Public/Private Partnership & LTSS

>> On to talk about public private partnership.
>> To note, we now have lots of microphones. So they're in the middle and we have the mobile
ones. So that's not to encourage people to talk
any more than they already have because we're behind schedule.
A couple of items we're going to compress. We want to have a brief discussion about the
public private partnerships that are contained in the plan and steps moving forward with
some of them. Some of them as you will note F you're paying
attention during the presentations by the federal officials are well underway.
Some have been -- are well underway conversations that will feed into them presumably well underway
outside of government but this is a conversation about how we start to corral the conversations
and move forward to things we have committed to moving forward with as public private partnerships.
The second item, which is the overview, should -- can be a two minute overview of what we're
doing for the rest of the afternoon. So starting with a public private partnerships.
So in -- if you will all note there are in each of the three areas where we have subcomittees
and -- or doing work, there are commitments to public private partnerships of some sort
of another in the plan. Some of those as I noted are underway, some
are not yet underway. And what we want to do today right now, fairly
quickly is identify a path forward on the ones that are not underway.
And what I'm going to propose to do is to clip through and have a brief discussion in
each of the three areas beginning with research, talk about which -- the public private partnerships
that have been identified in the area. And figure out where we need to sort of add
infrastructure to execute those commitments that were made in the plan.
I want to also identify a process moving forward. So I'm open to suggestions here but for those
public private partnerships that are well underway, if that's an active dialogue, that
exists, between the public side and private side, I don't think we need to do anything
at this point where there is not yet that connection.
What I'm going to propose is we identify the area.
We take recommendations rather from advisory council members as to who other than the Federal
Government ought to be participating in those conversations, and then we will convene the
first meeting and then what we will do is ask -- we will presumably point on the federal
side a federal lead. We will ask the folks on the private side
to appoint I should say a coordinator who we can reach out to to schedule future meetings,
et cetera, who can convene conversations taking place outside of the Federal Government.
But we'll do the first one then we -- it will be up to folks to carry on the subsequent
conversations both on the private side and then obviously the federal side.
Is that -- as a process does that make sense? We will convene the first one and then rely
on the public and non-public members to organize the future work.
So let me start with research. Looking at the plan, there are really three
public private areas of public private partnership that are identified in the plan.
The first is under action 13B, increasing enrollment in clinical trials about other
clinical research through community an national and international research.
The second is 1E-2, leveraging public and private collaborations to facilitate dissemination,
translation and implementation of research findings.
Then there are is an area where we had committed to doing work, has subsequently been envisioned
informally by members of the advisory council and federal side of the public private partnership,
that is in the area of revisiting the path from molecule to intervention so this is the
pipeline issue and that's an area we have identified or committed to doing work in the
plan and I think everyone who has been doing that work recognizes that public private dialogue
is an important piece. So those are the three areas starting with
1B-3, the clinical trials deliverable, Richard, if I can pit President you opt spot a second.
I though that work has certainly been started in that area.
Do you -- I would solicit your opinion as to whether or not an opinion from other FACA
member, we need to sup impose additional public private dialogue structure on that or whether
at this point we don't need to do that.
(off mic)
>> It's a very good point. I alluded to a number of places which partnerships
with successful and they have been deliberately initiated but it would be useful to at least
go through the exercise of developing as you suggest, an outline of the areas useful, populating
an outline of what we're doing already and looking in a comprehensive fashion whether
there's areas moving forward. I think the idea of -- an overview or structure
looking at partnerships across the spectrum of the aim is very appropriate.
>> JEN, did you have thoughts?
>> Yeah. The -- I'm aware of a large scale clinical
trial registry or in general, registry working at banner institute that is very much a public/private
endeavor. The problem I have had as I learn more about
it include how well ethnic minority be included into -- that's embedded plan, embedded in
the legislation about this particular topic that's where (inaudible) influential helping
guide that effort and other efforts to make sure from the beginning that those issues
are integral within the effort. Because right now I think we ear -- the path
to create registries that are very, very similar to the Alzheimer's disease research centers
or ADCs, -- educated English-speaking people and we already have that.
So I think we need to -- and we know from participation in clinical trials in the past,
that's really what we have -- that in ADNY as well.
So we need to do something different and I think our group can be very helpful in encouraging
that kind of investment from both federal and non-federal sources.
>> Okay. That's helpful.
>> Extremely well taken point. There are some examples I can mention where
efforts are being made, not yet adequately successful but incorporatening this overview.
So for example you point out appropriately the Alzheimer's centers have not recruited
an optimal maximum number of minorities. We have funded satellite centers and association
with some of these specifically designed to be in academic senters that have a large responsibility
to and contact with minority disadvantaged populations that has worked but not adequately.
We also have a program as well (indiscernible) resource centers designed to look at the science
in fact of recruitment carrying out research in minority populations in contact with these
recruitment efforts. But to see what we have recognize whatever
we have has not worked optimally yet and design supplements needed.
>> Great. So sounds like we will include that in the
infrastructure we're discussing. So the second one is wanting to leveraging
public and private collaborations to facilitate dissemination translation and implementation
of research findings. Let me ask this question, does it make sense
to all of you who have a single public private working group to address all the research
questions and let them break out another work or organize a couple of potentially three
conversations here? Okay.
Certainly work for me. So let's look at a single group for those
two goals approximate then the additional pipeline goal and let's folks feel -- unless
folks feel strongly that ought to be separated out.
