[This Transcript is Unedited]
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS
Workgroup on National Health Information Infrastructure
February 22, 2006
Hubert H. Humphrey Building
Room 705A
200 Independence Avenue, SW
Washington, D.C.
Proceedings by:
CASET Associates, Ltd.
10201 Lee Highway, Suite 180
Fairfax, Virginia 22030
(703) 352-0091
P R O C E E D I N G S [5:13 p.m.]
DR. COHN: I want to thank you all for sticking around, I know there’s like starting early morning and continuing on until 6:00, 7:00, 8:00 at night. It has been suggested that we start doing other times for our NHII Workgroup meetings and I actually have to say that yes, the answer is yes. We’re dedicated but I don’t think people do their best work after six, seven, eight hours of continuous meetings —
DR. DEERING: We want you when you’re fresh, Simon.
DR. COHN: I’m always fresh. But having said that, and obviously we’re trying to make some progress today, some of this may have to be handled by conference calls and all of that, but there’s sort of two things we wanted to talk about today. One was to sort of find out what the status of the PHR report, it’s really turned into a report, I’ll let Mary Jo do that very briefly. And then really the main meat of it is now that we have obviously finished up that report, which we did in September and took a deep breath or two, the question is looking at various items and figuring out what we want to do next with the idea being that we may want to set up a hearing either for a day or a day and a half sometime between now and the next subcommittee meeting, sorry, full committee meeting, even including potentially the day before the full committee meeting though that may once again be another four day meeting if we don’t watch out. But those are sort of the options that we’re sort of considering.
Before we get into sort of the types of things that we may want to go on to next to get everybody’s input, I wanted to let Mary Jo just talk a little bit about where the report is at this point.
DR. DEERING: Well it may be just about on its way to the printers, I don’t want to put Debbie on the spot, I had thought I might even see a projected production date but this is a truly collaborative arrangement between CDC, NCHS and the National Center Institute which is actually bankrolling for it but for some reason was not allowed to print it, so NCHS will print it and all of the procedures have been done and so I will email you its projected arrival date. And if some of you would like multiple copies let me know, it will look very nice, Susan did a really good job in some light edits and some pulled quotes and the graphics are going to be very nice, it definitely looks like a sibling to the Information For Health Report, so I think you’ll be very pleased with it.
MR. BLAIR: About how big is the document now?
DR. DEERING: Well, again, in terms of the formatting I think it comes in at still under 50 pages but there’s a lot more white spaces and pulled quotes and things like that in it.
DR. COHN: Part of communication planning, Mary Jo, thank you very much, we obviously look forward to seeing all of that. I think from my view it was a very well received report and I think it has been extensively referenced, and I think people have found it very enlightened, which we say for especially short reports, that of course short reports are the only ones anybody reads anymore, so that’s probably what was good there.
Now let’s talk about potential topics and sort of issues that we may want to work on, at least for the next hearing and maybe potentially in the next year. Jeff, did you have a comment about topics? I was going to go through this page and then Jeff, I’ll let you add, there’s not anything here now.
This is somewhat of a complex list and I will try to sort of simplify it into three sort of broad categories. I mean one has to do with issues related to what sort of further work may we, should we do around personal health records or the personal health dimension. And what Mary Jo did was she abstracted these first eight bullets, seven bullets, on the page here, are basically issues that were sort of left open from our letter report, so that’s what those are all about.
And then the second bullet under other potential topics has to do with other PHR issues and specifically one of the things that Mary Jo and I were talking about last night was if nothing else maybe a hearing knowing that there’s standards work, actually what it is, what is the bullet here, there’s work going on by the payers, in particular AHIT, around doing PHRs and certainly if we’re off in that area it would make sense probably to hear what they’re doing since there’s some apparent presumption of some sort of standards activity and other activity going on. So that was really I think what that next bullet was, obviously policy issues related to CMS provisions of Medicare/Medicaid claims data, we probably ought to look at that RFI response first to find out if that’s really been addressed or whether there’s something more about that, that’d be more like next steps around all of that. So that’s one sort of broad category of issues.
