how it gets used. There is a sort of fundamental question of do we want to build an overall health index and that is controversy to whether anybody wants to do that, but in terms of getting preferences it is something that one can do. There are some who are more skeptical than others about how useful that actually is in terms of priorities, but that is why it would really be good to bring it up with the subcommittee and actually it could be a topic for a hearing as well because there is a great deal of interest in this in the world, but it is still highly debatable.
MS. GREENBERG: I know there are ethical issues and everything else, but we won't go into that now. Nothing is off the table. After I give you all of these things then I'm going to give this to Debbie to talk about Charlottesville.
In September the two days after or a day and a half after the full committee meeting we are convening the chairs of the former chairs of the committee whom we have contact with going back to Carl White who was Dr. Carl White who was chair in the ‘70s and then Ron Blankenbaker who was the chair in the ‘80s and everybody since then including yours truly here on my right. So far we have them all coming. Simon Cone, John Lumpkin, Don Detmer, Judy Miller-Jones. We hope to be convening them all in Charlottesville. We are doing this in Charlottesville because for a few reasons but two of them are there of course. Don Detmer and Carl White but Carl White is vigorous and in his 90s and we thought that we should go there to him rather than ask him to travel to us. Debbie will tell you more about that. Susan Kanaan is going to be part of that picture. We are going to do some oral histories and discussion et cetera. That will also be something. We will have videotaping that will be available. There will be a document coming out of that that will also be available by the 60th actual celebration a year from now.
We also are doing a 10-year update to the 50-year history rather than doing a 60-year history. A 50-year history we feel is very good solid document and we will do a 10-year update which will pick up on everything in the committee not just the health statistics vision but certainly a big emphasis will be HIT and how that has come on to the scene of our work. Susan Kanaan is doing that. That is in lieu of by the way an annual report. We haven't done an annual report for a few years. Instead it is all going to be captured in this 10-year update.
I had suggested that individuals around the table in addition to myself. I have tried that you can see inserted into various activities of my office, but might want to piggyback on the 60th anniversary and Judy, it seemed you said you were going to do something.
DR. WARREN: Yes. So I have been looking for a venue to submit because we were going to do this in 2010 to do the presentation.
MS. GREENBERG: In 2010 the national committee, I mean the National Center will have its data users conference. It is a data users conference. I see a session there, which would be after -– that would probably I think it is July or maybe it is August. Ed, do you know? We are planning to have one in 2010.
DR. SONDIK: You know I really don't know --
MS. GREENBERG: I know we are planning on it.
DR. SONDIK: No, we are. I think it is August.
MS. GREENBERG: There are those opportunities. Is there anybody else who has seen through their professional associations or anything that they might be able to do something?
DR. SUAREZ: There are several. I will bring up JPHIT again the Joint Public Health Informatics staff for us, which involves seven of the largest public health organizations. All of them have their annual meetings. It could be a great opportunity to bring them. So if you give me something we can take it to JFED and –
MS. GREENBERG: Well, we can talk to you about that offline also. I mean certainly anybody can use this poster also if they want to.
Then we have the 60th celebration that is going to be at the National Academy of Sciences where the 50th was. Although that was downtown where the Einstein statue is or sculpture. That building is under renovation so this is going to be at the Connecticut Avenue near Georgetown. You know that facility, Ed?
DR. SONDIK: Yes. They still have it?
MS. GREENBERG: Yes.
DR. SONDIK: I didn't realize that. I thought they closed that when they opened the other one near the building museum.
PARTICIPANT: It is at 5th and F. It is across from the Pension Building.
MS. GREENBERG: Oh, is that where it is going to be? I am really confused.
DR. SONDIK: I really thought they closed the other one.
MS. GREENBERG: Wherever this building is they have agreed to hold it.
MR. REYNOLDS: We can work that out.
MS. GREENBERG: We can work that out. We will invite all the former members. We will certainly bring in the former chairs. It is going to be -– do you have the dates?
MS. JACKSON: The second day of the full committee meeting, June 17th, 2010.
MS. GREENBERG: For the June NCVHS meeting what we will do is we will meet on the 16th and -– then probably the morning of the 17th until 11 or something and then we will all adjourn or progress to wherever this building is and have a celebration at the Institute of Medicine or at the National Academy of Sciences which will have about a 2-hour probably or 2 to 3-hour seminar and then refreshments actually which is unusual, a reception in which the 50th Secretary Shalayla actually came. So we will certainly invite Secretary Sebelius. Give us your suggestions about people whom we should invite in addition to the usual suspects.
