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All right. Then let's turn to the next item
which is the discussion of the 2014 recommendations and
timeline. And I'll turn to Helen and Don a
little bit on this. For our new members, 136
congressman, Jennifer, our task, in addition to working on the
national plan itself is also the generate a set of
recommendations that will be considered for inclusion in the
2014 version of the national plan given the updated annually.
And if not, if they do not make it into the plan, we pass these
forward to the secretary directly and to Congress
directly as well. So it's a main task and an
important issue we deal with and last year we had 39 or so
recommendations that we put forth.
So part of the discussion is how we proceed from here.
One approach would be to see how we did with regard to the
recommendations last year. That is, scorecard of, was it
included in the 2013 plan? If not, why not?
Is it realistic? I think there is some issue that
is we put forward put forward and some issues we give it a
shot and we have to drop back on some of shows.
-- some of those. My own personal view on this is
that perhaps 38 recommendations are too many.
For the consumers, the Secretary, I'm sure, reads them
all but for Congress, I wonder if we might not have a greater
impact if we were to pair these down into several essential ones
that we think are absolutely vital that our advocacy groups
can take forward to Congress and and emphasize them more
strongly. On the other hand, we don't want
to overlook issue that is need to be extricated. 137
So, I'll be looking to our three subcommittee chairs, Jen, Dave
and Laurel, to convene their committees over the next few
weeks or so. Our next meeting is January or
February 3. So we need to convene in January
and I ask the groups to look at their individual recommendations
and do score keeping exercise. I think Helen can help us with
some of that with regard to, is it in the plan in one fashion or
another? Maybe not completely.
And then we have to discuss where we go from here with each
of the items. But I would try to consolidate
if at all possible. I think fewer that are more
finely focused are beneficial. But open for discussion.
Jen? >> I agree that 38 sounds like a
lot but we can't take any of the research ones out.
[ Laughs ] >> Next.
>> So I'm sure that each of the committies will be dealing with
the same thing. So maybe we can look across
different recommendation to find way toss bullet out issues
within one general recommendation?
I don't know if it will work but maybe we should give that a shot
this time and I wanted to say last round the research group,
and you'll see it fairly high up on the number, I think it is
number 2 or 3 or something about intermilestones and maybe no
mystery who is primarily behind that it wasn't really easy to
do. And I don't know if you want to 138
say something, Richard, but it has become a key part of how I
understand what is going on in the research area and you saw
the appendix where it list all these interim milestones.
It's become integrated with the plan in a way that I think is
great and what thought this time to throw it out there is that
maybe this should become a general thing for all of the
subcommittees. I mean, when Shari and Jane
presented similar questions were asked about what is the
timeline? What are the milestones?
What are the -- what would mean success in this area?
So I'm wondering if all of the subcommittees could unite to
have milestones by the time February or it seems very soon.
But and the advantage that the research group had was that we
had just had the summit. The may summit that really was
something we could all rally behind and sort of name through
the recommendations made in that summit and milestones.
I think it would be an advantage for the whole council not just
the research group. >> If I could.
A couple of just a couple of process observations and timing
and then I wanted to respond to Jen's suggestion.
So for the folks who are new to the advisory council, the
Secretary is the one who is ultimately charged with writing
a plan. Legislation directs her to do
so. She did that.
It also directs her to update the plan on an annual basis. 139
She has done that and will continue to do that.
This body, one of the functions if not the primary function, is
to advise her on the writing of that plan and then on the
subsequent update. So we have now I think, fallen
into a very nice calendar or I should say, we had fallen into a
very nice calendar. Where we would have a
preliminary discussion in the fall, the subcommittees would
meet and then we would come back in the spring in January to
reconvene and discuss the recommendations of the
subcommittees which ultimately translate into the
recommendations back to the secretary we had a meeting
scheduled during the government shutdown, this meeting now.
We had a conversation -- by we, I mean Ron and Helen and I had a
conversation about whether we should readjust forward
everything or try to keep things on the schedule.
The thought it made sent to -- sense to try to stick to the
schedule because we wanted the timing of these recommendations
coinciding with other dates like budget and submissions to have
maximum impact. We are staying to the schedule
but it is somewhat too significantly condensed time
period for the subcommittees to get-together to make the
recommendations. For what it is worth, I think
that the milestones suggestion is a very good one as Strategic
Planner. I will say that milestones are
important and I think they have been helpful or my sense is they 140
have been helpful in thinking through the research objectives.
Certainly they would be helpful in the other two areas.