Now the first bullet under other potential topics is actually from a conversation that Paul Tang and I had, I was beginning to call people up and I don’t think I made it very far to everybody on the list but Paul and I were talking about what should the workgroup do next, what are things that are appropriate within our scope of the NHII. And I think as we began to talk about the world of NHINs and RHIOs and all sorts of health information exchange the question was should we begin to start a conversation with others related to well what exactly are people planning on sending, are they structuring it, do we want to start sending off CCR type summaries, are they putting everything, is their intent to put everything on the web and consider it of equal value. Sort of like are people just turning things on immediately or is there someplace that people are starting or should be starting, and this gets to be that issue of sort of did this issue of priorities, connected in with exactly what are people doing on all of that. So that was yet another piece that potentially made some sense.
And then the third bullet which under other potential topics, actually I’m confused here, the third and the fifth bullet I think are, gosh I’m confused about whether they’re separate topics or the same. And I apologize, the first time I sort of saw them done this way. We sort of talked about this issue of increased use of cell phones, PDAs, or whatever, to access and submit information, that turned into a conversation also relating to chronic disease management and how things are being sent back between home and wherever the databases are and sort of what standards are being used, how is this all being done. This is an area obviously where there’s some work going on with a workgroup in AHIC around chronic disease management so there is some, without knowing exactly where they’re going this may or may not be, how we may play this one, we don’t want to either conflict or do exactly what they’re doing, so that’s yet another issue.
Now those were sort of the three that I, I mean the three sort of catenations I was, I mean I would sort of disregard the rest of them for the moment and hopefully Mary Jo doesn’t take too much offense at that but that’s sort of how I put together three potential items. Now people can like them, dislike them, add things, subtract things, we’re open, Jeff, you’re next and then John Paul.
MR. BLAIR: It always seems as if whenever Paul raises a topic I wind up jumping in because I guess we seem to be thinking about a lot of the same things and you wound up saying one of your first items on there in terms of a topic was RHIOs and health information exchange and the NHIN.
So I’d like to open possible area of discussion that we probe down that path and it’s some of the issues that we’ve begun to face, we’re a small state so we started to look at a statewide RHIO, and as we did so we’re obviously aware on NCVHS of all the things we’ve done for standards harmonization and trying to eliminate silos, and it appears as if we’re just about to create some new ones in terms of networks. And I just have this feeling even though I can’t see Paul’s face that he’s probably nodding and saying this is probably what he’s running into as well.
Our perception is, we don’t really refer to it as that we have RHIO but that we’re one of all of these other folks out there with emerging RHIOs, and under the banner of RHIOs are four or five different networks, types of networks, and each of the networks wind up feeling that they’re either the core of an emerging RHIO or the nucleus of an emerging RHIO, or that they are the RHIO. And let me mention them because it seems as if they all have various degrees of federal support or programs but I’m not aware of a federal policy or guidance or strategy that is looking to pull them together and so here we are at the local levels trying to pull together these new stovepipes that we’ve created.
We have e-prescribing networks and they’re in pilot tests and they have CMS support. We have HIPAA transaction networks with payers, clearinghouses, and providers, with a whole set of standards for that. And you know that when we did our e-prescribing standards we tried to make sure that we wouldn’t have conflicts with some of them that overlap in terms of eligibility, medication history and others, so those are two networks. But in addition to that there’s tele-health networks that are going out to rural areas that are getting federal money and that if we’re talking about RHIOs in our state the folks that are heading the tele-health networks are winding up saying now just a minute here and winding up providing remote access for a physician to give care but the health record isn’t part of it and they want to link up with the health information exchanges. And that’s the fourth one, fourth network is health information exchange networks, so now we’ve got four different networks trying to provide care, in our state we’ve come together with our alliances, our health information exchanges, and we’re trying to see what we could to start to not have four separate services and then we’re not over yet because here at NHII we realize that there’s personal health networks and network services that are going out there as well.
And so I am offering as a topic for consideration for the NHII Workgroup that we look at what needs to be done to allow four different types of networks that are now being built out there at a fairly hefty rate to if not integrate them, because I don’t think we could integrate them yet, but if we could begin to develop a plan for convergence or a plan for coexistence, I think we could do, this could be as significant, or the next step of what we did with the NHII, this would be the next step, is how do we converge all of these emerging networks so that they could at least work together, we get the best instead of compete.