We really have to get serious as I said about what we are going to do with that let's three-hour period. We know we are going to have something from the 21st century vision. When Debbie and I were knocking this around, Debbie said and I just said yes. She said shouldn't we have something whether it is a roundtable discussion even if there isn't a committee document at that point around what we have graced as our theme which is person-centered health. So I think, yes, but I am only one voice here. You are the ones who said you raised the theme of person-centered health. It doesn't have to be a document. It could be as I said a roundtable of discussion. This morning the quality subcommittee was talking about some hearings and some areas that you all want to go in that I thought could be appropriate to preview or roll out.
MR. REYNOLDS: For September why don't we have subcommittees come back with suggestions.
DR. FRANCIS: I have a slightly off the wall suggestion on this. Most people think that statistics are nasty and dry. So what does statistics have to do with improving my health? So if you were going to do person-centered health and do it at NCVHS twist, wouldn't it be how are all the population health, vital statistics, and all the kinds of things that NCVHS has been famous for 60 years. How do those make a difference to the individual health of people?
MR. REYNOLDS: Okay, Bill, you've got that. Your subcommittee will answer that.
MS. GREENBERG: I think this executive subcommittee will have a conference – but we really have to decide in September what we are planning for that. It is going to be a high visibility effect. As Harry said and I certainly agree, every subcommittee should be thinking about something that they could bring forward and we will have to decide. So I'm just going to ask Debbie to say a few words about Charlottesville.
MS. JACKSON: The confluence of themes and topics that we have been talking about you have been talking about over the last couple of days and this morning is just really pull together that we can include into this. The people moving aspect of Charlottesville is that the chairs will be coming in that afternoon the second day of our meeting and then that first morning, that Thursday morning they will have individual sessions. As you have heard already heard from Susan Kanaan's great work, which she can do in pulling out topics and issues, is amazing. Individually the chairs will get a chance to give their insights and views on a number of topics. We will script that. That afternoon we will have a roundtable. We will all get together. The chairs will get together and then again that will be scripted but they will get a chance to bring out a lot of the issues. In fact as Marjorie mentioned some of the topics that are coming up from the interviews from the populations as well the 21st century. It is an amazing time to get this kind of brainstorming and norming together and Friday morning more individual interviews and all this will be videotaped to be packaged and pulled together for the next year of celebration then that Friday afternoon we are out. So that is the people moving us.
MS. GREENBERG: And a dinner actually honoring and recognizing these former chairs and chair.
MS. JACKSON: Anyone is invited to participate. Drive down on your own I think you mentioned, Marjorie.
MS. GREENBERG: We obviously can't bring the whole committee there. We would not turn you away if you showed up. Like we were talking to Walter. He lives an hour or two from Charlottesville. So anyway if you want to participate. Larry is coming because we are doing this in conjunction with the Department of Family Medicine at UVA where Carl White has a library and is an important mentor and person there. That is another reason we are doing it down there. I think that is about it.
What we want to get out of these individual interviews are all histories and then the discussion is some history, some perspectives of each of the chairs as to really the role of a national advisory committee like NCVHS, its longevity, its strengths, its whatever, and we also want them to be because they are thought leaders and they continue to be looking forward as to what is in the future here in national health information policy. Any suggestions? We will also be working with the population subcommittee on the questions for the interviews and for the roundtable discussion. Any suggestions as to how we can make all of these different events more meaningful, productive include your input are welcome.
Agenda Item: Follow-up to Subcommittee Directions – Next Steps Closing Comments
MR. REYNOLDS: Thank you. Moving into our next item, which is to hear from the subcommittees, but again another theme what a time to make a difference. As you think about what you are going to say and as you update what is going on in your subcommittees, this is a prime time to be in the game. Let's make sure that we really do look at this from that standpoint. So Bill, you have given yours more or less, right? Justine.
DR. CARR: We are not quite ready to make a difference just yet, but we will be. Our initial intent had been to hold a hearing about meaningful use, but obviously that was preempted by a larger body. Today we spent time talking about kind of the continuum of care and the role of HIT in this evolving landscape. Starting with simply the understanding that we want a care delivery system from competent clinicians and then enter HIT we have a couple of roles. One is a facilitator of care delivery of population care and of prevention. We also have the role of HIT as a facilitator of measurement of care. We discussed that measures of care need to be on care delivery outcomes as we heard yesterday also on preventive measures, also on the continuity of care. We believe that there are gaps and we are not sure. One concern we have would be the raising of the gaps where we are not looking that we should be looking. Are we looking at it and getting outcomes in addition to the process measures?