I think potentially what you could do if you're trying to
both accommodate condensed timeframe and make progress
towards milestones is identify a few key milestones or some sort
of number of achievable milestones just in the
development of them and add them with the understanding that
because we do this on an annual basis, you can certainly build
on those. But, to get in the habit of
identifying milestones is probably a really good idea to
ask the other two subcommittees to have milestones that are as
articulated as the ones in the research subcommittee might be
pretty big ask. >> As one of the strong
advocates for the milestones and the research subcommittee I
agree. I love to see milestones in the
whole plan. But as it has been said with the
recent of the summit at the time, we had some benefits.
We might certainly defer it to Dave and Laurel and their
groups. It would be possible to consider
even prioritization is tough in that kind of a turnaround time
but maybe areas of emphasis that could go with milestones to the
degree you can do them on a limity basis as Don indicates.
Anything that ultimately goes in the direction of what Jim is
proposing. I certainly support to the
degree that then it could be accomplished in the kind of turn 141
around time that you have got, which is short.
But certainly anything that -- I will say that having those
milestones in the research side of the plan has been especially
helpful on the advocacy side beyond this panel.
ExR. and beyond the considerations of the secretary
and looking at the plan. And credit to the seconded for
having the milestones in the plan.
And to Richard and everyone else who worked on that.
So I think there are gains to be had.
So unlike most advisory councils this don't just go to one person
in HHS. They're go to Congress and I
think the advocacy groups would say this is a strong advocacy
government. -- document.
So I think it is helpful to have recommendations to Congress and
to provider system and states. But perhaps we should structure
it differently so those are pulled out.
So in addition to cutting down the number, we might think about
different twice structure them or organize them so that folks
know what is relevant to them. We could have high-level pointed
in the beginning about what the major recommendations are for
each of those. And then it's clearer for what
is responsible for what going forward.
>> Back to the milestones issue for a moment.
There may be able to split the difference.
Several people commented that the summit informed the 142
milestones. The summit represented the
gathering together of the key stakeholders in the research
endeavor to inform this and then that made the work better.
What we haven't had that here. We haven't had key stakeholders
which includes and dementias and families and caregivers.
We haven't gathered them together to inform what the
priorities are on the service area along services and
supports. And it might be that while we
could come up with a few sort of important milestones for early
next year, we might think about a process like the summit that
helps to inform a broader view. >> I would like to take issue
with that. The long-term care commission
had several hundred commenters and lots of public comment and
that record is available and that was from people who were
not experiencing the system very well and from exerts and
advocates and a much broader community.
So I think there was a body of material out there that can
serve as a basis. And the subcommittees don't
write the milestones. We just urge you to.
And so this is something by February seems to me one can
pick out where these milestones might be useful to recommend.
We have another summit which will be another input to the
research subcommittee and for consideration by that
subcommittee as to whether some of the output of this most
recent summit. I think we have interesting 143
outside work that can reflesh the secretary matter of
recommendations. And so I think while the
schedule is compressed, I would urge full bore on these
milestones. And maybe it will take a process
and it may not all come out in the third addition of the plan,
but boy, Shari offered up for the next meeting to do some
milestones on some of the CMMI and other stuff.
Let's just pick off stuff where there is real stuff where we can
move forward. And I think in terms of, this is
a little off topic but for the next meeting, I think it would
be great if we had someone come in and do an analysis of the
drug pipeline. It's one thing to do the
research milestone and another to lay out on a map.
When the Phase II and 3 drugs will read out, it will give us a
real reality check on whether or not we are on the path for
prevention of effective treatment by 2025.
>> So, I think milestones are a good idea.
From the perspective of a practical approach to the next
few weeks. The long term services
subcommittee is committed to look at the recommendation of
the long-term care commission. We have a draft crosswalk which
we put together where we will look at our form of
recommendations and the long-term care commission's
recommendations and find common ground and maybe take the
Commission's recommendations a step further. 144
So that is one piece we will look at.
We are going to take your advice, Ron and look at our
previous recommendations and see if there are ways they can be
consolidated in some way, maybe there is some that come off the
table and maybe there is some essential thing that we need to
put on the table. We also committed to develop a
research Agenda for long term services and supports that will
be part of our recommendations to the Council in February.
So adding milestones to that process, I am feeling a little
bit like maybe the two or three conference calls I thought about
scheduling need to be every other day from now until the
first week in February if we are going to do that.
I think that we will keep it in mind and when we can use
milestones, we will. And I think that is a good
guideline for us to have. But to assign that task to
subcommittees, ting is a little over the top.
>> It took one page. I mean, you have to debate it.
And obviously you have to work with your public sector members
to understand what a subject of milestones and what they are
prepared to do. But in terms of assessing
whether or not that milestone is valuable, I don't think there
should be much debate at all. A question of what work process
you put in place over what time period to get to them.