DR. STEINDEL: Jeff, can I ask for a clarification on what you’re talking about? Because when you first started talking I had a lot of difficulty with it because that’s supposedly what’s happening with the breakthrough use cases and the NHIN contracts. But when you got to the end of it I sensed there was something that we could mine and I wanted to get clarification because what the NHIN is dealing with is linkage of clinical systems that are used for clinical care of patients and what I’m hearing from you is, and we could look at some of the systems that you were talking about as they are clinical care systems and they should mesh with the NHIN, but we’ve also heard comments that well right now ONC is not looking at tele-health networks for instance, and merging them in, so should we be looking, should we focus this topic not necessarily on something that is staring at what ONC is doing but a way of merging in different types of medical information systems to combine a common database that we can use, common information base, and if that’s the way you mean it and the way to flesh it out then I can fully support it, but if it’s coming as a direct flag then I have a problem.
MR. BLAIR: Now, maybe my assumption isn’t correct here and if it’s not then we can move on. It appears to me as if those prototypes do not include tele-health, do not include e-prescribing, that they’re really focused on health information exchange and bringing those, which is good, we need to do that, but these were, I say health information exchange and probably also the HIPAA transaction standards but I don’t even know if they’re trying to merge those yet. So I guess maybe that is the thrust, Steve, good point, is I’m not seeing that they’re bringing the different types of networks together.
DR. DEERING: I would just wonder whether we might add some slightly different words to this. When we talk about them converging and we talk about building a single database I think the word that we’re looking for is interoperability, I think we’re really just trying to build the interfaces that will allow them to exchange the information and I think it is an important piece of terminology in my mind that we not use the word converge, merge, build a single database, exactly like that, I think interoperability, it may be too technical but if the President can use it why so can we.
MR. HOUSTON: Before I go to the topic I was going to talk about I think that in one sense I think that what Jeff is asking for though my initial thought is oh boy, yeah, that sounds good, I do tend to agree that, or do tend to think that that’s already I think part of the plan and so I’m just wondering whether there’s much value in us trying to get involved in that space.
MR. BLAIR: When I looked into it I couldn’t find that so that’s why I think it’s missing, but if somebody could show me that it’s really in the plan that would be great.
MR. HOUSTON: It needs to be in the plan and I’m wondering maybe another way to look at it is is it something that we can bite off because that’s going to be a very weighty issue. But I mean again, that wasn’t really my, the purpose of my comment was looking at the first bullet is one that sounds of great interest to me, I think that probably what’s going to be pressing with regards to NHIN is going to be, obviously nobody is going to be able initially out of the gate develop these RHIOs that have every scrap of information and I think there’s going to be a lot, I think we’re going to have to crawl before we walk, walk before we run, maybe if at the end of the day we had these RHIOs that everything from image data to lab tests, everything you can imagine ever wanting to know about a patient but I think there’s going to have to be a priority as to what makes its way into these things, when, and again, I think part of the priority is going to have to be not just based upon, I think in large measured based upon need but I think it’s also going to be based upon ability to look at existing data standards and how practical is it to try to make the data part of the exchange.
DR. STEINDEL: I just had a very quick comment, Simon, this is in response to John’s comment. It is in the plan if you consider the framework document the plan, it’s not in the current instantiation of the plan, which is the NHIN contracts, etc.
DR. COHN: Now I’m confused, tell me, I need a little —
DR. STEINDEL: John was asking the question of whether or not this is in the plan of ONC —
DR. COHN: Which bullet are we talking —
DR. STEINDEL: Combining the various networks.
MR. HOUSTON: Jeff’s suggestion of converging these —
DR. COHN: Oh, you’re not talking about the second piece, you’re talking about the first piece.
DR. STEINDEL: Yeah, and it definitely is in the long term plan but it’s not in the short term instantiation.
MR. BLAIR: So it actually spelled out the different types? I know it wound up trying to converge health information exchange and the NHIN but I didn’t see it referencing all of the four different types of networks.
DR. COHN: I actually don’t think it matters whether it’s part of the plan, I think we’re pretty clear that it’s probably not part of phase one of the plan, probably part of phase two or phase three, and I don’t know if that means you need to withdraw it —
DR. STEINDEL: No, that means we need to guide it.
DR. COHN: Yeah, exactly, I mean that’s an area where we could provide input into.
MR. HOUSTON: I just think there’s an enormous amount of meat to that and the question I guess we have to ask is whether, is practically within the ability of this workgroup to handle that type of an issue.
DR. VIGILANTE: What level were you thinking of getting involved? What level of guidance?