A second area is measures of physician competence. Larry brought this forward. Maintenance of physician certification, which is under the purview of American Board of Internal Medicine. But I think a very key issue that continued to come up throughout our discussion was that HIT as a facilitator is only as effective as the implementation and not just the implementation of the HIT and the software, but in fact the redesign of workflow and the redesign and reconfiguration of culture, which is critical. The goal of course is improved care for better health for persons and populations and key to this in keeping to our goal is the person's experience of care.
I think in summary we have a number of opportunities and we have not yet decided where we need to go and those opportunities would be quality measures of care of clinicians. Another would be the implementation of HIT and what is needed there and redesign of workflow and culture. We recognize that there are a number of things that are becoming more defined in the next few weeks so we are looking to see what the committees under ONC are coming forward with.
We also raised the issue –- you know over the years we have been a part of populations then we have been separate from populations and we feel once again that three is a lot of resonance in the two agendas and so we would like to ask perhaps that we might have an executive subcommittee call where we can reconcile PHRs being another issue area that we have a call and maybe coordinate where we go from here.
I think the other thing I would just like to add is sort of the checklist of things in trying to put together of criteria for deciding on hearings or areas of focus. We have about 12 things, but paying attention to who is the audience. Is there an engaged customer? Is the project consistent with the charge? Is it data related? Is it relevant to current issues? Is it non-duplicative of other efforts either within the committee or outside? Is it complementary to ongoing issues? Does it anticipate dynamic healthcare, the dynamics, and the dynamic nature of healthcare reform? Can the deliverable be achieved in a timely fashion? Does it align with the skill of the subcommittee and committee and is it in an area mandated by regulations?
But I put those forward just because we have a lot of good ideas but in some cases it might be duplicative or it might be out of our skill set.
MR. REYNOLDS: Any questions?
DR. SUAREZ: Where do you see comparative effectiveness play a role into this approach? In other words is there an opportunity for the committee to consider looking at the whole issue of comparative effectiveness now that we are about to begin bounce into something so sensitive?
DR. CARR: Well, would we be duplicative of other initiatives in comparable effectiveness? Is there a gap that we can bring to light? Is there something that we can do knowing that we have maybe three or four days maximum of hearings that can give a timely value added input?
DR. SUAREZ: My sense is there is no committee working on this. There are the three agencies: AHRQ, NIH, and I suppose the other one. They are the ones that receive each one about $300 million or so to invest in comparable effectiveness. My thought was there could be an opportunity to give some advice or some -– I don't know what to call it. I don't want to use the word recommendation -– to frame the whole concept around comparative effectiveness so that investment of NIH and AHRQ and others are going to make have some sort of a framework for that.
MR. REYNOLDS: Mark.
DR. HORNBROOK: As we look at health reform in the case of all of our huge deficit, the way to pay for it seems to be on the one hand a one and a half percent real growth every year for the indefinite future and/or cost containment in healthcare. I look around from a perspective of a healthcare system which has always cost conscious and see the biases in the disease associations, American Cancer Society, American Heart Association who are always pushing the frontier of new technologies earlier than our physicians are comfortable with and even the National Comprehensive Cancer Network their recommendations, their guidelines are much more expensive than what our oncologists generally practice. Inside of our medical industrial complex is a whole set fee for service driven standards that have implicit untested as yet cost inflation that their bear to effectiveness agenda is really supposed to be targeted at and so the success of comparative effectiveness agenda is what we are really get to the point of extinguishing things that are over promising and extinguishing things that we should have gotten rid of years ago because they don't do anything.
MR. REYNOLDS: Leslie.
DR. FRANCIS: I just wanted to say that we are going to have a brief summary of what transpired at the PHR hearings and that will be available, Justine. We're not going to be doing any kind of work on the relation between PHRs and quality but certainly we will make sure that what happened in our hearings you can use and quickly.
MR. REYNOLDS: Anything else on quality? There will be no action item that we would have to take up in the September meeting from quality, is that correct? No letter I mean.
MS. GREENBERG: But you are thinking of using the day before the full committee meeting for a hearing.
DR. CARR: Yes.
MR. REYNOLDS: That's fine. Larry.
