[This Transcript is Unedited]

Department of Health and Human Services

National Committee on Vital and Health Statistics

Subcommittee on Quality

February 9, 2011

St. Regis Hotel
923 16th Street, N.W.
Washington, D.C. 20006

Proceedings by:
CASET Associates, Ltd.
Fairfax, Virginia 22030
(703) 266 8402

P R O C E E D I N G S (4:07 p.m.)

DR. MIDDLETON: The exercise we have for this breakout, there is an agenda, but the primary exercise is to review the letter and make some edits based upon this afternoon’s conversation.

DR. CARR: And we probably want to go around the room, just go around for the record.

DR. MIDDLETON: If we could go around the room and make introductions for the record. Brenda, would you start?

DR. EDWARDS: Brenda Edwards, liaison from NIH.

DR. WARREN: Judy Warren, University of Kansas School of Nursing. No conflicts.

DR. CARR: Justine Carr, Chair of the committee, Steward Health Care System. No conflicts.

MS. JACKSON: Debbie Jackson, National Center for Health Statistics, CDC, committee staff.

DR. QUINN: Matt Quinn, NIST, staff.

DR. MIDDLETON: Blackford Middleton, Co-Chair of the subcommittee.

DR. FITZMAURICE: Michael Fitzmaurice, Agency for Health Care Research and Quality.

(Intros around room)

DR. MIDDLETON: Did we miss anybody?

DR. TANG: Paul Tang, Palo Alto Medical Foundation.

DR. MIDDLETON: Oh, yes, the co-chair. We have up until 5:30. We may not need all that time. We wanted to review the quality letter text itself based upon the conversation and discussion and presentation this morning, and then talk about the PCAST and IOM report, and just review the thoughts we had about the implications for Quality of the PCAST report. As that reply goes forward from the NCVHS, we can make sure the Quality subcommittee has a chance to opine and weigh in.

Once we have the quality letter up, we can review the notes I have from the commentary this morning, and suggested text from Leslie Francis for the one privacy footnote she requested we add. So really, it will be open forum. I think we can probably get through the suggested edits and keep them if you will at the — we aren’t trying to redraft the letter, just make annotations or edits that may get more meaningful, more readable and more palatable to the committee at large.

So let me know when you are ready, Paul.

The easiest edits perhaps to dispense with is Leslie’s comment about making sure that when we use consumer data, patient level data for quality reports, that we reflect the privacy concerns that might exist when providers and patients are sharing individually identifiable patient data on preferences, because of the concern that it might bias a provider one way or the other based upon the patient’s preferences or satisfaction or other markers they may report of patient experience.

So I think in one specific instance in Leslie’s supplied text, we can add a footnote near to the bottom of the second paragraph in the first recommendation which will address this issue.

DR. TANG: Say that again?

DR. MIDDLETON: We are not projecting it?

DR. CARR: Can I just ask a comment? I think that the history of this committee is one of longstanding commitment to privacy. I just want to make sure that we stay at the same level. If we are at the 15,000 foot view, we don’t want to go to the 1,000 foot view.

Therefore, I think it is worth having a comment about privacy, as we always do. That is part of the research of any privacy implications. But I think it gets quite granular to jump to the scenario that Leslie described. That may well come out in the research, but I think it is inconsistent with the altitude of the letter.

DR. MIDDLETON: Her suggestion was, just to reiterate, after observation one, focus on the consumer’s perspective. Recommendation one, prioritize creation and funding for development of measures that are meaningful to consumers.

She felt that a footnote was warranted in the very last sentence of that paragraph following that recommendation, where it says, measurement areas would include patient experience, patient specific outcomes, functional outcomes, et cetera.

I think we could put a footnote there. Her proposed text is the following. It also involves consideration of the privacy and confidentiality issues that may arise with new sources of information such as patient generated data. That may not be the best way to put it as a footnote. We can maybe just add a privacy concern in this recommendation.

DR. CARR: Yes. So is this research? This one is prioritize creation and funding for development of measures.


DR. CARR: Encompassing both the value to the patient, the physician and the privacy or something like that. I just would take it up a little.

DR. MIDDLETON: So maybe it is right up in the first sentence. NCVHS recommends that measure development activities be broadened to include measures that specifically focus on the needs of consumers as they make health care decisions in partnership with their health care team, recognizing privacy issues. I’m not good at this public wordsmithing.

DR. CARR: Just the concept.

DR. WARREN: One of the questions I had when I think about this is, this is all about creating and funding development measures. There are no privacy issues in the development of a metric for a measure.

DR. CARR: That is correct.

DR. WARREN: It is only in the use of those that you get into privacy.

DR. MIDDLETON: That is correct.

DR. WARREN: We don’t need that.

DR. TANG: I agree, I agree. It is hard to improve on that statement. That is like a motherhood — why would there not be a footnote in eery single thing?

DR. CARR: Yes, exactly. The use of any data is always predicated on respect for patients’ privacy.

DR. WARREN: I think it is one of those things that, we get so worried about privacy; we see it everywhere. We just see it everywhere without looking at the where that we are looking at. We just muddy up the waters, when what we want to focus on is, we need these metrics developed.

DR. MIDDLETON: The measures that are relevant to consumers.

DR. TANG: But Judith, the way she said it is the best. It has nothing to do with quality measures.

DR. CARR: It is the measure itself.

DR. WARREN: It has to do with the metric, not with the patient.

DR. MIDDLETON: So I think we have then as a subcommittee dispensed with the comment, taken under advisement, acknowledged the issue, but the report is about measure development.

DR. CARR: You could also raise the issue of the data integrity, because patient reported outcomes are going to be biased whether they are electronic or written or verbal. We know that.

DR. WARREN: I guess I object to that statement. It was one that I objected to Raj, too, when we talked about satisfaction. What a patient tells you is what a patient tells you, and it is accurate and relevant from their perspective.

DR. CARR: No, no.