Laurel.
>> There's another place public private partnerships in the plan -- not in the plan per se, a little
like the last one but different. When we're talking disseminating, not per
se research but the annual Medicare wellness visit.
For example, the detection tools into clinical. That's really important to use pub Rick partners
to disseminate so HRSA and Joan down there, we have talked about this, they are key partner
in this but we're going to work together to build the public partners with that effort.
So that medical societies, specialty if physicians groups, public health departments, state -- we
have -- it's not specifically in there but we're seeing that as very important.
>> Right. And Joan is furiously nodding her head, which
suggests to me that would be helpful. So let me ask this question then, maybe what
we ought to do is have identify a public private group for each one of these areas.
Some have specific goals some imbedded in other goals having access to that dialogue.
We could role clinical care guidelines up to a single conversation same way and use
it to work through them where it's helpful and certainly do the same thing in long term
care services and support.
>> You have better visibility on that how you want to organize is fine.
We think it's important to that effort around education in general so we could be -- our
group could be informd by the bigger group say have you thought about this group, et
cetera, we know about this, vice versa. We can inform them of already existing partnerships.
>> Yeah. And in the same way the subcomittees put recommendation
-- make recommendations back to the FACA, we could ask the public private partnership
group to make recommendations back to the FACA.
That is a great a way to handle unless concerns.
>> The way this is phrased facilitate dissemination research findings is a fairly limited view,
if you just posted it on the website. Right?
But it seems to me this goes to the question how you turn evidence based practice or research
into a market adoption. Education, training guidance, but eventually
trying to measure actual adoption of a change in clinical practice or long term service
quality or whatever it is. Seems to me this should be recharacterized
as not only dissemination, but adoption of whatever the clinical long term service recommendations
might be.
>> Which I think would be a great first recommendation coming out of these groups, how you would
tweak it in each particular instance. So I think that's exactly right, certainly
we want to look at these as potentially expansive rather than as opportunities to check boxes.
So yeah, I completely agree. Why don't we do this.
Barring objection we will have a single overarching public private partnership group in each of
these areas and we will use that group to address goals that are public partnership
goals or commitments in the plan. And any opportunities that may arise from
that dialogue which I think is an important piece of this.
>> What about how will this group take into account the recommendations of the FAC?
>> These groups presumably inform the FACA. So there are commitments we have made in the
strategy. Some of those include actually convening these
conversations, some are more specific than that.
But I would actually think of -- so the the national strategy would presumably inform
the conversations of the public private work groups.
And they make recommendations back to the FACA.
>> I am trying to figure out what this circle is -- trying to figure out what circle is.
There's recommendations specific recommendations that the FACA has made that are not in the
plan. You read out what's in the plan but as you're
speaking thinking about all the things we had in our recommendations as well, so I think
-- it would be good to be clear about what this group is -- sounds like they'll be very
busy. It would be great if I think given conversations
we had in each subcomittee about public private partnerships, that they could consider the
recommendations of the FACA as well.
>> So the beauty of these groups is that they could theoretically address anything they
wanted to at the end of the day they're making recommendations back.
I would have a particular interest in making sure at a minimum they address the commitments
that we have made and the strategy. If they are more expansive I think that's
not inappropriate. How is that?
>> I think >> A lot of things we discussed in our subcomittee
and FACA would naturally come up if you convene the right group of people.
>> One point George made on multiple occasions which I think is important, is that if yes
going to hit the goals, execute on the goals -- execute on the goals that we have in the
strategy, we're going to need to look beyond the Federal Government.
So the strategy by and large, is an articulation of the commitments on the government side.
We need additional commitments if we are going to get where we all want to get.
So in that respect, I think it's absolutely appropriate in fact crucial for the conversation
to go beyond those goals. I think that's also part of the purpose of
convening these groups, to look at the goals and how we get there and how we supplement
the work in the national strategy.
>> Just a comment on the pipeline area where I know you want to approach this in a general
way and I concur on that. (indiscernible) president's council of advisers
on -- strong -- (mic cutting out) therapeutic areas, lining the composition of that and
purpose of that an orientation of that, with the goal of doubling the output of therapeutic
products by -- in 10 to 15 years, remarkably close to our own time line.
A lot of issues they identify are relevant to the Alzheimer's issue.
It does seem to me as we move forward in this area of public private partnerships we ought
to think about how in the pipeline area we relate to what maybe a horizontal effort across
all therapeutic areas in terms of improving the speed performance derisking process so
we in a sense become a vertical to what could be a horizontal effort to improve across a
wide variety of different aspects and all disease conditions, so that this public private
partnership relates to that public private partnership in a coherent linked way.
>> The great risk in these is becomes so large and nothing gets accomplished which is my
concern in these situations. On George's last point about the vertical
nature of this, I think that's a very important set of considerations because much of what
needs to be done here needs to be done horizontally, across the space for drug development for
example. We won't resolve that in this conversation
today but I do think it's important for us to consider that as we're putting this together
so that we benefit from whatever else is going on beyond the Alzheimer's space, so we don't
simply assume whatever we do is the only way it could occur because there are so many things
that need to occur that are truly horizontal to drug development translation, that sort
of thing. Again at the great risk that it becomes so
big it goes nowhere which is one of the greatest threats I think we need to keep that in mind.
>> That's a fair point. there's two kinds of problems we need for
public private partnerships. One is adequate investment for research.