MR. BLAIR: The kind of problems that I was seeing is that if you have a health information exchange you start to focus on matching patients to their records and you deal with the privacy and security issues, and those are important things to consider. But you start to look at an e-prescribing network and it’s constructed differently, that’s primarily between prescribers and dispensers and then you have a network like a SureScripts that’s kind of making those links and then you tie into an RxHub because it’s providing formulary and eligibility information from PBMs and you don’t, the designs that we were looking for in an e-prescribing network, they didn’t involve matching patients to their records. And so it seems to me as if there’s potential for pulling these things together, the other piece is we started, New Mexico we started —
DR. VIGILANTE: You mean finding minimum requirements that would enable, I mean what level, because I think John’s comment that this could be a huge undertaking depending on how you scope it, right, so what level of scoping were you thinking about in terms of our role?
MR. BLAIR: Maybe if we receive testimony from, and I don’t want to interfere with all of those prototype things, but are some of them starting to look at these issues? Is anybody looking at these issues? If not then I think we may have prototypes that are delivered a year from now where we have separate silos because they haven’t looked at how to integrate the networks.
DR. DEERING: I have a thought if I could that I think is directly relevant here in terms of scoping what we do and, Kevin, maybe this will resonate with you thinking of what we do with CAB. If you focus very specifically on the interfaces it is possible to structure hearings that say okay where are the interfaces, what are the technologies that are out there to do these interfaces, what are the data standards that are being used to construct the APIs and to do the wrappers and to do this and that and the other and you can get deep down into the technical stuff if you want to. But at the same time you can bring out the sort of content issues about which pieces of content is it that you need to be interfacing one to the other and I think it could be very innovatively structured in a way that says in other fields they’re dealing with this issue of legacy, in a way it’s almost the other side of the coin from dealing with legacy systems. These aren’t legacies yet because they’re not built but the challenge is the same, how do you map to a different —
MS. MCCALL: I would say it reminds me of actually the creation of the internet and what it meant to create the internet and the standards there, if anybody has actually heard what all is involved and the fact that the internet is not the web and the fact that the web then Is not amazon.com. And so the paradigm shifts that we have to go through as we think about these things, those become valuable pieces of information for us to hold and what it means to actually have, what is TCP/IP and why is that valuable and the fact that there are all these different domain name servers and how it works. We tend to think about well, bringing all these different networks together and what I would say if we really understood the structure of the internet and then the layer of the web and then how that is used do they need to come together. And I am not a technology expert but just kind of dangerously knowledgeable enough to ask the question. And it also makes me want to know that we have to be additive, we have to harmonize here, and I am new enough to this and new enough to some of the AHIC activities to really want to know the answer to that.
DR. STEINDEL: Simon, if I can comment to both Carol and Kevin, there was a very practical issue raised last week in the presentation by the Certification Commission summarizing their work to date and really the question came up from the audience, how are you handling e-prescribing systems in your certification for your electronic health records. And quite frankly, and since I’m involved with the Certification Commission was involved in e-prescribing, Mark Leavitt gave a very beautiful answer and that was we don’t know. There are aspects of the EHR that are part of an e-prescribing systems, there are also other aspects of an e-prescribing system that may not necessarily manifest themselves in an EHR because e-prescribing is a little more then just transmitting a prescription. And we don’t fully understand as Jeff pointed out what is the relationship of firms like SureScripts into the system, what are the relationships of firms like RxHub, where does all this information come together to build a total e-prescribing system which we still don’t know how to do, nobody is offering one.
MR. BLAIR: Could I just throw in one more example here? Tele-health is pretty basic and it’s being implemented in many different places, it requires real broad bandwidth because it’s dealing with radiology images and it’s dealing with video and their focus is on bandwidth. So you have different issues and different requirements for the different networks, not only in terms of data but in terms of bandwidth, in terms of connectivity and who are you matching to and who are your users.
DR. DEERING: Another technical piece of what is emerging as sort of the overlay on the internet to map these things together is good technology and I don’t know that we’ve really heard about good technology and what it offers to take totally different applications that have disparate data, I mean good technology is now emerging to bring genomic data and imaging data applications together so that you can merge imaging and genomic data, I mean this is happening, this stuff is happening out there and it’s got great implications for bringing a tele-health system together that sends images or visual data and what is the data element behind those things that could be mapped. So again, there could be some interesting lessons learned there about the opportunities.