DR. WARREN: It may not match what you want them to say.

DR. CARR: No, what I was saying was that you may choose to sequester information depending on where it is going. Someone raised awhile back the health club thing. So I went to this health club spa place. They wanted more history than a PCP asked. They wanted to know surgeries, they wanted all these things.

DR. MIDDLETON: So let’s declare victory and move forward. Another one while I am right here, Blackford, —

DR. MIDDLETON: Yes, the title.

DR. TANG: — is the title. If I just changed it to needs, consumers’ needs. In fact, we used needs of consumers right down here, so there is no reason we couldn’t do that.

DR. MIDDLETON: It could be consumer needs or consumers’ need or consumers’ needs.

DR. TANG: Consumers’ needs, how is that?

DR. MIDDLETON: I like that. That would be possessive for consumers?

DR. WARREN: Is the development of the measure for the need of the consumer or is it for something else? To describe the health state of the consumer.

DR. MIDDLETON: Actually for the consumer.

DR. WARREN: So this is for the consumers’ use?

DR. TANG: It is a hybrid, so for consumer use, that is how it originated. But then the provider also would like to do things, maximize, optimize things, that the consumer feels are important. Their functional status is important to them and it is important to the provider.

DR. WARREN: I agree with perspective.

DR. QUINN: I like perspective as well. The point of it is that we are developing measures that are in the consumers’ eyes. This is the way that the consumer wants to make decisions. For us to decide what their needs are is somewhat pejorative, even if we ask them what their needs are. I think we want measures from their eyes on the health care system.

DR. TANG: So we have two votes for perspective.

DR. MIDDLETON: I fall with perspective, too. It is not the definition of the need, it is actually the perspective.

DR. TANG: So we just declare victory. Do you want to change this sentence then, specifically focused on the needs of consumers? We focus on the perspectives. I think this actually may be okay. I think this is okay.

DR. QUINN: As they make health care decisions. The consumer is the actor and what they perceive that they need, versus us deciding what they need and giving it to them.

DR. TANG: So you wanted to add a modifier then?

DR. MIDDLETON: We could in the text perhaps use both terms.

DR. TANG: So specific focus on the needs of consumers.

DR. QUINN: The consumers as they make health care decisions. The actor there is the health care consumer.

DR. WARREN: Why don’t we just say, focuses on the consumers as they make health care decisions, just get rid of needs?

DR. MIDDLETON: That is actually even better.

DR. TANG: Going once, going twice.

DR. MIDDLETON: Did you hear the last proposal?

DR. TANG: It says to remove needs of. Here we go. We made two decisions.

DR. FITZMAURICE: Focus on the consumers, that is like focusing on the patient, as opposed to the needs that they have to make decisions.

DR. WARREN: They don’t need to make a decision.

DR. FITZMAURICE: As opposed to, I am looking for a hospital and I want to see measures.

DR. QUINN: Versus focusing on the quality measure that is neither relevant to the provider or the consumer, that is a reportable measure that goes into the ether.

DR. FITZMAURICE: As opposed to focusing on the needs of the providers or the needs of the payer.

DR. MIDDLETON: I think we should leave needs in. So we recounted the ballot, Paul. Taking this round and moving on. The other thing that was important in the discussion around the first recommendation — actually, it is not this recommendation. Moving on to the second observation and recommendation, any other commentary on the first observation and recommendation?

MS. JACKSON: I thought there was something on the first recommendation. Maybe I misunderstood about acknowledging the work that has already been achieved, or was that something later?

DR. TANG: Acknowledging the other work that has already —

MS. JACKSON: That had already been conducted.

DR. TANG: By saying something like, continuing or building, where is that?

DR. CARR: We say most current quality measures or directed toward providers.

DR. MIDDLETON: Paul, could you do it all in tract changes so we can see where you —

DR. TANG: It is in tract changes.

DR. CARR: How about in the second sentence after the testimony is focused on, and then before we say most, say, although inroads have been initiated, most quality measures are still directed toward providers?

DR. MIDDLETON: Or building upon population satisfaction assessments. They need to look more at individual consumer level measures or something.

PARTICIPANT: One thing that I heard was that in recommendation number one, the phrase there that is in bold, to say prioritize creation of funding for advancing the development of measures.

DR. MIDDLETON: Yes, that is another one, actually. So that is pretty non-controversial. Let’s get that one done, Paul.

DR. TANG: Of and funding for advancement? Prioritize creation of and funding for — why is creation in there?

DR. MIDDLETON: The advancement and development of measures, something like that?

DR. TANG: And funding for — advancing is right. Do we need creation? How about, advance the development of measures? Maybe prioritize and fund development of measures that are meaningful to consumers. We don’t have the notion of continue in there, that is the only thing.

DR. CARR: There were two things. One is, prioritize the creation and funding for advancing the development. Why did we have that, advancing the development?

DR. MIDDLETON: The notion was to capture the, build upon what already has been happening.

DR. QUINN: The first sentence recommends that measure development activities be — NCVHS recommends building on current consumer centric measure development activities and building and broadening —

DR. TANG: This one you are talking about?


DR. TANG: NCVHS recommends —

DR. QUINN: Building on current consumer focused —

DR. CARR: I think there is an important concept we don’t want to lose. I think the sentence says, recommends that the measure development activities be broadened to include measures that specifically focus on consumers. So I think that is an important statement. Then also to say, recognizing that great learning has already occurred from the few measures we have, or something like that.

DR. MIDDLETON: Although we don’t feel that HCAPs is part of the new paradigm. So I don’t want to undermine this message by diffusing it with acknowledgement about stuff which we don’t believe is actually making the grade.

DR. TANG: Used or useful.


DR. CARR: It is used plenty.

DR. MIDDLETON: It is used. I have never ever seen it in the medical record.

DR. CARR: No, but the needs of consumers, when consumers go to Hospital Compare, the first thing that comes up is what was the experience of care of the people. So I would say it is used a lot.