Who is going to take the risk. We decided that maybe the government needs
to help private enterprise take the risk or get over the bump and then they'll take the
risk. But then we also talked with sherry about
adoption. We need private public partnerships to help
with adoption because we need to understand how the adoption could be made to be -- fit
local priorities, et cetera. Flexibility.
We need to know what the obstacles are at -- in the workplace -- in the clinical workplace,
partnerships. So we're talking about some very different
public private partnerships and very different uses.
I think it's important to make those distinctions.
>> So I think point well taken and in any of these areas there's multiple public private
partnerships that would be beneficial, where crucial if we're going to make the progress
we're hoping to make. Hearing Harry's point I think probably first
meeting we want to talk about among other things how to facilitate this conversation.
It will be larger than you would probably have it if you were in a position to pick
exactly who would participate and we need to be inclusive.
That's important but it creates additional challenges, as you enlarge the size of a group
you bring priorities and voices. So that's going to be a prioritizing figuring
out how to facilitate three areas is an early deliverable.
(off mic)
>> Public and private precisions and -- (mic cutting out) around the table.
All those -- so -- (off mic)
But I would hope by January we begin to actually -- some intermediate deliverables -- or identify
time based so we charge the public private partnership with with the work plans to get
there. But I anticipate there's going to be hundreds
an hundreds of individual projects and individual co-funding relationships and individual conversations
that will get us there. But I think the pub -- at least as I can see
them, these are public private partnerships to design the overall work plans to get a
set of interim deliverables an to our final goals.
>> So why done we because we're tight on time I'm going the propose a second or make a second
suggestion that we had originally when we originally talked about this, we were going
to solicit from the FACA members and from the members of the public who are here today,
recommendations for groups or individuals who would be appropriate to include in these
conversations rather than do that, why don't we put out some sort of we will ask the FACA
members to email Helen if that's okay, the recommendations.
We will take recommendations from members of the public who are here today and or who
want to follow up. Via email we will reserve the prerogative
to add if we feel like an important group or individual has been omitted.
Any objection to doing that? Our effort is going to be to organize groups
and convene these initial meetings as quickly as possible because this is important work
and we want to get it underway. We will go from there.
Great. The second piece was we're going to spend
some time talking about what we are doing for the rest of the afternoon which is reviewing
the initial recommendations of the subcomittees for the updates, the update if you can believe
we're already talking about updating the plan we put out, it seemed like just yesterday
but in fact wasn't just yesterday. But we will be having three conversations
for the rest of the afternoon. Helen, do you want to talk about timing going
forward after the next couple of meetings and how we will move from the conversation
today to the recommendations of the FACA for the update of the plan?
-- update of the plan. Test test test test test test test test test
test
>> Last year we were curiously riot writing the plan while you were making the the recommendations
and it wasn't exactly the order we should have gone N. so for this year what we have
been discussing was having the advisory council make recommendations about adopt them at the
January meeting. That's January 14th and 15th, to put on our
calendars now but I'll remind you later. So at the January meeting the subcomittee
also bring recommendations more formalized than today to the entire advisory council
for a vote for adoption. And those recommendations will be issued to
the secretary and to Congress. We'll take them into account as we write the
updated national plan. I believe we're thinking that the time line
for the national plan will be April and perhaps coin side with the April advisory council
meeting as well. So this way the recommendations are informing
the update to the plan and the plan will be coming out around the time we have the next
advise arery council meeting so that we can perhaps have a nice event or something to
put it out there. So a lot of work needs to happen on your end
between now and January but I think the ground work is laid before this meeting and should
hopefully make things easy going into the winner.
>> Did you have April dates?
>> The last Monday in April, I think it's the 28th.
But I'll confirm. >> So just to be clear, the purpose of these
three conversations is discussion, there will be no actions that are taken today.
This is an opportunity for the members of the FACA who were not part of the subcomittee
conversations to hear and opine on those recommendations or to add any additional ones that they would
like to ask.
>> One question on the process. At the same time these recommendations we're
discussing today land formalize in January, our date to the next version of the plan as
well, so some will be incorporated in the plan and as such possibly redacted.
>> That's correct.
>> Any room for additions between January and say April?
For recommendation, everything that will be expressed in January will be considered in
the plan but what if some thoughts come between January --
>> New thoughts are always welcome. Certainly and encouraged.
The secretary will take them and make decisions about which to potentially include in the
update to the plan.
>> To follow on that thought, what happened last year, given this year, that things were
a little bit out of sync, the plan -- the recommendations that will go forward to the
secretary and Congress will happen January or in April?
>> January, the plan would be updated between the time the recommendations were submitted
by the FACA in January and when the plan -- the updated plan is put out which is the April
date Helen has mentioned. That's the general idea.
>> Good. Thank you.
All right. Then let's launch into the first subcomittee
discussion of recommendations. Test test test test test test test test test
test test test we'll do long term services and support.
Dave. Who has the clicker?
>> I would like to take the opportunity to thank the members of the long term services
and support subcomittee. It's a dynamic group, it's been a dynamic
process. Very much grounded in the fact that we have
two caregiver representatives in our group. That becomes the filter for our recommendations
and I think that that has really helped us along in the process.
The set of recommendations that are printed in your packet today from the spring meeting
have actually evolved quite a bit in terms of the recommendations from this subgroup.
The slides in your packet give a brief overview, that's also a more in depth the text that
we can make available to folks I don't believe it's in the packet.
>> No.
