(playful piano music)
- [Voiceover] Hello, my name is Dana Hughes.
I'm a health policy researcher at
the University of California in San Francisco.
Throughout my career, I've been concerned about inequities.
Who gets health care and who doesn't
and why the haves typically
get better quality care than the Have-Nots?
The US Healthcare system is considered
among the best in the world,
but there are enormous gaps in care.
What we call Health Disparities.
In this country if you're poor,
or if you're African American,
Latino or Native American you are
far more likely to have chronic
or disabling conditions,
far less likely to have access to needed healthcare
and far more likely to die prematurely.
As researchers, my colleagues and I typically look
to statistics to answer these kinds of problems.
We pour over numbers,
search for trends and relationships,
and we hope to find evidence
in the numbers that point to the solutions.
But this time we decided to use a different approach.
We wanted to learn directly from those most affected.
People living on limited incomes,
older people, people with disabilities
and people with chronic illnesses.
And we wanted to hear from the advocates
and the health care professionals
who work with and for them.
We went to six states, eight cities
and talked to 47 people.
And here are their stories.
- I was diagnosed with Sarcoidosis back in '93.
And it took them forever to diagnose
because they wouldn't take me seriously
about my breathing problem and long story short,
I was told to lay down and rest and you know.
I just wasn't taken seriously.
If I'd have listened to them
I wouldn't be here now.
- Well I had a patient recently
who was in the hospital and was discharged to home.
With no preparation for her home return.
Her only caregiver was her son,
who was not a young man himself,
since his mother was 98.
And he started providing care for her
in her home to try to help her recover
from the pneumonia.
And she was not making it.
So I said, "Bring her into the office
and we'll see what we can work out."
And it took about three or four hours
of effort with the insurance company
to convince them to let her come in
to a nursing facility.
- My wife was immobile from October of 2010
'til December of 2012.
We never did discover what happened.
We suspect that there might have been a mini-stroke.
And it was like the straw that broke the camel's back.
She has been immobile since that day.
If I had a magic wand here's what I would have done\u2026
Rather than the government of the State of Ohio
and the Federal Government passing notes
back and forth to each other,
they should have had an advisory counsel
of consumers like myself in the very early stages
because my contention that the weak part of this program
is the insurance companies really
do not understand what burden we have.
I don't think they have a clue.
They're nice people to talk to on the phone,
but have they actually--
With my magic wand I would like Aetna, Molina
to take care of my wife for a day.
- Looking at the data locally in San Diego,
as far as health disparities
as far as improvement in health status.
Certainly we have seen some over the years,
but disparity still exists.
Disparities are still significant
and it became clear to me that as a practicing physician
if I was truthful about it,
I wasn't making the impact that I had hoped I would make.
And not just me, but I think physicians in general.
And I began to embrace the change
that I saw in medicine of trying to incorporate
not only the physician, but a team approach.
Because what I recognized was that although many
of my patients have health insurance
many of my patients have access to a physician,
have access to health coverage.
Because of the social barriers that exist
they may have access but they lack financial resources,
educational levels to help navigate the system
and negotiate the system that it
was very fragmented and actually causing
them to receive poor care.
- [Dana] In 2013, Atlantic Philantropies
funded three national organizations
to find ways to address these kinds of problems.
Those organizations are Community Catalyst,
National Partnership For Women
& Families, and PICO.
Their common approach?
Ensuring that consumers are at the table
when critical decisions are made about how
health care is delivered and who has access to it.
They work especially hard for the inclusion of people
who face the most serious health problems
and have the least access to healthcare.
People living on limited incomes,
older people, people with disabilities
and people with chronic illnesses.
Each of these organizations is committed
to ensuring that health care reflects
the needs and preferences of these populations,
and supports their health and well-being.
Over the course of three years
they worked directly with consumers
to help give them the tools to sit
at the decision-making table.
They also offer technical assistance
to health care providers and health plans
and advocated for policy change
at the Federal, State and local levels.
Here's more about their work.
- Comprehensive Primary Care Initiative
is really focused on quality improvement.
How do you improve quality?
And there are a couple of ways to do that,
or to get patient input in doing that.
One is to do patient surveys which we also do.
All our patients are surveyed after
they have a visit at our clinics.
But the other way is to do it from
a patient and family advisory counsel format.
So that you actually have a group of patients
that give input, partner with you
to making quality improvement changes.
- We have a model of community organizing
that we use that involves
helping individuals, in this case patients,
really connect to their own story
and their own experiences
and learning how to use that story
and tell that story in a powerful way
to people who are in power and actually have access
and resources to change some
of the structures and the
situations that these patients
or people find themselves in.
- If you, as a consumer, want to get involved
and you want to help shape this delivery system,
you must be willing to share with not only me,
but with the state and with the plans
what's working for you and what isn't working for you.
Voice your concerns.
If you are comfortable advocating for yourself
and for your loved ones, for your peers,
sit down with us and let's shape
this new delivery system.
- [Dana] We learn from these amazing people
about the differences that consumer voices can make.
Through this project the interests, needs,
and preferences of patients
and their families were not only heard,
but were incorporated into decision-making
about how health care is delivered.
These are just some of those stories.
- I can remember a time in our past where
there was even a reluctance to administer surveys
because we'd be afraid to learn
what we were doing wrong
or what we might be able to do better.
And I think that...
the experience has really changed people's attitudes
and our provider's attitudes toward that.
And I think it's because the patient/family
advisory counsels have created an environment
where our patients--
It's a safe environment for them
where they feel that they can be honest with us
and the feedback they give us is frank,
it's not mean-spirited in any way.
And a lot of it is actionable,
some of it may not be for a variety of reasons.
But I think that it's actually been refreshing
for our practitioners to hear what
they're doing well and to learn what
maybe can be done better.
- [Voiceover] Can you give us some examples
of what is a hot topic?
- Of most recent I would say the biggest topic
that our counsel has been successful with
is really trying to talk about advanced directives,
or end of life care.
So the most recent meeting was how to disseminate\u2026
how to have this conversation with patients.
We were asking for their feedback.
You would think that it come as part
of a routine physical,
but it often does not.
And oftentimes it is found in moments of crisis
where patients are at a moment
of making important decisions
and there has been no conversation made.
- [Voiceover] Do you have any notion
of the difference that you're making
here in Allentown?
- I want to say I do. (laughs)
Working with the patients and observing for ourselves
the turn-arounds that are happening in their lives.
The sense of accomplishment that the patients are having.
The sense of purpose and significance,
that they are valued, that they are members,
valuable members of our communities
and that they're not alone;
that people do care for them.
And I think when the patients realize
that someone has taken up an interest in them,
is really working diligently to help them
have the best life possible,
have a good quality life and improved health.
Then we see the patients really
taking some more responsibility
and feeling like it's okay.
We've given them the permission, it's okay.
And the response and the feedback
we get from the patients is very
encouraging and inspiring.
It says okay, you're doing well. (laughs)
It's working.
- [Dana] There are enormous health disparities
in this country but this doesn't have to be.
There are answers and they start
with involving consumers in helping
to identify the root causes of the disparities
and in finding workable, long-lasting solutions.
- I feel that,
the best way to get
to the Senators and everyone else
is for us to tell our stories.
What difficulties we're having.
What we like and what we don't like
about what's going on.
- You have to understand that we, too
are human beings.
And as we too are human beings that means that
if we want good people in government,
if we want the system to change,
if we want the system to work on our behalf
that means that we have to get involved.
(happy, playful piano music)