DR. MIDDLETON: So are we revising the title back to the original or leaving it as the revised?

DR. TANG: Do you want to go back to the old? Is this the shorter way of saying what we said before? The creation was sort of funny, anyway.

DR. MIDDLETON: Then the first sentence has the acknowledgement of the past —

DR. TANG: Building on current consumer focused —

DR. QUINN: Continuing to support building on current consumer needs measure development, as well as broadening development activities.

DR. MIDDLETON: You have to fix the grammar.

DR. TANG: I think we are being redundant redundant. When we introduce the consumer focus, we are then saying focused on consumers.

DR. MIDDLETON: Leave out the consumer focused and just say, building current measure development efforts. It is a little more vague.

DR. TANG: Building on current measure development activities, broaden the scope to specifically focus —

DR. MIDDLETON: Yes, there you go.

DR. TANG: Specifically focus on the needs of consumers as they — how is that?

DR. QUINN: If you want to be really specific, you can say building on caps.

DR. TANG: We want more than that.

DR. MIDDLETON: That was good. That was Walter and Leslie’s comments, basically. One other thing Leslie mentioned was, are we explicit enough about patient preferences and value assessments and stuff like that? I think that comes in the next recommendation. I just want to double check to make sure we have that language.

DR. TANG: That was her radical statement. I think we pretty bluntly said consumers do not use available quality reports. DR. BLACKWELL: Preference is mentioned in the second paragraph, last sentence, and that is it.

DR. TANG: I wonder if we can stick preference into number one. Desire for information that is relevant to their personal health care need —

DR. MIDDLETON: And preferences.

DR. TANG: — and preferences. Can I do personal health needs, health care needs?


DR. TANG: And their preferences in a way that is easy to access and understand.

DR. WARREN: Is it care preferences?

DR. MIDDLETON: It is preferences writ large.

DR. TANG: I need to go after work, or need to go somewhere.

DR. MIDDLETON: The car is in the shop, I need a taxi, whatever. Or I don’t like surgery, I want to do meds. That’s good. Maybe we are a third of the way home.

Bill had a variety of comments about the data, decision making, averages versus prediction, sufficient data and piling on, recommendations two or three that are already in process or underway. But at the same time he says we don’t have measures to do the things that we are describing here. So I was a little confused, but are there things we can do to address his concerns?

DR. CARR: I think he is saying we don’t have the data to make the measurements. We don’t have a source of that data, but that is the point of the research.

DR. MIDDLETON: And shying away from cost measurement being too dangerous. That is part of the problem. We have got to do it.

DR. CARR: It is true that it is a bit of a shell game, if you negotiate higher rates and so on. On the other hand, the deductibles — there are issues that impact care delivery based on your deductible or in some cases your copay.

DR. MIDDLETON: So I think we are agreeing not to modify based on this set of comments again today.

DR. QUINN: The main change that we made prior in the conference call we had was insuring that we weren’t piling on and that we weren’t saying something that was redundant or not usable in describing the accountability and the value measure.

DR. MIDDLETON: Judy had a comment, what needs to be measured, not what is measured. So were we explicit enough in our language? Maybe you can help us again, Judy. Where can we be more specific or more emphatic about identifying the research to assess what needs to be measured, as opposed to not what is measured, as you said?

DR. WARREN: Part of that was just following up on a comment that Paul had made. I think our very early quality metrics were things that we could get data about that were already there, which wasn’t necessarily what we needed to take a look in terms of quality.

It has always fascinated me when I look at quality, it is kind of a so-what. There are other things we need to be looking at, but I have never had the time to go figure what those things are. I don’t know if we need to be more explicit, although I want to make sure I understand that.

DR. MIDDLETON: Part of it is hidden in that little sentence, measurement areas would include patient experience, patient specific outcomes, outcomes that are stratified, not risk adjusted.

DR. CARR: What line are you on?

DR. MIDDLETON: That paragraph is under recommendation one, last sentence after recommendation one.

DR. WARREN: In the parentheses, next to last.

DR. MIDDLETON: I think this was trying to get at those new things that needed to be measured to permit patient stratification and individualization of risk prediction, costs, et cetera. I don’t know. Can we say more?

DR. CARR: I thought we were done with that.

DR. WARREN: There is something about saying — to me it is the revelation that the letter is getting at, is, we need to figure out what is important to measure and measure it, and not let ourselves be limited by what is easy to measure. Some of these things are going to be very hard to measure.

DR. QUINN: There has got to be a change in momentum. That we currently measure it doesn’t mean that we need to continue to measure it. That is not relevant.

DR. WARREN: We have come a long ways in our own ability to measure things and to analyze them since we first started doing QA. So I don’t know that it needs to be more explicit, but I think that is an important part.

DR. MIDDLETON: Your comments about oncology and the symptom reporting and whatnot going on both trials and therapeutic protocols was right on. There is a lot of sophistication there in terms of symptom dairies and whatnot as relevant to the oncology protocol perhaps, but it is that idea extended to whatever the patient is worried about.

DR. CARR: Which further underscores why we are building on some good work that has already been done. I think this is fine. I don’t have a problem with it.

DR. MIDDLETON: Okay. Then this idea of the patient activation did come up, too. The patient activation measures was very profound testimony during the two days. That was really interesting stuff. Is that part of observation one?

DR. TANG: In this list at the end, patient experience, patient specific outcomes, —

DR. MIDDLETON: Right in there.

DR. TANG: — put patient activation.

DR. MIDDLETON: Yes, patient activation and experience. Keep it simple.

DR. CARR: Isn’t that a goal? The whole point of doing this is to make the measures usable to engage a patient. So I wouldn’t tuck it between two comments. Should we say testimony focused on consumers’ desires.

DR. TANG: She says, measurement areas would include patient experience, patient activation, patient specific outcomes.