DR. GREEN: One comment from our meeting and I lean on both Justine and Bill to correct this. This is partly in response to Walter's comments a moment ago. I think it is very important that we focus on what this committee particularly needs to be doing as opposed to others, national quality forum like people that are doing other stuff. I would challenge the whole committee to hold the quality subcommittee responsibility for finding that sweet spot where we are doing the work that we are best suited to do that is non-redundant –
MR. REYNOLDS: That challenge rings clear for all subcommittees. I will amend your comment and then I can use it too. So everybody needs to do the same thing. Jeff and Judy.
DR. WARREN: Our subcommittee met yesterday and we are still –- I like the opening lines that Justine gave. We are not ready to make a difference yet. Because of the meaningful use hearings are really kind of going back and relooking at what our tasks are with that and also with the two new FACA committees trying to look at where our standards are. We had quite a good meeting in doing some brainstorming of where we need to be doing things next. We will probably have a conference call sometime within the next month or so to really hone that down. We have come up with one thing that we did overlook and we are going to be going back and try to fill that in. We are required by the HIPAA legislation to an annual report on implementation of HIPAA. We did not do that report for 2008 so we are going to be looking at coming in and doing that report again.
We also had a request from Karen Trudel to really take a look at things that are happening with the implementation of ICD-10. She had several ideas of things that we could do to help them with that initiative and so that is also on our list to begin to consider. That is kind of where we are with our report.
We may have something in September but I don't know today whether or not we will.
MR. REYNOLDS: John and Leslie.
MR. HOUSTON: I think we gave much of our update yesterday. Again, just to remind in terms of I guess upcoming for September and shortly thereafter we clearly need to get something out the door late fall so we are going to try to have something together in some form for committee consideration. If nothing else the principles that we put into a letter. Hopefully we will have more than that in place.
Again, I think to Leslie's point as well which is we are going to be having a series of conference calls throughout the summer. We want to actively engage those individuals who have an opinion or desire to engage on this. I know we talked to Blackford about his involvement.
DR. FRANCIS: Carol.
MR. HOUSTON: Carol. That's right. Yes, I think September we are going to have something that we want to tee up for some substantial dialogue and discussion.
DR. FRANCIS: I would also add that this might be just the one to try out some of the new technological opportunities for communication since John and I and Blackford are all on the –-
MR. REYNOLDS: We will either try out something new or use the heck out of the old stuff because this one will take your involvement and maybe John is a little bit, but every time we have brought anything related to privacy in here in the five years that I have been here if you don't think you have an opinion you will the day we show up with documents. I would recommend to you that you might want to go ahead and buy in yourself. It is something that immediately –- it is the hardest issue that we face that you can't step away from it personally because we are citizens of the United States and when you hear about privacy it does jump in your personal face and then you will have an opinion and we have to help everybody to deal with that.
MS. GREENBERG: Since we are talking privacy, I know you have all seen this report. We are sending as I said to the entire mailing list. I particularly want to thank Debbie Jackson who I think the report is just beautiful and she did a lot of work. Susan Kanaan also assisted. The privacy subcommittee. I think, Leslie, you were the point person working here with our publications group. You see a nice report like this. It is sort of like sausage. You don't want to know how it all came to be, but I think it came out beautifully so I am very pleased and I thank Debbie and Leslie.
DR. FRANCIS: I want to echo that and just say I was thinking of the report as going to things ahead and I apologize for not having – I hope you all will take copies of it and distribute it widely because it is –
MS. GREENBERG: If you have a group that you want us to send copies to are not currently on our mailing list or you want 10 or something to distribute, just let Debbie know.
DR. SUAREZ: Again, I think this is a great opportunity to have something some standard email message that the chair can put together that we can just send out for distributing. We – not create our own little message saying hey here is a – just a suggestion.
MS. GREENBERG: We have a cover letter we can –
DR. SUAREZ: -- have that in the email and then we can –
MS. JACKSON: This is hot off the press. We haven't even gotten it out to the department. We are getting that downtown and then we will get all the –
DR. SUAREZ: Is there a PDF file –
MS. JACKSON: Yes, but I'm not forwarding anything until I get it downtown.
MR. REYNOLDS: Anybody else have any comments on any of the items?
MR. BLAIR: One of the things that I would say is Harry has encouraged us to reach forward and make a difference and it is actually consistent with the fact that NCVHS over the years has a history of making a difference and it is carrying forward that legacy, that history. I was wondering in some of these documents that we are talking about where we would be looking for and maybe a theme with respect at NCVHS. Harry, we might consider using that as a theme that if we look at the last 60 years of NCVHS we have made a difference and we can articulate how we have over the years.
MS. GREENBERG: That is actually I think the title of my poster. NCVHS 60 years making a difference.
