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Remarks by Maria Carolina Hinestrosa
Town Hall Meeting at the AHRQ 2007 Annual Meeting
September 27, 2007
Good morning. Thank you very much, Carolyn, for inviting me to represent the
National Breast Cancer Coalition at this Town Hall. And thank you all for being
I'm going to tell you just a little bit about the National Breast
Cancer Coalition so you know the context of where my remarks come from. We
are a National grassroots organization that has the very bold mission of eradicating
breast cancer. And the work that we do we do through three main goals: research,
access, and influence. Our organization is a coalition of organizations—about
600 organizations from across the country—all independent organizations
that represent the diversity of breast cancer at every possible level that
you can think about.
So that really makes us a strong group, a very passionate,
motivated group that understands the complexity of this disease, the burden
of the disease, and that is committed to making and pushing and being influential
in change —in
obtaining change at many levels.
The approach that we take, and really the
cornerstone of our philosophy to all of this, is evidence-based health care,
patient-centered, public policy, patient-centered, research patient-centered
care, and very important to be sure that we have a consumer voice is represented,
that the consumer voice is there, and that the consumer is a decision-maker,
also, at all of these levels—research, access, and the public policy.
as I talk about research, access, and influence, people know us probably more
about the work that we have done in our accomplishments in the research area.
When we started our work, in this in 1991, investment in breast cancer research
was about 80 or 90 million dollars a year. And it claims the number of lives
that it claims, about 40,000 lives then and about the same now. So we said
to change that, to make sure that the Federal Government really invested the
right amount of money on breast cancer research. And we don't, even
as we have been very successful at doing that, just one program alone that
we really pushed and created and continue to be very closely involved with
the cause, appropriated with 2 billion dollars of breast cancer research, but
it is not just throwing money at the problem. It is how we do this. And so
we make sure that not only do we have the funding, but we are participants
in the vision-setting for that program and creating the right mechanisms in
the scientific community to do that research, pushing for innovation in breast
cancer research, challenging assumptions, relating it to new paradigms so that
we can really move forward to eradicate this disease.
And so, central to that
is the consumer influence—what have we done
about that? Well, we have trained our members to really understand the concepts
and the language of science so that they can really participate in the vision-setting
for research, understand the scientific causes, participate in developing mechanisms,
reviewing proposals, participating in peer review – really be collaborators
at every level, also collaborating in research itself, not just a subject of
That – we were not invited to that table. We didn't
have the scientific community come and tell us, have the scientific community
tell us okay, "Get the money now, come sit with us, and give us priorities." That
didn't happen. We really pushed our way and persuaded the scientific
community, through the hard work that our members do, that we are a valuable
partner and that we really have an important voice, important perspective to
present, and that in challenging the scientific community. it is a situation
that really helps us move forward.
So, we are applying that same approach to
the work that we do in quality. As I mentioned, research and then access is
one of our major goals. We set a priority from the beginning to ensure that
at some point, and hopefully soon, this country moves to a system of guaranteed
access to quality health care for all. And this is a very active area
of work that we have, and you will hear more about that from us.
So, in the
area of quality, we actually thought that was going to be an easy job. We thought
research would be sort of scientific research and biomedical research would
be hard and quality was going to be the easy thing. Well, we didn't know
much about that [laughter] and so we found that it really is, we didn't
know what we were talking about in quality and we realized that a lot of people
didn't know what they were talking about in quality
too, so we really felt that we truly had a contribution to make in this area.
on, in 1999, we developed, set to define, what quality care means from a patient
perspective and came up with a framework of core values. And our core values
are: Access, Information, Choice, Respect, Accountability, and Improvement.
So those were set up in 1999, then we set to work to say, "Okay,
well that's nice, but what do they mean? What does that mean?" And
so, some people in the room have really been working with us, helping us get
to the next point. Core values now, how does it translate into ways to assess
the quality of care? So we developed our "Measuring What Matters" project
and recently held a workshop to bring those core values into, as close as we
can, to indicators of measures of quality. We also thought that, okay, well
it's going to be, we could see a very clear path. Core values, measures,
and then do the work.
Well, we all know that measures are a very challenging
effort, and it is a moving target. So what we really set out to do is to train
consumers, and this is a very important part of our strategy—to educate
consumers the way we did in the research and the biomedical research world,
train consumers on the concepts of this world. What are the concepts of research
in quality and health services research? Are the concepts of research that
this field that they really need to understand to be influential; to be able
to dialogue, participate, and push their research agenda? And once we do that,
then these people will be able then to participate and push for systems change
so that we can achieve improvements in the quality of care.