So, this is not for the subcommitting I it's not so much
a heavy lift. In terms of talking about 145
subject matters. >> George, I think we happy to
recommend there be milestones but having those milestones and
having reasonable milestones that are achievable I'm not sure
we are going to get there by the first week in February.
>> I don't think that's the timeframe on which they will be
developed. >> As a reminder, in the hard
copy you should have and if you don't I I still have it.
We have the timeline for each of the action steps.
It's not arrogant chart like Richard had and we could do one,
but we do have for the CMMI grants when they were scheduled
to start and end. A lot was ongoing.
So I think if the subcommittees could identify the ultimate
goals is to have a long term services and support system that
is responsive to the individual consumer and their family
members and caregivers, and these are the steps we see to
get there, the interim steps, if the subcommittees had time to do
that and to lay that out, that could be something that could be
addod top of it. In terms of the timelines for
the activities in the plan, we already have those so let's make
sure they are meaningful milestones that add to what we
have already done. And if I could follow that.
I think for one thing, at fleet my perspective, while
accountability is important, I'd say to our federal colleagues
around the table, this is not a gotch ya game.
For me, this has most to do with what our outcomes as opposed to 146
even -- I'll with you in terms 689 timeline.
But I think what is important is outcomes.
Not just action steps. Because the measurement of
outcomes when I'll just use myself as illustration, I'm
talking to members of Congress when I'm not on a day when I'm
paid with the Federal Government.
Just to be absolutely clear. What is important then is where
we are going to get to, given what is being done today.
And that again is not a gotch ya game on what Richard or his
folks are doing on what NIA has available as research resources.
It is about what is plausible in outcomes given substantial
underfunding. So I think the parallel applies
and I just reiterate the idea and I think you're on this track
that I think even areas of emphasis are helpful to get at
the kinds of things that any of us that do the kinds of thick I
do on occasion, can use that kind of thing asiged indication
of where the thought leader experts sitting around this
table are when it comes to what they think ought to be done.
Because I rely on that to be able to have those conversations
so any additional assistance with that in addition to what
winds up in the plan is highly beneficial to the conversations
that occur. And I know you do that yourself,
Dave. >> We are all squared away then?
You lost me on that -- marry you lost me on the point, paid by
the Federal Government. I didn't get that part. 147
Laurel, any comments from your end?
>> I just had one comment both just to appreciate the dynamic
around milestones for my subcommittee.
Very challenging and I listened and I will see if we can't reach
towards that in a meaningful way.
I would just adds we have a wealth of information from the
process of the Alzheimers association did in Townhall
meetings throughout the country prior to the Napa or right
around the time of the Napa legislation and I think there is
some nice summary documents of what a stakeholder, person with
dementia, families and caregivers and prioritized as
far as going forward so we could reach back into that without
maybe doing a new effort in that regard too:
>> And we have the hard copy of that too.
>> Okay. Further comments?
We have Marching orders for the next meeting in February.
We'll have conference calls no doubt over January all right.
We are sort of catching up here but Don, we missed your remarks
this morning opening the meeting so I thought we would leave some
time for you to share with us a few thoughts.
>> Thank you. I wanted to let folks in the
room know that effective the end of the year, I will be leaving
federal service, which also means sadly that I will be
leaving my -- what do you call this?
Role here. I will say it is it's a lucky 148
thing to serve in the administration and I feel very
blessed for having been given the opportunity of the things I
have worked on. This is among the most rewarding
that I have worked on. It has been really inspiring to
watch all of you and I can say that everyone around this table
and all of the folks who are here and who come consistently
and provide public comment have really built something that I
think is important and meaningful and I am just
tremendously lucky to have played a role in it.
I wanted to single out a few people just because I think you
do that. Laurel and Jen and Dave who were
the chairs of the subcommittees and Jane and sharey and Richard,
who were the chairs of the federal subcommittees you all
have done tremendous work when Helen and I came together to
start to try to plot out how to move forward on the federal
side, I think we really came at it having no idea other than
having done some vaguely like this in other areas and it is a
credit to the three folks who I just mentioned that they have
all been running and built really great initiatives and
have worked really hard. There are many, many people who
you have never seen who have been working on all these
initiatives and it is to the credits of those three people
they managed to make sure all that work happens and we have
almost on every occasion, the timelines that they committed to
making. And that is hard work in 149
government and it is to be applauded.
I also wanted to give special thanks to my colleague Helen --
[ Background noise ] -- is the person who does all of
the work we hind this and when I say, all, I mean all.