DR. CARR: But in the first paragraph, where we are just saying testimony focused on consumers’ desires for information, but the overarching concept is that an engaged patient as a partner is a more valuable partner.

DR. MIDDLETON: Right, that is the reason.

DR. TANG: Where is that? Is this in observation one?

DR. CARR: In observation one, I think in the very beginning an underlying concept is that an engaged patient enhances care delivery or something like that.

DR. MIDDLETON: It is distinct from the population health concept. It might be a sentence right in there where you are.

DR. CARR: It is saying engaged patients are more activated. They are not engaged right now because they don’t have the right measures or language. So sentence one is, we want an activated patient. Sentence two is, we want to reform what we have to enhance the activated patient.

DR. TANG: It says here we know a whole lot about it. We know what measure and what comes of it.

DR. MIDDLETON: That is fair.

DR. CARR: I would say — maybe this is a little bit of where Bill is coming from. There are lots of things we could do. Why are we doing this? Given the information we have, are we willing to say that patient engagement is better than disengagement?

DR. MIDDLETON: You are right on the clinical premise. It is absolutely true, well documented, activated engaged patients do better. Clinicians feel better treating activated, engaged patients. The problem is, we don’t measure engagement or activation ever, unless it is experimental.

So to further that therapeutic relationship, blah, blah, blah, we need measures of patient activation.

DR. TANG: I might stop it at this, crucial to their participation — since patient engagement is crucial to their participation, satisfying their needs is a goal for quality measurement strategy, put like that.

DR. CARR: That is fine.

DR. TANG: Judy Hibbert says that when you do measure patient activation as a measure of PAM, you can not only predict what they will do, but if you change it — I don’t want to make everything on that one, that is all I am trying to say.

DR. CARR: I think that is good.

DR. WARREN: I have a request. Patient activation, it sounds like this is something that is coming out in the literature. When I read this letter, and I know most of the people that I associate with, they are not going to know what you mean by patient activation, and they will think it is the wrong word.

DR. CARR: Patient engagement?

DR. WARREN: Engagement would be better, but I am wondering if this is a word that is coming out of the literature. Maybe there should be a footnote defining patient activation.

DR. TANG: It is. I am just a little nervous about relying on one researcher and one tool.

DR. WARREN: Then I would say engagement.

DR. QUINN: I think it is okay to just have it in that list.

DR. TANG: Or down below, down here?


DR. TANG: I think what Justine is trying to say is, let’s give a little bit more reason why we should completely change the paradigm.

DR. WARREN: When I think of patient activation, it is like someone is throwing an on switch.

DR. TANG: It is.

DR. WARREN: I am going to activate this whole piece of equipment.

DR. MIDDLETON: The yeast is rising, the oven is on.

DR. WARREN: Yes, we have activated the yeast. That is what we have done.

DR. MIDDLETON: The clinical point is, patient activation is ideal. Clinical outcomes are better when patients are highly engaged, or something. Then say patient activation later.

DR. TANG: We were going to say why we switched from provider directed quality measures. In fact, that is when we switched the order. I will do that now to show you where I am headed. We recommend that the paradigm be shifted to focus on consumers. Now use this to justify our change in perspective. How is that? So that is building a rationale —

DR. MIDDLETON: The premise.

DR. TANG: Yes, and it tells us why we chose this perspective. We could start then with, currently most quality measures.


DR. CARR: That is great.

DR. MIDDLETON: The sentence which follows, in addition, they generally do not encompass population health or measures of patient activation which are central to the emerging models of care delivery, could be another —

DR. TANG: I’m not sure it is in addition to what I just said. It is a little funny now.

DR. MIDDLETON: Too much?

DR. TANG: Yes.

DR. MIDDLETON: We got patient activation in the list below, so let’s take the ground and move on.

Don had many comments about patient reported outcome measures, where there is some current work. Have we covered number one sufficiently? That was the one that generated the most comments.

DR. CARR: We are still on one, right?


DR. CARR: We have patient experience, patient specific outcomes. Do we want to add patient reported outcomes?

DR. MIDDLETON: I think that is the same thing, but not necessarily, I guess.

DR. CARR: Not really. But we do have functional outcomes.

PARTICIPANT: And patient generated data.

DR. CARR: Yes, and patient generated data.

DR. MIDDLETON: We have got it, patient generated data.

Two and three, there weren’t as many specific edits recommended, just discussion. So I am at a little bit of a loss as to whether or not we need to look at edits, but let’s just go through it as a group now and make sure we are all okay. Anybody have last-minute edits or forever hold your peace?

DR. CARR: I do agree with Bill that we are throwing costs out there in many different ways. Right now on Hospital Compare they have what was paid, but as you know, DRG has the same Medicare rate for every DRG. So it is payment, so that is Medicare driven. If you go in Tufts Tiering in Massachusetts, if you negotiated a high rate you dropped down a tier because it cost too much.

DR. MIDDLETON: But this is exactly the problem, is that reimbursement may be the result of negotiation or a market position or whatever, and may or may not be, or is only indirectly related to the actual cost.

DR. CARR: So that is what we are talking about, is the cost of care, direct and indirect costs of care.

DR. QUINN: From the consumer’s perspective too, one treatment option may result in X weeks off of work, and another one might result in less time off of work. So there is a, what is this really going to cost me perspective that isn’t available today, looking at these things.

DR. CARR: So it is cost in dollars and cost in other impact days, work days.

DR. MIDDLETON: Personal costs. Maybe there are opportunity costs, personal cost, not just the monetary cost.

DR. QUINN: So maybe one treatment is only available at a hospital that — my parents are in Dayton, maybe the treatment is only available in Cleveland. When they think about that, they think about how am I going to get to Cleveland? What if I have to stay there seven days or a couple of weeks?

DR. CARR: So do we say that we are talking about multiple types of costs?

DR. MIDDLETON: Second sentence, consumers want information and transparency about cost and quality to inform their health care decision making.