DR. COHN: Well, the truth is that we, I guess I should ask the final piece here which is the other piece was obviously PHR stuff and I don’t know, I’m not hearing a whole lot of interest in that one for the moment and it’s fine for us to defer. I will say that, I mean my interest is not that we commit to a direction at this point but it’s really more almost like a fishing expedition to see if there’s something there. And I would agree with Kevin and John Paul that whatever it is that are in these areas we would want to handle at the right level of specificity, I mean I do not want to have a deeply technical conversation about how tele-health connects in with the NHIN but one could imagine, I’m sort of hypothesizing this as a one day session where if we’re going to talk about any of this stuff it would be useful to hear from the NHIN people to find out both what they’re doing as well as any thoughts they may have about geez, data priorities and information exchange, and anything beyond what are the AHIC breakthroughs and what they’re beginning to think about as well as these other networks, I mean that might be a group to talk to and then talk to the other tele-medicine people, maybe a RHIO or two, this is just a though in terms of asking them the same sort of questions, two birds with one stone.
MR. HOUSTON: The case of data priority I think is interesting in my mind for a couple reasons, first I think that it’s something that as these different RHIOs and the NHIN comes together I think it’s an area where if we come out with some type of comprehensive report that discusses it it’s something that frankly people could take away and say this is practical use to me, I can look at this and say you know something, I don’t have to go through the gyrations or I can use this as sort of the basis of the foundation of building my RHIO. So I think there is something for which somebody can take away and have great value and I do believe though, and not to beat up Jeff over this at this point, I think that if we want to add value in the topic that Jeff discussed I think what we end up with is, I think it would take an enormous amount of work to get to a practical level of, have a practical deliverable. And so again, I’m just trying to think of things that if somebody takes away from this and says oh this is good, I can use this, the data priority is one which I really think we can achieve that.
DR. HUFF: I think that the data priorities is a good one, I’ll put one entirely new issue and that would be the standards for web or internet based services so that we standardize access to data so that you’re actually not doing messaging to get data but what you’re doing is calling a service that provides the data and allows you to, you’re opening a new marketplace where people can build applications without building the back end database. And I think that would be a huge benefit to the whole industry, I got Steve shaking his head no, there are people who are come and talk with us, right now it’s a collaborative effort between OMG and HL7 and it’s supported a lot by the VA, and so I think there’s some things there. Because again, it changes the paradigm, instead of trying to move data between all of the systems what you’re doing is standardizing the interface and you just ask for the data you want and it returns it in the form that you can use and consume it in your application and so everybody doesn’t have to build a back end before they can build a really nice front end application for viewing or e-prescribing or other things.
DR. TANG: Again, I think there’s another train that’s leaving that’s moving pretty fast and that’s the PHR so I’m not sure we want to abandon that at this point and the pieces that are probably troubling are that it would useful to have policy input primarily surrounds the health privacy, and we are talking about that in the Privacy Subcommittee but not specific, not breaking out the PHR part of it and I wonder if there’s use in doing that. Because we had talked about secondary uses in the last iteration but not it turns out that most of the suppliers of these PHRs are all secondary users and non-covered entities, so I think it’s worthy, that’s a worthy topic. I’m not sure how to, we have prior experience, we are in the process with the other, it could be more directed to PHR just to help inform the public, for one, and the people who are now operating these things, another.
DR. COHN: So met me just, I’m trying to make sure I understand what you’re asking for, I mean knowing, actually from my view they actually probably are not, I though mostly payers were going to be sponsoring PHRs and they’re certainly HIPAA covered entities, but what I’m saying is you’d want people like payers, you’d want these other groups that we have since heard about that have been establishing business associate relationships with providers and all of that —
DR. TANG: Well, people that are sponsoring these are employers, they use a third party, and payers, you’re right, payers have a relationship with the patient but the employer sponsored PHRs do not have a HIPAA related relationship.
DR. COHN: So this would be an update on previous work that we did.
DR. TANG: Yeah, it’s probably more specific to the operational need that’s now emerging.
