Consumer Voices for Health: How to Promote Better health Care for the Underserved

Consumer Voices for Health: How to Promote Better health Care for the Underserved


(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 doneu2026 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 disseminateu2026 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)

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