DR. CARR: I think what we need to say is, cost may be not just the co-pay or the total cost, but may be the costs in days of work or travel costs and so on.

DR. EDWARDS: I was just wondering if it is pretty standard that when you say health care value, quality per unit cost, is that a standard understanding? And does that cost in the broader sense is so these direct financial costs outlay, indirect costs, cost to your family?

I don’t know, I don’t work in that area, but a bundled statement that at the moment is fairly known to those who do —

DR. MIDDLETON: Conceptually? Yes.

DR. CARR: The value is the cost-quality equation, I think.

DR. EDWARDS: I am just trying to say, how much do you want to go about, at this high level, to give the definition, if you want to make sure the Secretary knows that you understand that you are talking about the broader definition. But if this is known, —

DR. CARR: No, I wouldn’t assume it is known. I think there is a value in saying the cost to the patient may transcend the dollar cost of the co-pay, but also include days lost from work, child care.

DR. EDWARDS: Cost to society.

DR. MIDDLETON: So let’s hold these two thoughts. One is, conceptually quality per unit cost will make sese to policy types to benefit managers. But do we want to expand somewhere the notion of what are the real consumer costs?

DR. CARR: Personal costs.

DR. MIDDLETON: Personal, monetary.

DR. CARR: I think that might help build a little bit. When you say cost to society, we have all these numbers. You can pull any numbers out of any paper. But it is not real.

(Simultaneous discussion.)

DR. CARR: No, thank you for raising the question. I would expand to somewhere have in here not just the cost of the visit or the co-pay or the deductible, but the cost of days lost, child care, travel.

DR. TANG: How about down here, just measuring costs, open paren, including blah, blah, blah? Is this what we are talking about?

DR. MIDDLETON: We could put an explanatory sentence up in the front, observation two.

DR. TANG: Actually we have this. For example, consumers are primarily concerned with out of pocket costs and indirect costs, i.e., or maybe we say, e.g.

DR. EDWARDS: Maybe there is a way of putting another modifier up in your first opening paragraph that might foreshadow that you are going to get into that recommendation. That is just an opinion.

DR. TANG: Another important cost is the caregiver cost, the cost to the caregiver, which is enormous.

DR. CARR: Again, this is a good offset to Bill’s thing. We are not trying to just figure out what was the payment rate, but we are trying to get to the personal cost. I do see that we have it there, but I think if we moved it up front, it would get people out of that financial paradigm.

DR. MIDDLETON: So Paul, I think the detail is good down there, but maybe a new third sentence after, there was, and consumers want, something about cost to the consumer may be in the form of direct clinical costs as well as opportunity costs.

DR. TANG: Up in paragraph one?

DR. MIDDLETON: Yes, I am trying to do the general —

DR. CARR: The third sentence, yes, after the consumers thing. Costs include not only the cost of the procedure or visit, or the co-pay or the deductible, but may also include the cost of days lost from work, child care, spouse care and travel.

DR. TANG: Say that list again, please.

DR. CARR: Would not only be the dollar cost of the procedure and the co-pay, but also the cost of days lost from work, caregiver, children or spouse, travel.

DR. EDWARDS: These are important for benefit managers in corporations, too.

DR. CARR: Yes, you are right.

DR. MIDDLETON: Or we can be generic here and specific below. If we were generic we could just say, costs to the consumer include not only the costs of care, but opportunity costs as well, and leave the detail below.

DR. CARR: Opportunity costs seem — I’m just not familiar with that term. Ancillary costs or something.

DR. TANG: So it is repeating. Do you want me to take it out?

DR. MIDDLETON: Can you go back up?

DR. TANG: Take it out of the list?

DR. MIDDLETON: And then go down below?

DR. TANG: I think we can take it out of the list. If we introduce this concept of non-direct costs, we don’t have to repeat it down here.

DR. WARREN: Did you have child care costs up in that list?

DR. CARR: We said parental, but it is child care.

DR. MIDDLETON: Or maybe we could be more generic, costs to consumers include not only the costs of care, but other non-monetary costs.

DR. CARR: They are monetary, they are just not medical.

DR. MIDDLETON: Yes, didn’t work.

DR. TANG: So I will take out the example down here because it is repetitive. We say it, indirect costs.

DR. MIDDLETON: Moving on. That was it really for two. Three.

DR. CARR: I just have one question. I was just looking up, NCQA came out with their accountable care measures, but they look remarkably like the HEDIS measures.

DR. MIDDLETON: Just a few weeks ago, right?

DR. CARR: I may not have read it carefully, but I didn’t get the continuity of care piece.

DR. MIDDLETON: Maybe the thing here is just like the other paragraphs. Do we need more grounding example, tangible language or something?

DR. CARR: When we had the hearing last year, not in 2010 but in 2009, in October, we had a presentation from NCQA. They were attempting to measure continuity of care. I think it was a great demonstration of how difficult it is.

DR. QUINN: AHRQ just released a clearinghouse of care coordination measures, too. It is long but not necessarily what you would want to see.

DR. MIDDLETON: Someone said, maybe you, Judy, we want to know, are transitions of care or handoffs being done efficiently? Do patients fall through the gaps? Are there information deficiencies with transfer?

DR. QUINN: Both from a clinical perspective, based on evidence and other things, but also from a patient’s perspective. Did I leave the hospital feeling comfortable? I was given this new device that I need to use, am I comfortable using it? Do I know who to call that might have questions? Those sort of questions. Do I know when is my next follow-up visit, and does my provider know that I have a follow-up visit with him or her?

DR. MIDDLETON: So there is the patient understanding. There is data exchange and transfer.

DR. QUINN: When I show up to that special list or that follow-up person, am I going to have to explain that I just had surgery and here is what happened?

DR. CARR: As we are getting more electronic, we are piloting a measure to say at discharge can you find a visit with their PCP, because we have the management system now working together with the clinical system.