MS. MCCALL: Just to add on, I see some intersections coming, I would agree that PHRs are coming up hot and fast and I think that they could be, there were people in our hearings that said look, they’re the next killer ap, I think they may very well be. I think that they will be offered by a part of, and certain industries that are unregulated but also much more playful, so I think that that’s one to go on the list. I think that, to go back to what Stan just said, there may be a different model that could be part of that discussion, could be anticipated or at least played with which is I have my information, me, in a trust, and so if you want to get it you can go knock on the door, it’s in a central cloud and all that kind of stuff. And that then may intersect with some other things we talked about which is aggregation, because these guys tend to be aggregation players and so we’ll have to think about secondary uses which then takes us to some of the issues around quality and what it means to actually aggregate and some of the data elements there. And so I see some themes emerging and we’ll have to tag them with some specific names, part of it may be PHR, part of it may be aggregation, part of it may be some sort of pilot that tries to live in the nexus as it were, some of it may be some different architectural, whether it’s an API or a different paradigm shift, and I’m hoping again these can go on the roadmap but I would concur with don’t let PHRs get away.
DR. COHN: Mary Jo and then I want to, what I may do is at some point I may ask for sort of a hand showing on various topics here just to give us a view of where we may want to go for the next hearing. Normally the things that don’t make it on this list we probably handle later on in the year.
DR. DEERING: I want to find a way to link PHRs and the issue of priority data and I was mentioning to Carol during the break that something occurred to me earlier this afternoon that may sound counterproductive or strange but if we stop talking about PHRs and EHRs entirely and just focus on the data and do not use the PHR as a construct whether or not it’s going down the track and that that’s our contribution is to talk about the data, the priority data, whether it’s being aggregated, whether it’s not being aggregated, what does it need to be standardized, how does it need to be merge, and we are after all the National Committee on Vital and Health Statistics and that gives us an ability to cross all of the areas that we work on by just a rigorous focus on the data, it’s all about the data, stupid, as they would say, so that’s my contribution.
MR. BLAIR: A little more example on that, put a little more flesh on the bones.
DR. DEERING: Well, for example, if we were to pull together the two strands of the priority data, both for moving around your various networks but also those where we might find recommendations that any PHR, if we wish to call it that, needed to focus its activities for interoperability, the hearings could be again a combination of what are the priority elements that are actually needed for these various aspects of health maintenance and care and delivery, and other aspects could look into okay, if it is about the data then that allows you to say, I’m thinking of the issue that the Privacy Subcommittee raised about okay, if there is control, patient control of the data, which they believe there should be, but they want it limited to certain data elements, then it again allows you a framework for talking about which data elements. And you’re not talking about limiting it anymore, which by the way I thought was from a communication and political point of view, an extremely unfortunate term, I think you could state more positively how you wanted to achieve anything less then blanket control as opposed to saying well we’re going to limit their control to only certain areas, it doesn’t play too well. So anyway, I’m just offering the non-PHR/EHR framework as a way to accomplish the goals.
DR. COHN: Let’s hold that thought for a minute without, if we don’t watch out we’re going to expand things to the point where we won’t get anything done.
DR. STEINDEL: To expand things but I hopefully will contract it as well is Stan’s comments on web service architecture, Mary Jo’s comments right now on should we just think of don’t think of EHRs and PHRs, think about data collections, this is really the approach that IHE is taking in harmonization efforts on an international basis. And they’re trying to bring things together and create actual exchange networks and they demonstrated one in HIMSS this year. I was thinking of letting it lie for a little while until we, as David said this morning, until we comment on the initial reports from the NHIN architecture people, because I’m sure the IHE architecture is not going to show up there and this is a good alternative but it’s very similar to the approaches that we’ve been throwing around. And they don’t think of EHRs and PHRs, they think of data collections.
MR. BLAIR: Could I ask a question about that if I may? And maybe my viewpoint isn’t proper but just for consideration, IHE and Stan, your suggestion, it makes sense as a next step, I tend to think of that as something where the Standards and Security Subcommittee has got the horsepower to go into those types of issues, I think it’s, I tend to think of it as more appropriate for Standards and Security rather then the NHII but I can be convinced otherwise.
DR. STEINDEL: No, it’s actually two aspects, one aspect, and this gets to what Kevin was saying earlier, there’s a down and dirty aspect of it and the down and dirty aspect, yes, that’s Standards and Security should be the one that looks at it and comments on it. But they also have a high level architecture aspect of it, of the various pieces and where they sit and how they interact and where the models are, and I think the higher level piece is something that fits in very well with this workgroup.
DR. TANG: I like the idea that Mary Jo brought up just in terms of trying to figure out some way to simplify things because I’m constantly trying to simplify things. But I think that if we, that’s looking at only the data, it may work for Standards but it doesn’t address the problem that comes up with PHR that we’re struggling with in the Privacy group. So it does depend who submits the data, whether they can control, delete, whatever, so unfortunately I’m not sure that that handles the hard part.