MR. BLAIR: Seat telepathy does work.
MR. REYNOLDS: Walter.
DR. SUAREZ: For the next 60 years. I think it will be great to begin to think. Each of the subcommittees is now looking at what are the immediate priorities. Wouldn't it be good to have some sort of a vision of the committee's next set of visionary activities, if you will? At some point bringing us together to talk about besides the work that is being done immediately, what are some of the next year, next five years kind of priorities or areas to focus on. In light of all the things that are happening and this community being created finding the right message to tell people. Everybody is asking about what is going to happen with NHIC. What is going to happen with this group compared to this group? What is it that you are going to do with all these questions that people have in mind? It will be nice to have a common message but also sort of a message of the next set of activities that the committee will be doing set of priorities and put it in the perspective of this is a 60-year-old committee. It wasn't created by the recovery act or by this or just last year or something like that. Would there be an opportunity to do something like that in the year?
MR. REYNOLDS: I don't think there is any question. You can do that through a planning session or again I continue to challenge the subcommittees. You are the experts in those environments. I, as the chair, would much rather take input from the subcommittees because you spend more time together, you think about than us putting together some kind of executive subcommittee planning session and then telling the subcommittees what to do. Until we hear different right now one of our focus has been person-centered health. That is what we all agreed to. Now have we all executed against them and are we still using it as a guiding light? Not necessarily.
Again, I also say to each of you who are each of you are leaders in the industry in one way or the other including the staff. That if you have suggestions then please submit them. I think number one I'm sure not going to picking them myself. We are a very collaborative group. Somebody wants to start that discussion. Somebody wants to say whether or not continuing person centered is the right thing or not to do. Please put it on the table. Don't assume there is some kind of magic structure that allows you to share your voice. There is not. The subcommittees I really expect and those of us that have participated in subcommittees when we are in the room I heard a little bit of the end of the quality one. We play hard. You hear the enthusiasm. Well, I want that same enthusiasm rolled up here if you think we should be grouping up on things and do that. Not necessarily wait for certain subset of us to come up with what these answers are.
DR. SUAREZ: Quick follow up. Yes, I mean sending suggestions to someone. That is good. That is a good start. I am really talking about not just sending a series of suggestions so some people can think about it. I am really thinking about –- as an organization every year when I used to direct a non-profit every year I would have to come up with a two-year plan that my board would look into. I still have to do the work that had to be done during the year but still have the two-year plan. Because of budget purposes there are all sorts of things. It is sort of like keeping that not just an accumulated set of lists of suggestions of people saying but it is sort of every year having some devoted time at some point to think of a little bit longer than just the next six months or the next year more into the next two years and five years or something like that.
MR. REYNOLDS: Well, I'll hearken back. All of us run those things at work. I am very comfortable doing that in my day job. This is a consensus-based organization of stars. What I am saying is I could sit down and write something right now. I have personal feelings about exactly what is going on out there. But what I am saying is that the subcommittees are our power, not sitting down and coming up with -– so each of you ought to be answering the same question. We roll it up and we see how we go as a group because that is where I am going. Understand I have no problem whatsoever coming up with thoughts of that and getting the executive subcommittee together. We have done that but things have changed so much now. A good example is I know that each of you are struggling how to make a difference out of your committees. I am not sure we group up a three or four us and we group up and we write something down and say okay your attention please, here we go. I understand. I am not shirking the task but there is a lot of power around this room and there is a lot of thinking around this room and there is a lot of capability around this room and so give it up as the kids say now.
MS. GREENBERG: I think right now there is a lot of uncertainty. I think the way every one is trying to figure out how each subcommittee can make a difference is good. I was just looking that we had a full committee retreat and I was trying to think was it 2007 or 2008. It turns out it was 2006, three years ago. It is something we could think about in 2010. Let's just chew that over.
MR. REYNOLDS: I think that is great.