So I think as EHRs continue to roll out, and with the appearance of meaningful use, we may be able to do things that we were not able to do before, simply by mining the data.

DR. MIDDLETON: So I would maybe highlight the clinical motivation in the second sentence under observation three, Paul. All too often patients are transferred with incomplete information

about their health status.

DR. TANG: Right here?

DR. MIDDLETON: Yes. I am just brainstorming at the moment. All too often patients may be transferred between facilities with incomplete information about their health care. Patient information is not shared effectively between different sites of care. This may be the same thing again. And patients often have an incomplete understanding of their care.

DR. BICKFORD: Do you wish to limit it to facilities? I see that as being a constrainer. We have that same issue when it is transfer from clinician to clinician, from shift to shift, nursing unit to nursing unit. It is not just facilities.

DR. QUINN: I think you can consolidate, often transferred among caregivers or providers.

DR. BICKFORD: I would say among and between.

DR. CARR: Yes, among and between caregivers. They are providers, aren’t they?

DR. TANG: So why is the second sentence different from the first?

DR. MIDDLETON: It is redundant. The only other thing is this patient understanding dimensions. Often patients have an incomplete understanding of their plans and health goals. If you want to introduce patient preferences we can talk about patients’ health goals.

DR. CARR: I think this is good, because it ties in with the accountable care organizations. I think where we are getting very patient specific in the beginning, this is good to keep it at a organizational level. If you are committing to be an ACO, you need to be able to demonstrate these handoffs. DR. WARREN: But there is another piece in there that falls between plans and instructions. These are the therapies that the patient and their caregiver have to carry out where you have no one to help you, whether it is insulin injections or dressing changes.

DR. TANG: Why isn’t that a treatment plan?

DR. WARREN: A plan is a plan. Who cares about the plan? It is the doing of.

DR. TANG: So why isn’t it in instructions?

DR. WARREN: I can tell you to do all kinds of things. It doesn’t mean you can.

DR. TANG: So what would I put here?

DR. WARREN: That is what I am saying. There is an action that is missing in there. Both of those are important. We should know what the plan is, we should know what the instructions are, but an incomplete understanding of how to carry out their treatment, how to perform their part of the treatment.

DR. QUINN: Patients do not often have complete understanding of their treatment plans, nor do they complete all of the instructions.

DR. WARREN: So it is patient accountability.

DR. TANG: How do you sound like you are not blaming people?

DR. QUINN: I had my annual physical, and I was given a thing to do, which I put in my glove box and didn’t do. No one called me.

DR. CARR: And now look at you. How about just implementation of the care plan?

DR. WARREN: There you go, implementation. One of the things that I see a lot, what concerns me about this is, in the area that I live in, and they are all getting old, like in their 80s, when they come from seeing a doctor, I am the one that gets called, that says, I now have to change this dressing they put on me, what do I do?

DR. EDWARDS: You are pushing the care out, where you don’t need to be in the hospital, but you need some knowledge of the person or a friend, somebody competent, who can be there —

DR. WARREN: I can change the dressing in a return demonstration in my hospital bed. I get home, it is all different. I don’t know how to do it anymore. No one has helped me problem solve, how do I organize, how do I lay out —

DR. CARR: I think it is implementation, the implementation of a care plan.

DR. TANG: How do you say it?

DR. WARREN: Just say it. Say implementation of care plan.

DR. CARR: Yes, just use those words.

DR. TANG: Understanding and implementation?

DR. MIDDLETON: That is good. Get rid of all that other garbage, Paul, you are goofing off. I think that is good for three.

DR. EDWARDS: The one we talk about in my survivorship group is this whole thing, like people who have cancer, they have long term sequelae. You want to attract them. By the time they come back as adults, they have no clue what kind of cancer they had or what kind of treatment they had.

So, particularly in that segment. I think it has occurred in the whole spectrum, but it is an area where there is a fair amount of conversation about the medical record and carrying it with you and have the doc know what to do.

DR. CARR: I was going to raise this, where we say between and among caregivers and the patient.

DR. WARREN: Also, cancer has a unique problem, in that most cancer patients, there is not traditional treatment. Most of it is on protocols and research, and it changes dramatically. There is not a, you give this pill and you do this surgery or anything; it is wherever the science is today. So if I come back in two years, probably the treatment that I had is no longer available because it has been superseded by something else, and no one knows that anymore.

DR. EDWARDS: I know it is tailored to cancer, but it is really the conversation that I am hearing about —

DR. MIDDLETON: I think we are covered with the understanding statement now on this point, and the information exchange statement for the transfer issues.

I think Justine just pointed out something, though. Do we want to say — Paul, scroll back up — among patient-provider, where is that?

DR. CARR: Between and among providers.

DR. MIDDLETON: Between and among patients and their caregivers or something. So it is not exactly the right sentence for what you are thinking of.

DR. CARR: You might just say, and often the patient has incomplete information. The patients themselves may have incomplete information.

DR. MIDDLETON: That is right there, patients themselves often do not have complete understanding.

DR. CARR: So we have got it.

DR. MIDDLETON: Let’s go to four.

DR. TANG: Patients often do not have complete understanding for implementation? I’m not doing it right here. There is something wrong. Patients do not have complete understanding of —

DR. FITZMAURICE: Or the ability to implement or follow.

DR. TANG: Or do not implement?

DR. WARREN: Or inability to implement.

DR. QUINN: Patients often do not have complete understanding or do not implement their treatment plans.

DR. CARR: Or capacity to implement.

DR. MIDDLETON: Capacity is good, because it may not be personal, it might be situational.

DR. TANG: Do not for a variety of reasons. Patients often do not have complete understanding of or may not implement their treatment plans.

DR. QUINN: How about, patients often do not have complete understanding of their treatment plans or implement all of the instructions.