>> No. But we can make it available to anybody who
is interested. Our recommendations have evolved since the
spring but our sets of priorities have also evolved.
We found there was primary recommendations that moved to the top of the list of recommendations
in terms of implementing others we think state should assure a robust dementia capable set
of long term services and support systems. We're using words carefully here, we're recognizing
that there's a healthcare system, public health system and aging services system, a social
services system, transportation system, housing systems, et cetera.
All of which need some dementia capability within way to move the process forward for
every state to identify a state lead entity to coordinate activities public and private
activities. In all these systems that the systems should
include a full array of long term services and supports that are culturally an linguistically
competent. Evidence informed or evidence based.
Include this list of many services and note adult day services is bolded here.
This came up in our discussions over an over and over again as a primary service that needs
to be available in communities across the country.
Today it's clear to us that availability is spotty at best and knowledge how to access
adult day services is not consistent from place to place.
That is an opportunity for us and something we need to certainly have focus on.
We had a lot of discussion in this particular recommendation about caregiver centered care
management services. The fact that legal and financial policies
need to be addressed in states and communities including family care tax relief policies.
We had lots of conversation about tax relief for caregivers and families who are going
through this experience. As I mention, family care tax relief policies
benefits counseling services. We continue to talk and to some degree talk is cheap, about respite
services and the availability of respite services. That leads us back to that adult day service
conversation frequently too. But respite services continue to be a top
priority for folks. Providers should be utilizing innovative gap
filling and financing strategies. We -- it is clear to us that the same old
solutions are not necessarily going to be successful.
CMS should provide guidance to all states about how to add adult day services as a state
optional service under medicaid. We think that a it's time for a guidance document
from CMS to make that happen. Services should encourage development and
provide linkage to state local private supported housing resources.
When we looked at the 2012 Alzheimer's facts and figures and heard information about one
in seven folks with dementia living alone, that's a pretty scary number.
And we understand that supportive housing can make a huge difference particularly in
the lives of those people. dementia capable transportation services is
also what we see as a glaring potential opportunity for us there is not availability of transportation
services in most places and we think that creates the opportunity for improvement.
Public and private payments for services should reflect a living wage and recognize special
training for dementia capable service providers. So this number one recommendation takes into
consideration many of our other recommendations, this last item is important to internalize
an recognize that until we get to a point where direct care workers in the community
or institutions are paid a living wage, we'll continue to have issues with the quality of
care people receive. Plain and simple.
That's crystal clear to us. We think the living wage issue is one that
needs to be -- to recognize and move forward. Nor to support recommendation number 1, HHS
should fund support to the state lead entity in every state and territory.
And that lead entity should be responsible for facilitating these dementia capable systems,
coordinating public and private resources and programs.
Building capacity for epidemiology, evaluating programs and improving quality.
Maximizing positive impact of services for people with Alzheimer's disease and their
caregivers, reducing any duplication this exists.
Coordinating public awareness efforts and assuring evidence based high quality services
are available. That's a mouthful but it's a nice summary
of the discussion that our group had about this recommendation.
I think that each of us can be reminded of some of the key points there.
HHS should identify an appropriate office or operating division, manage funds for program
supporting the the state lead entities and this is important convene representatives
of state lead entities regularly. We strongly recommend that this happen because
the alternative is state lead entities are left to eventual the wheel reinvent the wheel
50 ways. A tremendous waste of public and private resources
and we think the opportunity for convening representatives of state lead agencies opens
the door for sharing knowledge early on so that we can move the ageneral da forward faster
and in a more efficient way. HHS should develop standards for these agencies
and those standards should be met as a condition of funding.
We all think that money should just be given Willie nilly to states but funding should
be provided to states to support evidence based activity in a planful way.
Understanding that states are all organized differently, standards flexible enough to
accomodate various entities as leads. Some states someone in the governor's office,
somes a state health official. Someone from the aging community.
Other states will have different approaches. Each can be appropriate to that state and
the standards need to be flexible to move us in that direction.
Governors should be enlisted to designate the lead agency of their state.
To ensure appropriate authority is vested with that lead entity.
States should draft or update a state plan to address Alzheimer's disease in concert
with the national plan. It should be supportive of the national plan
but should have specifics for that state. HHS should fully fund cost of cognitive impairment
and caregiver surveillance through the behavioral risk factor surveillance system in every state.
We think this is an important opportunity to gain information we currently lack on a
national basis. In terms of research we said that HHS should
engage all relevant federal agencies to include research on long term services approximate
supports that address dementia capability and research agendas.
We applaud the presentation this morning hearing about prevention research.
That was a big part of our conversation and I for one was very pleased to hear that.
That goes hand in hand with this recommendation. Key information should be in all curricula.
National organizes and state government versus a tremendous opportunity to provide an assurance
that accurate information about Alzheimer's disease is included in curricula for any professional
or paraprofessional who provides a service to people with Alzheimer's disease or who
may come in contact with people with Alzheimer's disease.
This covers the gamut from highly trained if physicians and researchers to paraprofessionals
working in the community, we have seen curricula for people who work in the community.
Employees of utility companies who are reading meter and going door to door.
These are people who come in contact with with people on a regular basis, they should
have an understanding what cog mitive impairment is and recognize signs and symptoms to be
helpful along the way. The tail end of recommendation number one
is laid out in much more detail here. Adequate training and compensation should
be ensured for anyone working in this field. But for particularly direct care workers this
continues to be identified as a major issue. Medicare coverage should be redesigned to
encourage appropriate diagnosis an care planning for people with Alzheimer's disease and caregivers.