DR. STEINDEL: Well, if I can get back on my hobby horse, actually IHE at the high level also works on this aspect about how you label, how patients can label aspects of the records that flow from a privacy and confidentiality point of view and they have schemes for servers that limit the flow of that data, etc.
DR. COHN: Let’s just sort of talk about the relative priorities, we’ve been hearing a couple, we can’t do everything at the next hearing and once again I think we, I don’t think any of us are planning three or four days for the next hearing on this one and obviously somewhat how much we cover will depend on how much, whether it’s a day or a day and a half hearing.
I’m hearing an issue related to sort of data priorities for health information exchange that relates to I think both, I mean relates to data I think as we’re talking about it, both PHRs as well as EHRs and just sort of a data issue, I think Steve has brought up that IHE has some thoughts on this one, probably I would imagine, I’m sure there’s probably others but there is really, I think it’s a question of people who are beginning to do it or thinking about doing it, what’s important, include probably the CCR and the CDA crowd talking about some of these things, and it’s really that data piece, not talking about privacy, just talking about data, so that’s one clump that I would put together.
Then there’s a piece that I think Paul was bringing up, I think particularly relating to this issue of privacy, sort of an update on personal health records that relates with privacy and maybe I’m throwing in a little more of my own interest which is also sort of these new models, what AHIP is doing and things like that, in terms of what’s going on in there and any potential privacy implications —
DR. VIGILANTE: Parenthetically Florida is going down the route of using that construct for a very early stage EHR/PHR using claims data to generate it.
DR. COHN: Okay, so that would go along with sort of what a lot of the payers are working on, so I think there’s that sort of piece which is a little bit of an update plus as well as looking deeper into the privacy —
DR. TANG: Can I restate that maybe?
DR. COHN: Am I misstating it?
DR. TANG: No, just to reformat it, a charge could be looking at the different models of personal health information and PHRs and the privacy implications of those various models because there’s almost a different one for each model. Is that what you meant?
DR. COHN: Say it again, I think it may be —
DR. TANG: Because there are maybe four or five different models of having personal health information in electronic form and based on how its sourced, which could be state entered, has different privacy implications, outsourced, and I think it’d be incredibly useful to the industry and the patients to understand, to have some way of thinking about it.
DR. COHN: Okay, various models, update on various model as well as privacy, okay, thank you, I think you’ve help clarify that.
Now there’s something called standards for web internet based services, and I don’t know if that gets, if that’s really merged, that seems like a separate thing and maybe not a long update —
DR. HUFF: — you have to have the standard terminologies and other things, that was shared information, you don’t know what you’re going to get back in the service, so it’s clearly related to the standards but the whole architecture piece as Steve points out has to do with where is it held, what are the security issues related to that, that sort of stuff. I think it’s enough different —
DR. COHN: Okay, to be a separate bucket, we haven’t talked about there’s probably also the hearing from the NHIN contractors, I don’t know if that relates and that may be completely off base and maybe it’s a different workgroup as we’re talking about it, so I’ll put that aside. But then the other piece is really I think what Jeff was articulating which is how this all sort of fits together, which really would involve a conversation with the NHIN contractors as well as a variety of other people. And I guess, I mean are those sort of like the four things that we’ve been talking about? Could I just ask for maybe a, I just want to get a relative sense of, I mean I’m not taking anything off the table but in terms of if we’re going to do a hearing some time in the next couple of months I’d like sort of relative senses of priority —
DR. HUFF: [Comment off microphone.]
DR. COHN: Well, I think —
MR. BLAIR: Many of us I think may be interested in more then one —
DR. COHN: I think many of these things would be half day sessions so I’d say why do we start voting for two and see how it comes out. Steve?
DR. STEINDEL: Simon, I have a question for you, when you say hearing from the NHIN contractors versus hearing about the NHIN contracts, because hearing from the contractors is something that ONC determines because it’s on their time.
DR. COHN: You mean if there’s a separate issue you mean or part of this issue that Jeff was bringing up?
DR. STEINDEL: No, I’m just talking about the practicality, we’ve been offered to get involved with the NHIN contracts after they deliver phase one, the actual pilot prototypes and comment on them. I don’t know how much availability we have to the actual contractors prior to that point.