DR. TANG: Good, don’t lose that. Patients often do not have complete understanding of their treatment plans, or implement —

DR. MIDDLETON: We don’t want to be too pluralistic.

DR. TANG: Patients often do not have complete understanding of their treatment plans.

DR. WARREN: Or they don’t implement all of the instructions.

DR. WARREN: You ought to be worried about ability, because Matt leaving his stuff in the glove compartment is different than an elderly gentleman who can’t change a dressing because he doesn’t understand how it all goes together.

DR. TANG: Can I use provider here, because we are using caregiver in different ways in this section.

DR. WARREN: Could we do providers and/or caregivers? Caregivers could be spouses, they could be aides that they hire to be in the home. They are non-professionals.

DR. MIDDLETON: Isn’t the caregiver inclusive of the provider, if you will?

DR. TANG: Probably not, no.

DR. WARREN: I think the provider is professional.

DR. MAYS: Can I make a suggestion? Patients often transfer among and between providers with incomplete information about their health care, resulting in a lack of adequate information. It still just sounds like the patients are blamed.

So if you say it is the situation that results in it, it is a complicated sentence, but I am just uncomfortable.

DR. QUINN: You are on the right track.

DR. TANG: Can I get rid of the among then?

DR. QUINN: So patients are often transferred between providers with incomplete information.

DR. MIDDLETON: With incomplete information sharing or exchange, resulting in poor understanding of both provider and the patient.

DR. CARR: We may want to revisit that first sentence. New measures and information are needed to capture the information that is of value to consumers in order to hold the health care system accountable for —

DR. TANG: It doesn’t say much.

DR. CARR: Isn’t it just, new measures are needed, not information?

DR. TANG: How about, new measures are needed in order to hold health care systems accountable.

DR. CARR: Yes.

DR. TANG: New measures —

DR. CARR: Are needed in order to —

DR. TANG: Another statement is, one of the number-one complaints of patients is the lack of transfer of information.

DR. QUINN: That is what the second sentence says.

DR. MIDDLETON: We are getting ahead of ourselves here, because now two sentences are not right. So let’s finish the second sentence or the first sentence.

DR. CARR: So new measures and information are needed in order to insure accountability of the health care system for things that are important.

DR. TANG: To hold the health care system accountable for things that are important to consumers. That is a good statement.

DR. CARR: Patients are often transferred —

DR. TANG: Without their complete information, resulting in —

DR. QUINN: Unnecessary readmissions?

DR. TANG: Poor follow-up.

DR. QUINN: Excessive utilization and poor understanding.

DR. TANG: Excessive utilization and excessive readmission.

DR. CARR: It is poor outcomes, suboptimal outcomes.

DR. QUINN: Just say suboptimal outcomes. That is generic, it covers everything.

DR. TANG: Patients are often transferred with incomplete information, resulting in poor follow-up, excessive utilization and suboptimal outcomes. That is good. This sounds so blaming to me.

DR. CARR: Or patients themselves are often not given complete information.

DR. TANG: Say it again?

DR. CARR: Patients themselves are often — do not receive or are not given. It is not their fault.

DR. MIDDLETON: It is not their fault. Maybe we can say it better.

DR. TANG: Often do not have complete understanding of their treatment plans or follow-up instructions.

DR. QUINN: You could put that sentence before the one above it.

DR. WARREN: Yes, reverse the two.

DR. TANG: No, I think this happened, and this is the result.

DR. QUINN: But the bad outcomes we list in the first sentence are partly happening in the second sentence, too.

DR. CARR: Patients are often transferred between providers without their complete information, resulting in poor follow-up.

DR. EDWARDS: (Comments off mike.)

DR. CARR: This may result in inadequate follow-up.

DR. QUINN: I think patients themselves is redundant. Patients may not have complete understanding of their treatment plans or follow instructions. This results in inadequate follow-up, excessive utilization. This I guess refers to both. DR. TANG: Maybe it is without complete information and often do not have —

DR. CARR: Patients are often transferred without complete information. Patients themselves often do not have — I think that is the point of emphasis. It is not just the providers, you can’t even get the story from the patient because no one told them, either.

DR. MIDDLETON: Paul, I would make the third sentence stronger. This results in, which we know well. So how are we doing on this paragraph? We explain what we want to do, and there is the recommendation.

DR. BICKFORD: There is a problem with the first sentence that you addressed with providers without their complete information. Their, doesn’t reference patients.

DR. CARR: Yes, I know. Without complete information, I agree, we can just take their out. It sounds like providers.

DR. MIDDLETON: Thank you very much. So there is the recommendation. Then anything in the follow-on. In the last sentence do we have to say the NCVHS? Or just say the connection?

DR. QUINN: The key point of the ACL measurement equation is that it is not just cost measures. The patient centered measures are included there so it doesn’t get raised at the bottom.

DR. CARR: Is that last sentence necessary?

DR. MIDDLETON: No. Then the recommendation, and then the close.

DR. TANG: I don’t like this title. It is too long and I don’t know what it means.

DR. MIDDLETON: Yes, I noticed that on the PowerPoint. I think that was too short, that something in between might be better. It is really optimizing the quality measure —

DR. TANG: Create a common data infrastructure for quality measures? No.

DR. EDWARDS: So the other three are a focus on. Do you want to use the same structure?

DR. QUINN: This is a different one. This is the infrastructure. Build a digital infrastructure to support quality measurement.

DR. CARR: So we are building on what we said in the letter.

DR. MIDDLETON: We are talking about efficiency, though.

DR. QUINN: The recommendation is to support —

DR. MIDDLETON: To support efficient quality measurement. Part of the problem is that the left hand and right hand —

DR. WARREN: Quality measure or measurement?

DR. MIDDLETON: Measurement.

DR. TANG: The development of new quality measurement?

DR. CARR: Convene quality measurement stakeholders to formulate a strategy to coordinate development of quality measures.

DR. TANG: How about, build a digital infrastructure to coordinate quality measurement development?