We developed, twelve years ago, a program that is called Project LEAD, which
again features the concepts of science to consumer advocates. Because we felt
that if we were going to claim a seat at the table, to influence the research
agenda, and to influence what are considered to be science in this country,
we really needed to understand what this is. So we have trained over 1,300
consumer advocates in this field of basic science and epidemiology and all
of these concepts. And that cadre of consumers, we really has transformed the
way biomedical research is done in cancer, breast cancer in this country. And
so we're set to do the same in the quality care arena. And we really
look forward to working with those of you who are, all of you in this field,
we have a network, a nationwide network. We developed a quality care project
that still is evolving. We are going to have the fourth offering of that course
in the month of November and, again, what we want to be covering in that course
is to train these consumers to be at the forefront, influencing change. We're
teaching again the concept of the field, the basic language or, rather, methods
that are utilized to assess quality.
We are working on getting deeper into those
core values that we developed, and we did a lot of work on what is important.
As we were looking at measures of quality around those core values, the first
question was, "Why do we care? Why is this important?" And why is it important
to measure in each of these areas, in access and information and in choice, respect, accountability,
and improvement? And we really did a lot of work in advance there, but again,
unfortunately, we don't have the answers. We do understand that this
is a moving field; there is a moving target, and we need to be careful about
settling for what is easy to measure.
I hear a lot about the low-hanging fruit. "We need to go for that." Well
maybe that low hanging fruit is, I don't know, rotten or whatever [laughter].
So, we really need to be looking at where are we putting our efforts and what
is important, what is meaningful?
And I'm going to just leave you with
some of the concepts that came out of the workshop that we did recently on
measuring what matters, to tell you what consumers…what a patient-centered
and consumer-led effort, what did it get us. And we are grateful to the collaborative,
the work and the time and effort that many other stakeholders spent with us,
helping us get to that point. And they are engaged with us in moving forward
So in the area of access, this is where we are in our thinking
right now. When a person needs medical care, she can get that care without
any trouble, because care is affordable, provided regardless of ability to
pay, timely, physically accessible, and evidence-based. When a person needs
information, she can get it without any trouble, because information is available,
complete, correct, and understandable.
Now in the area of information,
providers explain and discuss each aspect of the diagnosis. They propose treatment
planning with the instructions for home and self care, levels of evidence,
potential benefits and side effects, and cost of treatment. They also explain
other evidence-based options, and they give information about relevant medical
trials. In addition to their information, the patients pick treatments likely
comprehensive, provided in writing, updated, shared with other providers, and
coordinated by one principal provider. And, also the area of information, the
person's medical record is complete,
correct, understandable, owned by the person, shared with all her providers,
electronic, and interoperable, and it is protected.
About the core value of
choice. A person has autonomy in decisions about her care because she is the
decisionmaker. She may delegate but retains autonomy throughout the process.
The provider integrates each person's preferences
for involvement in deciding her treatment plan, and the health system accommodates
those preferences. The system has in place a simple process to choose among
different providers, obtain second opinions, learn about and participate in
clinical trials without penalizing the patient.
In the area of respect,
providers in the system will routinely assess and appropriately address a person's
psychosocial needs and cultural context, will communicate relevant information
as quickly as possible, use the person's
time efficiently by minimizing waste of time or eliminating wasted time, and
assess and appropriately address a person's pain. Also in the area of
respect, privacy is protected during medical encounters in all forms of communication
with providers, in all original electronic records.
In the area of accountability,
the person gets the right care at the right time because treatment options
reflect consistent evidence-based guidelines; patients make the ultimate care
decisions after receiving full information; providers receive feedback on errors
and non-compliance with evidence-based guidelines. There also a system
for meaningful public reporting that documents informed decision-making by
the person, extent to which the health care/health plan covers evidence, health
plan covered decisions are evidence-based, extent to which providers' recommendations
are evidenced-based, medical errors even when no specific harm results, extent
to which patients revisits are easily communicated and appropriately addressed,
and performance of providers, care facilities, and health plans.
And lastly, in the area of improvement. The system works towards developing
higher levels of evidence. All players in the system are engaged in action
plans for improvement in the systems of care, and the public is provided specific
and timely information about how errors and mistakes are being addressed so
that care improves. Thank you.
Current as of July 2008