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Purvi Patel
JD/MPH Class of 2010
Tufts University School of Medicine
Department of Public Health & Professional Degrees
Master of Public Health
Applied Learning Experience (ALE)
Project Title: Implementing a Human Right to Healthcare: A Qualitative Case Study in Lewis &
Clark County, Montana.
Project Site: National Economic & Social Rights Initiative
Preceptor: Anja Rudiger, Human Right to Health Program Director
Community Presentation: available at http://www.slideshare.net/patelpurvip/qualitative-research-
on-health-as-a-human-right-in-lewis-clark-county-montana
Abstract
Lewis & Clark County, Montana is home to approximately 60,000 Montana residents, many of
them concentrated in a few small towns, such as Helena (the state capital), Augusta, and Lincoln.
The best available data indicated that 21% of county residents live without health insurance.
Furthermore, residents without health insurance experience serious lack of access to healthcare,
factors that contribute to serious health problems such as increased risk of dying from cancer,
serious complications and worse clinical outcomes for chronic diseases like diabetes, cardiovascular
disease, and mental illness. On December 4, 2008, the Lewis & Clark County Board passed a
resolution declaring health and healthcare to be a human right for all of its county residents, and
creating a task force charged with conducting a countywide health needs assessment to investigate
ways to implement the new mandate.
To assist with the county’s health needs assessment, this project (working with NESRI) sought
to evaluate qualitative focus group data gathered from Lewis & Clark county residents regarding
current access to healthcare, quality of services, and barriers to receiving or seeking care, as well as
opinions on the notion of health and health care as a human right. Qualitative research was
conducted by NESRI and the Montana Human Rights Network (MHRN) through eight focus groups
in four towns within Lewis & Clark County between mid-August and early-November 2009.
Groups ranged in size from two to fourteen participants, with a total of 47 participants. Focus
groups sought:
1. To identify how sample populations (rural, uninsured, underinsured, etc.) use health
services;
2. To identify barriers to accessing health care;
3. To identify unmet health needs;
4. To solicit recommendations on what measures the county should take to move toward
universal access; and
5. To obtain feedback on the Board of Health’s resolution
IRB exemption was sought and granted because analysis consisted of evaluating de-identified
qualitative data from focus group transcripts. Group-by-group demographics were gathered through
the use of participant monitoring forms, and aggregated to provide an overall picture of research
demographics for the project. Over half of focus group participants were between the ages of 45-64
years; none of the participants fell between 35-44 years-old, which was seen as a short coming in
the sample groups researchers were able to recruit. Education level was fairly well distributed
among participants, however about two-thirds or participants had $50,000 of income per year or
less. Almost two-thirds of participants depended on employer-sponsored or governments-sponsored
(i.e. Medicare or Medicaid) plans for health insurance; around one quarter of participants were
uninsured.
Qualitative data was analyzed according to a human right to health framework, looking at
themes of access to care (costs and financing), availability of services, quality of care, and dignity in
treatment. Participants of all groups except one (Augusta) were also asked to discuss whether they
believe health and healthcare to be a human right. Participants offered a range of suggestions for
the county in the areas of expanding health care services, particularly primary care, improving care
coordination, improving the navigability of the health system, improving transportation, and
expanding financing options. Based on these findings, we drafted preliminary recommendations for
reform to the Lewis & Clark County Health Task Force.
Problem Analysis
Lewis & Clark County, home to Montana state capital Helena, hosts 60,925 residents,1
21% of
whom currently live without health insurance – which amounts to thousands of individuals.2
In
2006, it was estimated that 12% of the Montana adult population in general was unable to visit a
doctor due to cost.3
Such data suggest serious complications and worse clinical outcomes for
chronic diseases like diabetes, cardiovascular disease, and mental illness.4
Montana is also ranked
highest in the country in the number of completed suicides.5
In Lewis & Clark County specifically:
 Almost 29% of people in Lewis and Clark County live below 200% of the federal poverty
level (FPL)
 21% lack health insurance
 7% are on Medicaid
 54% of Community Health Center clients were uninsured in 20046
As the 2008-09 debate over national healthcare reform grew increasingly contentious, many
state and local governments increasingly felt compelled to respond to the health needs of their
residents. Based on statistics such as those above, and in the shadow of the ongoing debate over
health reform, and the fierce arguments over a potential national pubic health insurance option, the
Health Board of Lewis & Clark County in Montana approved a resolution in early December 2008
recognizing a “basic human right” to healthcare for all of its residents7
.