We go into some detail here, not going to read it to you but recognizing as we move
forward with implementation of health reform, there will continue to be opportunities for
us to move in the direction of focus on prevention and health rather than treating illness.
Long term service support system should refer people to healthcare provider for diagnosis.
We recognize many of those systems that I mentioned are the first line of defense where
people maybe recognized as potentially having a cognitive impairment and when someone in
the long term services and support system comes in contact with those individuals there
should be a professional responsibility to assure that that person is referred to their
healthcare provider for further assessment. To ensure appropriate training resources are
available to healthcare providers on the use of guidelines that we reference.
The diagnosis should include the individual and family in advanced care planning.
In terms of advanced care planning we're talking health planning, legal planning, estate planning
and financial planning. We did include in our conversation, Jennifer,
as you mention, there are going to be people who present, who don't necessarily have a
support system in place and identifying informal sports for those individuals should be part
of the planning process as well. As a public health professional who has been
in the field for a very long time, I for one was thrilled with other possible plans for framework with
chronic condition, we make that to the framework that's a huge step in the right direction
here but we think that it's important to recognize this population of people with Alzheimer's
disease and other dementias are also the population of people most likely to have other chronic
conditions as Laurel mentionedded earlier, the presence of dementia complicates addressing
any of those other chronic conditions too. We need to include that as part of our dialogue.
We call for quality measures of comprehensive care for people with Alzheimer's disease.
Not a new recommendation but we tweaked some of the specifics here and you can read those.
We think practice recommendations for care in every setting should be embedded in surveillance
and QI systems. We were glad to hear in the report this morning
about the training and retraining of surveyors. We think that's an important step but think
there's more room to move in that direction. Imbedding standards and surveillance systems
for home care and nursing homes and acute care facilities, et cetera.
We think that goes a long way improving care across the board including care around Tran
signatures which is an important issue. Recommendations for end of life or palliative
care should be part of the CMS surveillance and QI systems.
We think this is an area where there remains an opportunity for improvement encourage CMS
to look at that. We call for the CMMI to expand medical home
pilot projects to look specifically at the care of people with Alzheimer's disease or
other dementias. And call on HHS to form a blue rib Bob panel
of experts and the panel recommends one or more models of palliative care for people
with advanced dementia Shah including eligibility criteria and financing mechanisms an grants
through CMMI to evaluate those models. This is an area that has some great potential.
CMMI should implement a new round of grants targeting preventive -- preventible emergency
department visits, preventable hospitalizations, reduce length of stay for individuals with
Alzheimer's. We see from the literature and experience
of caregivers in our group that this is an area there's also potential for improvement
this is another recommendation that crosses systems.
HHS an states partner to ensure access for specific populations including younger people,
people with intellectual disabilities, glad to hear that report this morning, Jane, thank
you. Racial and ethnic minorities at increased
risk of acquiring Alzheimer's disease. We're calling on HHS and state lead entities
to work with providers to assure that supports are tailored for caregivers and family members
of specific populations that we mention. And we have a couple of other specific recommendations
here, one for Congress to amend the older Americans act title 3 to make these services
available to those with younger onset Alzheimer's disease.
This had been a consistently expressed frustration in the field, that there are some services
that maybe available expect someone is too young to access them.
Recommendations for use of currently proposed 10.5 million in federal fund by administration
on aging. We call on HHS to use fun by state grants
creed to support dementia capable long term services -- capable services and supports
across the systems we talked about and we echo some of our other recommendations.
We also point out that we think the funds necessary to fully fund all states action
plans is it is point about $85 million. That should be enough money to support both
a level of federal activity and nexus of activity in every state lead entity so they can have
a presence in everybody state to lead these efforts.
The ADSSP should be restored to $13.4 million funding.
This was the pinnacle of funding and I believe it was in 2003 that -- is that right?
2003? I think around 2003.
And we just think it should be brought back to that -- this is a valuable program that
many people benefit from and should be funned at a more reasonable level than currently
is. We also think that caregiver support should
be fully funded under AOA, national family caregiver support program.
A component of which could be expanded to better meet if the needs of caregivers of
individuals with Alzheimer's disease. These improvements result in mitigation of
other systems costs. Certainly when we find when caregivers are
well supported, system costs in other areas definitely are impacted.
Our recommendation is the program funding be doubled to move toward full funding.
Physical and behavioral health risk is assessednd addressed regularly.
We think there are opportunities including health information technology as health reform
rolls out in states across the country, when we look at the essential health benefits and
exchanges, et cetera, there's lots of opportunities to embed in these new activities or expand
existing activities to include this kind of assessment and support for caregiver physical
and behavioral health. The fiscal and behavioral health risks to
caregivers have been well documented. Now it's time to address those and provide
some supports. Along that line the office of national coordinator
for health information technology could be engageed in this process to develop tools
to assist caregivers to organize care, educate them about dementia and multiple chronic conditions
and provide tools to maintain their own mental and physical health.
Access to reminder tool, communication methods among caregivers, home monitoring tools an
enhanced decision supports to instill confidence and reduce isolation.
This theme of isolation is one we hear over and over again so anything we can do along
the line to reduce that feeling of isolation among caregivers would be helpful.