MR. FERRER: Harry, could I make a small observation. I think to Walter's point I think the subcommittees are still struggling a little bit with this new transition of phase. How long are we going to be in it? This formalization of our committees and actually are going to be doing a good bit of the work that this committee has done. –- is a perfect idea. They are about to begin three subgroups with – so Jeff and Judy have got to be close in mind with the work they are producing and evolving. They are having their meetings, but it is still a little unclear, for example, how do Jeff and Judy have any interaction in that type of -–
MR. REYNOLDS: As I mentioned yesterday I can promise that minimally at least Jim Scanlon, David Blumenthal, and I have to work on that. I mentioned Marjorie yesterday. The point is that I will be sending to Jim every opportunity I am when I am in Washington and we are going to try to get together. I sent David Blumenthal a number of emails. We will get together and we will work on how this works. But I would say this to you. If you listen to everybody's charge, they are in charge of implementing and putting the things in place to implement. There are a lot of things we talked about here that are not anywhere near their list, are not anywhere near what they are going to try to do, and Walter was talking about a two-year goal. I would love to see a goal of 2015 because there is a whole lot of change that has to go on in this industry between now and 2015 and there is a lot of money going to be bouncing around related to it and there is a lot of change. So if half of this change happens we ought to have plenty of space to be talking about things that are going on or not going on and especially in areas where they are not even thinking about right now because that's not their charge.
They have a very clear and precise -– if you read it, they have a very, very clear and precise charge. I don't want to over blow that we are worried about getting in their way. There is one clear, very clear one. We were talking about and I don't want to say this just to get this on the record. We stopped the standards hearing last time because we needed to make a difference. That is the whole reason we did it right then, right there. We had people scheduled. We had everything set. Boom. We did that.
We also had a subject that was under and here was the subject. What is the right way to do standards? Now, we were working that with a customer called ONC. There are now very few of those bodies playing in that game at ONC. We had a customer. We had a partner. Excuse me. Let me say it differently. We had a partner and we were marching with that partner to talk about what's the right way to do these things between now and then. Now all of a sudden they have a standard subcommittee. You got to step back a minute and go time out because the minute that we would continue hearings philosophically and talk about let's change the way we do standards and they are going out and saying that is the way we are picking standards. Whoa, got to call time out on some of this. So that is why we had such a precise and energetic discussion yesterday, but there are plenty of things that we can do. I am not at all fearful of what they are doing. I am not at all fearful of the fact we are all in the same department as the chair of this committee. I'm not worried about that. I am worried that we make a difference. Both of us doing it at the same time one or two different ways we don't buy them much.
MR. BLAIR: Not only do I feel the way Harry does about this, but you know maybe I have been around long enough that I can sort of see history and evolution and we were struggling for quite some while to try move things forward with health information technologies in particular the standards and security subcommittee as it was called then and we wound up coming up with a proposal for the National Health Information Infrastructure proposing that ONC be created and it was. We have made a number of other proposals in terms of foundations and message format standards, terminology standards, how these things would work forward as well as the HIPAA pieces. In a lot of ways Congress in enacting creating these two committees, the HIT policy committee and HIT standards committee, building on the foundation that this committee has laid and it didn't just lay it in terms of concepts. It laid it in terms of recommendations.
Now that a lot of the concepts and standards and frameworks and policies were laid down we're not moving into high gear in the country in terms of healthcare reform. As we move into high gear, it is more than with the National Committee on Vital and Health Statistics can do by ourselves. I don't look at those two new FACA committees as being competitive or taking away from what we have done. We need them to be able to move the country faster. We still have the same mandate that we always had.
I think that we still have opportunities to blaze new trails and see things out 5, 10 years and start to lay those frameworks too, but in addition in our meeting yesterday we still have customers coming to us saying that they need help with particular standards that are coming down the track in the next three to four, five years. So I would say that we have more on our plate than we could handle and we need to intelligently decide which activities we commit to.
MR. REYNOLDS: I want as many suggestions. I want directions. I want structure and we will sit down and help understand if that appears anybody that we are going to get in anybody's way, but I would say probably 9 out of 10 that we are not. We are not going to be so let's go. Last comment and we will adjourn. But Jorge exactly right. We got to keep playing hard. Let's don't assume there are ghosts out there to play through.
DR. WARREN: One of the things that I did yesterday was have a conversation with Marc Overhage who is on our standards subcommittee. He is also a member of the HIT standards committee and asked him how we could start collaborating and knowing what goes where. We agree to have those conversations although I will say at this point Marc doesn't know where that line is or anything else because they have had one meeting. They organized themselves. They have not talked about content or projects yet, which will be at their next meeting. We will continue to have that kind of dialogue. I thought that was very fortuitous that Marc was appointed to the committee and allowed us to have collaboration. I think we need to remember that Paul Tang was appointed to the policy committee and then figure out how he allies with this committee so that we do have these collaborations going.
MR. REYNOLDS: Very few terms we overlap in my opinion. Thank you very much. I appreciate everybody, your energy. Let us know in between meetings if you got any issues you want to deal with and let's go make a difference. Thanks.
(Whereupon, at 12:50 p.m, the meeting was adjourned.)