DR. COHN: That may help us prioritize when and where, I was just postulating that with what Jeff was talking about, hearing from the contractors exactly what they were thinking about would be a useful piece to begin to sort of ask how it’s all coming together. Now I could be right or wrong here, Jeff, it sounds like you want to make a comment —
MR. BLAIR: I think Steve, pragmatically I wish we could hear from them but Steve may be quite right and we just may not have access to them for a while, it would be nice if we did, but the things that I was thinking of is Inland Health up in that Washington area, they claim to already have started to work to integrate health information exchange in tele-health. It’d be interested in how they’ve been doing that and I think that there’s a few other networks that are struggling to try to see how they start to pull these things together, so we might be able to hear from them as well. So anyway, that’s some of the things I was thinking of.
DR. COHN: So do you want to just do a little hand raising? So I think the first one is the data priorities as we’ve described —
DR. HUFF: How many do we each vote for?
DR. COHN: Vote for two, I think it’s two out of three is probably, actually two out of four I guess. Okay, the next one is the PHR, privacy issues. The next one is the standards for web based internet services, and then the final one is this issue of putting tele-health in with all, I mean all the networks together. I think we see where the priorities are, Jeff, I’m sorry, we’re counting here and you can’t see, that’s sort of no fair. What I think we heard was data priorities appear to be sort of the number one focus, then this issue of the PHR privacy piece as well as update is number two, the standards for web internet piece is number three and then the other piece is number four. And I think the fourth one, I mean my own sense is that, and I’ll tell you, I didn’t vote for this one only because I think it’s premature to deal with that one quite yet, that was just my own view on it which is to say we will keep it obviously on the list and I think we’ll review it probably at the next hearing to see if it may be an issue that’s ready for more conversation later on in the year. And depending on how we do it we may actually be able to, I mean it sounds to me like that third item, that internet services, is probably a presentation, it’s not a half day conversation, is it, Stan? Or is it a half day conversation?
DR. HUFF: They have a work plan — [comment off microphone] —
DR. COHN: That doesn’t sound like a half day, I guess I’m asking is your view a panel of people commenting on it or was it more update telling us what they’re doing and then what the potential is?
DR. HUFF: I think you could do it just sort of as a tutorial — [Comment off microphone] —
DR. COHN: Yeah, so there might be an actual way to stick that —
DR. HUFF: A discussion about is there something we should do to help that, what does it mean to us.
DR. COHN: That’s what I mean is that sometimes things which aren’t a full four hours, I mean I think what Jeff is talking about is probably a three quarter of a day activity, so this on the other hand may be something we can slip in if we go a day and a half, probably won’t get handled if we only do a day.
DR. VIGILANTE: Jeff’s topic may be more, well, it could be again addressed in the Standards Subcommittee as well, it could be if they wanted to pick it up another way to address it.
DR. COHN: Well, they start at 1:00 tomorrow so he has his chance again, we just roll these things over to the next workgroup or subcommittee. And that’s true, my sense is that they have a pretty full agenda also but I think timing is a real key issue here and it’s hard to, I mean it’s one thing to hear about how RHIOs are connecting, trying to connect themselves, I guess to my view the larger conversation which is how all these things might work within NHIN, which is really the integration paradox here.
DR. VIGILANTE: Is anybody looking at best practices?
DR. COHN: RHIOs? Well, Brailer announced at HIMSS about a week ago that he has decided to look at best practices around that but of course I think AHRQ had already thought they were dealing with best practices, so I’m sure they’ll be looking into it together, but I think those are, it’s a new area —
MS. MCCALL: I think if you take out the last S, it’s singular right now, best practice, it’s early.
DR. COHN: That’s probably true. Well, okay, it’s 6:05, I want to thank you all, what will happen now is that Mary Jo and I will look at, I think realistically Mary Jo has already told me that she’s not ready even to start working on this and put it together until mid-April, starting working, which means it’s going to be at earliest this will be probably a mid to late May to early June. I guess I would ask, I mean if we decided to do this the day before the next full meeting is that going to be, I mean how painful is that going to be for everybody? Okay, once again, that’s a good sign. My preference is, I think we’re doing a four day meeting this time and I don’t know that we want to turn this into a regular thing, I think it will be an issue.
Anyway I want to thank you all, as we move forward on this one and begin to get a date, let everybody know, and probably do a conference call to further refine things. So thank you all.
[Whereupon at 6:12 p.m. the meeting was adjourned.]