We are aware of the report that hunter Mckay gave at last meeting nationwide public awareness
campaign, Alzheimer's.gov website, we think that's a great beginning but only a beginning.
We are acutely aware that in a few weeks there will be a huge gap on television where we
need to replace political ads with something and we think that this is an opportunity to
engage networks and cable providers et cetera that fill some of their gaps with some of
these high quality pieces that have been developed so far, encourage HHS to move in that direction.
That was as quick as I could get through.
>> Thanks, Dave, very comprehensive. Let me ask a question.
This set of recommendations is a combination of what you had last time, where you need
to go, and things that are partially in the plan or not in the plan at all or --
>> We tried to make an effort to put together a set of recommendations this time that incorporated
the key elements of the last set of recommendations we made.
In any instance where we were touching on something that was already in the plan, these
recommendations we think take that steps further. so we try not to repeat anything already in
the plan but either make enhanced recommendation or take a couple of steps further.
>> Comments, questions?
>> I'm going to (off mic)
The question I guess I have is there any way to begin to lay out a timetable (inaudible)
this recommendations things beyond the plan. There's an awful lot here that needs to (inaudible)
set of execution steps and -- be involved in various stages of (inaudible) responsible
for ensuring intermediate metrics are achieveed and the like.
Having said that, my question is, is there any way to begin thinking about (inaudible)
execution points?
>> Great question. We had a lot of conversation about this both
phone calls an email traffic back and forth. Our recommendations at this point push the
envelope not to the degree of stretching credibility. We recognize the environment that we're making
these recommendations in. For example, we made recommendations about
the 10.5 million and indicatedded at some point that should be at least 85 million to
support state lead entities. We don't say we want 85 million now in recognition
of the fact that if we look at current law we're looking at sequestration right after
January 1st there,'s no way we're going to hang on to the 10.5 for that matter.
None believe sequestration will happen, we're hopeful it won't happen.
At the same time we thought incremental recommendations made more sense.
We made recommendations about the 10.5 and we said here is where we need to be.
We can take ta a couple of steps further. We can say maybe we need to be at the point
of funding state lead entities at $85 million in five years.
I don't know. I'm not sure what a reasonable time line would
be but I'll take that back to the group and have more conversation with that.
That's just one example but lots of other pieces, some of our recommendations tie in
to implementing health reform so 2014 might be the key to making some of those things
happen. Your point is well taken.
>> You're saying all of this is conditional -- you're leafing the impression all the execution
of this is contingent upon congressional funding. Divide the 85 million by 50 states, it's a
million and a half to $2 million per state. Why can't states begin to fund some of this?
What are the other things that can be done within existing begin to roll down this pike
in terms of trying to set up education programs or you have a lot of guidance and tool development.
So is all of that simply dependent upon congressional appropriations?
Is there not other things that can be done with existing state and federal budgets?
>> There are definitely things that can be done with existing budget resources.
As we reconvene our subgroup we'll look at those and I think your point is well taken,
coming up with some metrics and making these recommendations more time-specific and identifying
the entities who can make those things happen will make a big difference.
>> Maybe one of the great recommendations for this area and also as thinking about the
clinical piece as well as maybe one of the core recommendations should be some sort of
assessment, exactly what are the dollars required to provide immediate care for the population
we presently have. Try to determine what those expenses would
be going out. It does come down the cost but not sure any
of us have a good handle of what that looks like.
Not the say that should be at -- a detractor but we should look at it realistically and
say this is what we need. How do we get there.
>> One of the things we're trying to do with healthy brain initiative in terms of developing
a road map is to step back and say to states where are we today and what kinds of things
we can implement. So for example, to get to these things to
try to identify best practices that even exist around states to understand where state entities
would be like the national chronic disease directors associations and others to say what
kinds of things, I think it is George getting at what you're saying in terms of what steps
can we take immediately that we can begin to engage in to be begin to look at surveillance
systems. In terms of chronic disease management, we
know some things about how that dementia impacts other chronic conditions.
There's many things we actually don't have a very good evidence base about and so what
work can we do given existing resources that can be brought to bear.
One of the things that we are doing is to look at this state level to try to act on
those with the idea taking this kind of national view and goal in the longer term to look at
that. Because I think that's very important.
We're having a meeting tomorrow. Many of you participated in that stake holder
meeting to look at those kinds of next steps. We hope soon to be talking about what are
some of those very practical next steps the state level we can take.
Understanding that they'll have a touch point to these national plans.
>> Thanks.
>> Thank you. Dave, I want to commend your group, very other
thorough recommendations. I see similaritys from what we talk about
with our clinical care group. I have just a question maybe to Don and Helen.
As we draft the second national plan will there be updates related to progress made
on the first set of recommendations in terms of the progress made with first set as well
as additional recommendation?
>> There are a long with the national strategy put out in May, there's -- or included is
implementation strategy that also includes a time line.
So there are attached to each of the action items in the plan there is a responsible entity
and a date. The conversation we had at the beginning of
this meeting was an update from the federal work group leads essentially reporting back
on the progress and the major action items either due between the last meeting and this
meeting or forthcoming we have talked about whether we continue with this structure going
forward or do it slightly deferentially. That's somewhat open question still, the thing
I will tell you is that we're committed to however we do it means transparent with the
FACA how things are going. So we're also quite independent, I mentioned
this before, tracking this, we're working on a master tool that we're launching shortly
in the department to track this electronically so we'll be able to report out how thicks
are going at any point in time. Anything that goes into the plan by way of
update presumably requires update of the implementation strategy.