She writes the plan. She has put all of the thought
into the structure of this. When we get stuck she figures
out how to unstick us. And she is just done tremendous
heavy lifting and had a child in the middle of it.
And kept everything moving flawlessly and then also to Ron
who is as wonderful a partner as you could ever imagine having in
anything. You are so freshmenly lucky to
have him as a chair. In addition to being absolutely
trustworthy, he has a tremendous judgment and able to taken
incredibly complicated things and make them seem so simple.
And it's a skill you don't see in people often.
He is humble and good and we are so lucky to work with him.
And so thank you. I do -- give all yourself a
round of applause. And keep up the great work you
have been doing and thank you for letting me be a part of it.
[ Background noise ] >> A couple of weeks ago, I was
glad for you but sad for us because I think not only have
you been our liaison upstairs to the boss, and would give us the
real pulse of what is going on at HHS, but I saw over the last
two plus years how you have grown to become invested in this
cause. I think that it was just another 150
task probably when both of you started but now I have really
become invested in this as part of your own interest.
So it has been fun oddly enough, with our virtual weekly phone
calls but also I don't want become too efusive here but you
too have been able to read the pulse of this group and I think
there is a lot of different personalities and a lot of
different individuals all moving in the same drug benot
simultaneously. And you have been able to
perceive that and it's not easy to do.
And I really enjoyed the last 2 1/2 years and hope we can keep
in touch in future activities. So --
>> Probably everyone around this tableitute say something about
Don. But Don has been a special
person during this whole process.
He stabilized us at the outset and he kept us so that the train
on the tracks. And he has done it with a great
balance and I would say you have done great judgment.
A great spirit about you. And I think you are going with
the Commonwealth fund a great place and I wish you all the
best in the world as you go forward.
[ Applause ] >> I like to add picking words
very carefully as a federal employee.
That although we, speaking for NIH, I have the highest respect
for our administrative bureaucracy.
That the relationships are not always as special as they have 151
been here and at times on rare occasions when I may hear of
conflicts or issue that is relate to the agencies.
I share the fact that there is nothing but positive, productive
and even mostly enjoyable relationships with the
department through Don and Helen.
It's been extraordinary partnership and I wish for the
Federal Government that these relationships were more typical
than they are. So thank you for leaving Helen
with us and I'm so sorry will you have to leave.
>> Not being in the Federal Government, I can say whatever.
And the first thing I'll say is we haven't figured out that
thing about Helen doing the work.
Just kidding. The fact is, that this could all
go differently, right? We could go through the process
as we did the Association of Working on getting the
legislation done and getting all that to happen and working with
all that occurring, good people around the table and all of that
could occur and this could still very differently.
We got a lot of work to do. We got a long way to go.
There are way too many people who have this disease today.
Everybody sitting around here know that is.
But this has gone pretty well as things go in my view.
And that is of no small part because of you, Don.
There is a culture even in the group credit to everyone here
for the nature of the crullature that exists but that is because 152
of the way you handled that in your important role to this and
I agree with Richard we are glad that hell sen staying.
I'm sure that all of us agree. We could not be happier for you.
But, for us, collectively and the cause, when I personally
heard that you were leaving, I felt bad for the cause.
And please don't miss understand that because I feel absolutely
great for you in terms of what I know is a great opportunity.
But, you have provided such great leadership to what has
been a space where we have not advanced as far as we need to.
Particularly at the Federal Government level, that you made
a huge difference in that and I know whether is it is personally
or on behalf of my organization, we truly appreciate that.
I personally appreciate it. We will do our best to go on
without you. It won't be the the same.
>> Thank you. And again thank you again.
I think then we can turn to the public comment section and I'll
turn it over to Helen. >> Before we do that, I just
have one item to follow-up from this morning.
We missed our discussion wrapup from the morning speakers.
And having had a little bit of time to mull over the morning,
which by the way I was thrilled to hear the three speakthers
morning. I thought it was very
informative all three of them gifted individuals and had a lot
of good information to share with us.
I think it is going to be a challenge for each of the three 153
subcommittees to incorporate what we learned today and to our
recommendations moving forward but it occurred to me there is
one area that is crosscutting across the three subcommittees
and that would be the issues associated with ethics that we
heard through all three peoplers -- speakers this
morning and I propose consideration that we may want
to have an ad hoc committee simply to look at ethical issues
that are crosscutting across research and clinical care and
long term services and supports because I think it would behoove
us and behoove the issue not to be dealt with three separate
times in three separate ways but rather collectively.
>> Thank you very much. I agree with you.
I think that say very important topic and we touched on it with
regard to issues of privacy and the likes so let's take that
under advisement and put something like that together.