DR. WARREN: There you go.

DR. EDWARDS: Does the infrastructure coordinate?

DR. TANG: Well, it could. Let’s say they aren’t going to continuously meet in the same room, which they aren’t. If they use a common infrastructure, there is a lot of coordination that implicitly happens.

DR. MIDDLETON: I like efficiency, because people can be efficient.

DR. QUINN: In the past, more measures and different measures meant more stuff for the doctor or the hospital to do and more burden and more chart review. So what we want to say is both that we can support not what is easy to measure but what is right to measure, but also that we can do it without excess burden.

DR. MIDDLETON: So if it is burden, it is going to be about efficiency.

DR. TANG: How about a common digital infrastructure?

DR. WARREN: What we have down in the coordination, to coordinate development of quality measures?

DR. CARR: This is a very new topic. Did this come out in the hearing?

DR. MIDDLETON: It was Arnie Millstein, chapter and verse, stem to stern.

DR. QUINN: But also the previous meaningful measure.

DR. TANG: How about a common digital infrastructure?

DR. MIDDLETON: This is not common.

DR. TANG: It is not common?

DR. MIDDLETON: In the web it is not common. The web is the web. It is multi —

DR. TANG: It is both uncommon and not shared.

DR. CARR: So infrastructure to coordinate development. So what is a digital infrastructure?

DR. TANG: We describe it. This is just the title, right? We describe it as standards.

DR. CARR: We are not already doing this?


DR. TANG: No. Every measure developer defines their own data elements and definitions and how to use them, which drives the — one, it makes it not comparable, which is sometimes the point.

DR. WARREN: It increases the burden of collecting the data.

DR. QUINN: The reason that it takes two years to develop the 12 measures for meaningful use, one, is because it takes two years to — everyone has to be —

DR. CARR: But what is the NQF library?

DR. TANG: You mean the QDS?

DR. CARR: QDS, yes.

DR. TANG: That is to make it standard.

DR. CARR: So didn’t we already talk about this in the other letter?

DR. TANG: We did in the other letter.

DR. CARR: So somehow I think we need to connect the dots. We think the QDS is a good start, but we need to do more.

DR. MIDDLETON: It is also two different things. Judy has helped to standardize development of the measure, but we need additional infrastructure which helps to make measure assessment or data acquisition for measure assessment efficient.

We are missing a whole point here. We already talked about how data is not being reused, there are going to be redundant measures and blah, blah, blah. We talk about getting all the relevant data into the measurement life cycle. So it is more than just coordinated development; it has got to be something about efficiently measure quality.

DR. TANG: This is just a title.

DR. EDWARDS: There is a lot more down here. So maybe the title is a little awkward.

DR. TANG: The title is just global.

DR. BICKFORD: You don’t reference digital infrastructure in any of the language. No one has a clue as to what that is.

DR. CARR: We use the term in the title, but we never use it —

DR. BICKFORD: There is no reference to digital infrastructure in your content. You are looking at coordination.

DR. TANG: How about data infrastructure then?

DR. MIDDLETON: It is not just coordinate development of. You have got to say something about assessment. Coordinated development and assessment of quality measures.

DR. CARR: So development and assessment of quality measures.

DR. MIDDLETON: We went from digital infrastructure to data infrastructure.

DR. TANG: It is easier to understand.

DR. QUINN: Coordinate isn’t the only thing. Coordinate is people pushing the giant blocks. To develop the curve was well coordinated, but it was still really hard work. DR. MIDDLETON: The doors will open up in five minutes, and I am walking out.

DR. CARR: What are you trying to say? Build the data infrastructure to coordinate and streamline —

DR. TANG: How about if we work on the content and then fix the title? Is what you said missing from the content?

DR. MIDDLETON: No, it is okay below.

DR. TANG: Then we have just got to fix the title. PARTICIPANT: But there is nothing down below about a data infrastructure.

DR. TANG: So Mike says take out data infrastructure. Coordinate and bring efficiency?

PARTICIPANT: Let your paragraphs talk for you.

DR. TANG: Coordinate efficient development and assessment?

DR. MIDDLETON: It is missing now the systems dimension. Coordinate data systems across the land; has that been reflected below?

DR. CARR: I actually think this is a good title, because it is exactly what we want to do and how we want to do it.

DR. QUINN: Do we want to say prioritization, prioritization and development of quality measures? Relevant quality measures?

DR. TANG: We already did that up in one.

DR. MIDDLETON: So it has got to be underneath the recommendation.

DR. CARR: So what is assessment?

DR. MIDDLETON: That is the doing.

DR. CARR: Coordinating the development of quality measures. What is the assessment?

DR. MIDDLETON: Actually doing it, gathering data from disparate systems to inform new measures.

DR. TANG: That is not assessment of quality measures.

DR. MIDDLETON: Yes, it is.

DR. CARR: Coordinate, development and evaluation?

DR. QUINN: And measurement of quality? Coordinate development and measurement of quality?

DR. EDWARDS: Later on, the second paragraph, you are telling me that you want to support quality measurement activities using health IT. Does that say what the topic is? Then you go and pick up on these other recommendations that talk a little bit about what has gone before. I don’t know, because I haven’t seen those reports. Maybe that is just context.

DR. MIDDLETON: Where we say assessment of quality, efficiency and competency, in the last sentence below, with proper attention. So it does say in there. We might have coordinate development and assessment of systematic quality measures or systematic — I don’t know. It could be okay.

DR. TANG: I think it reads okay. The concept was efficiency of data reuse, and then you explain what would help that, and then you say what does it take to get there.

DR. MIDDLETON: It is 5:28.

DR. TANG: What are we going to do with two minutes?


DR. TANG: I had to ask.

DR. MIDDLETON: I made some notes, and I will share them with the developers. I am happy to help on the quality part.

(Whereupon, the meeting was adjourned at 5:30 p.m.)