And time line with it. I should also add because this came up on
the research subcomittee call, there was a question whether or not the implementation
strategy itself was fair game for comment from the FACA.
The answer is certainly yes. It doesn't mean the sect will make recommended
changes to the time lines that the FACA might make but she will certainly take them very
seriously. So as you have thoughts about the implementation
side, I think that's appropriately part of this conversation as well.
>> I would encourage you to think about including success with the first year of the national
plan, what success did come about through the effort.
Even if incremental toward goals and objectives, it's important --
>> As part of the tax identifying things that happened first year that were team milestones.
I actually think that's a really nice suggestion.
>> Maybe to expand a little bit, part of your question was the recommendations.
The recommendations are separate. They're operate from the plan.
If anybody is going to monitor success on recommendation, it's us.
>> That's correct. Insofar as recommendations not included in
the plan. There are a few.
We tried to -- as you'll note, the vast majority of the recommendations in the first year of
the F ACA were included in the plan, not all were.
But we are tracking the national strategy, not the FACA recommendations.
Let me ask whether it would be appropriate for you or the secretary to indicate which
recommendations you didn't accept and why. So in fact we know what recommendations if
it's based upon resources, that's an easy answer.
Some is based upon timing. We don't know what we can do to this, that's
another. There could be some -- we are ooh just banging
our head opt wall and the secretary disagrees with the course action we're recommending.
I find it useful if I had a summary of why it is the secretary did not accept a recommendations
that we put forward.
>> So we have those conversations informally. In the subcomittees for example, where there
are conversations about what went in, what didn't go.
In federal members have been clear about why things didn't make it in.
I have to say that in the vast majority of instances, it is in fact resources.
That is the single largest constraining factor. There's a couple of places where there's policy
disagreements but most disagreement -- most instances where something wasn't adopted it
was a question of just limitation on resources. I don't know -- we can certainly entertain
the possibility of putting together some document, we'll go back and look, I'm not sure it ultimately
would be helpful document to have, to put together because in most of the instances
that have the reason. if there is -- if there are individual questions
about particular recommendations that is certainly fair game for -- I would hate to have derail
the work we do today but that's certainly an appropriate conversation for either research
subcomittee meetings or for F ACA meeting like this one.
>> Just clarification on part of Helen's question, your comment around the monitoring and recommendations
that would cover, I would take the position that most monitoring of recommendations is
whether or not they make it into the plan as a practical matter.
And then just a follow-up question in terms of the reporting and progress of the legislation
actually act -- actually requires an update on the problem.
So each year we would have an update to the plan as well as a published progress report
to go with that seeking clarification on the intent you have to fulfill the act.
>> I actually think what we do, what we have been doing at each meeting constitutes the
progress report. So we will have that -- we will certain -- we
can certainly go into more detail on an annual basis but what we have been doing is identifying
key milestones or deliverables and updating the FACA through the report you her this morning
about where they stand. We have a conversation, the leads and Helen
and I before each meeting, one of the questions that they put to you will of them is there
anything in the implementation strategy we're likely to miss, anything not on track, if
there is we need to identify it in this meeting so we have been doing that as well.
I think at a point in time annually, it probably makes sense to go into some additional level
of detail. But we have been cognizant of not wanting
to turn this whole effort into essentially a report back out.
That is the constraining factor. I'll also add when we get our tool up and
running and can do this electronically, I'm hoping that we'll be able to cut down on the
time that we have to take in the meetings for updating because you have paper.
We'll be able to print out what is essentially a report and then you can -- you can -- someone
like Richard or sherry or Jane would identify key pieces that warranted calling out in a
special discussion. You could identify something that upped to
go deeper on but that has been the general approach.
I think it's much more effective to do this on a rolling basis rather than an annual basis.
>> Trying to decide if I agree with your last comment, Don.
At least in terms of origination of the set of ideas that makes up NAPA, I would tell
you my own suspicion is there's an annual update to the progress.
>> This is looking back on the ledgelation and not the national strategy.
Your concern could be presumably if some gap between execution of the goals in Napa and
delivery of the commitments that were made in the statute; is that the concern?
>> We are down that level -- I don't want to bore everybody with but my expectation
has been recognizing all the reporting that's occurred at this meeting and previously that
we would on an annual basis have a progress report that will -- it's a little like the
order of things Helen mentionedderrier in the origination of the recommendations and
the plan in the highest theoretical sense the progress report might inform the subsequent
plan, not sure in the real world it exists exactly that way or if it lags a bit into
what would be subsequent plans in terms of progress that's reported perhaps simultaneously
with the updates of the plan. Be open minded about that part of it.
I think the idea, what you describe in terms of the electronic reporting system, Don, might
ultimately deal with this in the sense that at that date they ask about the time of the
update, the plan release there would be available a progress report on what has occurred under
strategy of the plan deriving from the legislation. So that's been my expectation at least that
we would have that sort of plan. Progress report.
>> The thing I'm a little challenged by is so in my mind the plan -- execution of the
plan is successful implementation of the law. So the goals in the plan are what I regard
are right goals to successfully implement NAPA.
To the extent they are not I think that necessitates a revisiting of the very goals themselves
but insofar as that's what they are, what we have been trying to do is say true to commitments
made in the -- stay true to the commitments in the plan.
>> I don't doubt that. The only disconnect is whether or not there's going to be a progress
report annually I'm not questioning that what should be reported in the progress against
the plan but what I expected at least is that we would have that progress report on an annual
basis that would deal with the plan.
>> We can I think the key is thinking through the difference between that and the real time
reporting that I Ohio the real time updating that I have described and the reporting through
the tracking mechanisms we have been setting up quite independently of the reports back
from the federal work groups. I'm certainly open to having that conversation,
the caveat is what I don't want to do is create additional frames of reporting for the federal
work groups because the thing I care most about is they're spending their time implementing
the plan rather than reporting back. In my mind the balance we're striking and
having them here talking through what they have been doing the last quarter, how things
are going, identifying things that have gotten off track in talking through both why and
how to get them on track is the way to go. If there's a different way I'm open but just
to make sure we're doing that in a way not creating new reporting requirements but rather
improving what we have got.
>> With you in terms of not taking time away, the valuable limited time, all people at Federal
Government level working on these things to see them implemented.
I'm with you all the way in terms of not disrupting the accomplishments but the reporting of them.
At the same time there's value in knowing at the point whatever point in time on some
kind of basis. What does the time line look like again?
I know the detail on the electronic reporting system to when that will be available to capture
what would be the progress even if on a rolling basis captured at any date X
>> Internal tool we used to self-manage that we will use to basically print a report, it
will be that we will have printed copies of point in time snap shots there.
We are beta testing starting in November internally depending how that goes could have something
ready to go by the end of the month so my hope is potentially we're in a position to
use it for the first time at the next meeting, if not almost certainly at the subsequent
meeting.
>> On that basis it's to roll something out that would effect actively be what I have
been expecting additional reporting.
>> It will be on a more -- I'm sorry, on a more micro level because it will be literally
a report on the action steps and strategy.
>> Micro would inform the macro, the would not necessary -- opposite is not necessarily
the case.
>> I have a slightly different question, that goes to the nature of whether or not we're
reporting progress or just activity. Most of what we received in these meetings,
what we in the business are calling activity report.
We have done this, we have done this, we have done this.
I back up and say how do we know we're making progress so in my case the goal of stopping
the disease by 2025, so how do one relate activity to progress thus, comes back to my
mind whether or not we have identify ad series of steps which in the aggregate through time
produce the results we want to achieve. Thus CMS stuff by the next meeting having
a notional time based strategy where steps might occur.
We ought to do that in the research work group so we begin to say, progress means we take
these steps, subsequent steps an tertiary steps.
We get to the result, not just we have done this, we have done this, we have done this.
>> I think Harry, when you're describing the two, that's I think a lot of what you had
in mind also, taking one step back and looking at the relation between delivery or execution
on the plan and larger goals. I will say this.
In the first iteration of the plan, that represents our very first collective effort to identify
steps you would need to the extent that we know them, identify steps you want to take
if you hit goals an plan. So I done know there is a silver bullet behind
all this that would emerge if we step back. I do think it is a conversation we need to
have on a regular basis and annually is as good as any time.
But the first plan exactly where we -- what that was and hopefully the second plan will
be a little deeper dive on that. We will know more, we will have accomplished
some of the things we have set out to accomplish and probably hopefully have a better sense
of the other things that we need to accomplish to get to the goals.
>> I think the only thing -- >> I certain with what George pointed out,
those larger things are things that naturally we want to monitor, especially over longer
periods of time. The shore run here, I monitor my staff in
terms of activities towards end points because you done measure some of the activities as
well, you don't know if you make progress required you just indicated.
That goes together and certainly over time we're looking at bigger stuff though that
will accumulate of course and the near term I think seeing those activities is totally
understandable.
>> One way to summarize some discussion, if someone were to come and say is this plan
working, is it making any difference? We can site activities but are we getting
there. Short run, it will be difficult to see.
I think a narrative as to how we're getting there.
>> We shall probably wrap this up. One quick one for Dave.
>> Just -- I have got this. So I think probably some combination of recommendation
that I heard from Helen and the recommendation I'm hearing from Harry and George probably
make sense. So we can conceivably include in the narrative
of the plan a bullet, a discussion of some of the major accomplishments and probably
an articulation of the relation between execution of the plan and ultimate goals that are laid
out in the legislation. So I think there's probably a way of weaving
that into the plan going forward. We can talk about whether that makes sense
or make Morris sense to carve out. But I think we certainly would be open to
both of those things.
>> A lot of emphases of your group is on state led activities.
Have you gotten feedback from the state in terms is this something they would like, in
general I mean you can speak for New York but what about the other 49 in terms of do
they think this is a good way to go?
>> Yes, one hat that I wear is I am a board member of the national association of chronic
disease directors so folks in state health departments that run chronic disease prevention
and control programs, NACCD has a healthy aging group that I have spoken with on a number
of occasions about recommendations about the concept of a state lead entity.
I reached out to the aging network in New York and state level folks at the state office
for aging and asked them to have these conversations with their counter parts and verseally the
word has come back if we take this approach recognizing every state is different and every
state may have a different place for state lead entity, there's agreement there needs
to be a state lead entity and someone needs to have authority to convene and help coordinate
these activities on a public and private basis.
>> Thank you. Okay.
I think we should adjourn for lunch. Let's do about a 35 minute, we'll start at
quarter to 1:00. We're going to flip-flop the order of the
presentations this afternoon. Clinical first, research second.
Has to catch a flight. So let's start again at 12:45.