To comply with the new county health care resolution, the Lewis & County Clark County
Health Board created a locally-grounded Task Force on local Access to Universal Healthcare
charged with assessing the health care needs in the county, and to make recommendations about
implementing the new healthcare mandate. The Task Force is currently developing an action plan
for providing access to universal health care in Lewis and Clark County and moving toward a
universal, equitable system. To this end, the Task Force is expected to produce a final report of its
recommendations by March 2010. Based on the task force’s recommendations, the county Health
Board will then try to design some a plan or system that provides universal health care for the area.8
In the words of one Helena city commissioner and Health Board member, “[the Board] said, ‘Let’s
see what we can do to change the debate, and maybe end up with some solutions that we don’t even
know exist at this point.’ ”9
Description of the Agency and Partners: NESRI & the Montana Human Rights Network
As an initial step, the L&C county health Task Force sought the assistance of the Montana
1
Lewis & Clark County population statistics, 2008. Available at: http://quickfacts.census.gov/qfd/states/30/30049.html.
2
Mike Dennison, City-County Health Board proposes universal health care. IR State Bureau, HelenaIR.com, Dec 12, 2008.
3
Lewis & Clark County, 2009 Leading Public Health Indicators, Lewis & Clark City-County Health Department, 13.
4
Draft resolution available at www.nesri.org/.../Local_Universal_Healthcare_Resolution_Final_December.pdf.
5
Lewis & Clark County, 2009 Leading Public Health Indicators, , 12.
6
Health and Health Care in Lewis & Clark County: An Initial Data Review. Human Right to Health Program, NESRI / NHeLP, 18.
7
Dennison
8
Dennison.
9
Dennison.
Human Rights Network (MHRN) and NESRI to better understand the needs of county residents
through a health needs assessment.
National Economic and Human Rights Initiative
The National Economic and Social Rights Initiative (NESRI) promotes a human rights vision
for the United States that ensures dignity and access to the basic resources needed for human
development and civic participation. Towards this end, NESRI works with organizers, policy
advocates and legal organizations to incorporate a human rights perspective into their work and
build human rights advocacy models tailored for the United States. NESRI takes a partnership
approach to building a human rights culture in the United States, and prioritizes partnerships at the
community level.
Preceptor: Anja Rudiger (NESRI)
Anja Rudiger is the Director of the Human Right to Health Program, a joint program run by
NESRI and the National Health Law Program. Ms. Rudiger works with state-based coalitions to
develop human rights approaches and tools for health care reform efforts. She is an expert on
human rights and equality, specializing in policy analysis of disparities in the exercise of civic,
economic and social rights. She has extensive experience integrating a rights-based approach to
policymaking at local, national and international level. Previously, Ms. Rudiger carried out
consultancies for governmental and non-governmental organizations, led the research department at
the British Refugee Council in London, and managed the UK Secretariat of the European
Monitoring Centre on Racism and Xenophobia. She received her Ph.D. in Political Science from
the University of Kiel in Germany.
Collaborators: Montana Human Rights Network
Based in Helena, the Montana Human Rights Network (MHRN) is a grassroots, membership-
based organization of over 1400 members. MHRN’s mission is two-fold: 1) To promote
democratic values such as pluralism, equality and justice; challenge bigotry and intolerance; and
organize communities to speak out in support of democratic principles and institutions; and 2) To
challenge hate groups and other extremists who use violence and intimidation as tools for political
activism.
Methodology
To implement a countywide health needs assessment, the partner agencies began consulting
with community members and collecting their suggestions for improving access to care. Based on
the belief that community members’ health needs and ideas for improvement can best be explored
through qualitative and participatory research, the Task Force and its partners decided to implement
use of a qualitative research component to the assessment through focus groups with community
members. Through focus groups, the Task Force hoped to be able to get useful in-depth information
on barriers to access, diagnose specific issues that need to be addressed, gain views on potential
improvements, and build awareness and support within the community for the planning phase of
project.
[rest of Methods section truncated]
Using a Human Rights Framework of Analysis
Initial drafting of the focus group protocol used basic tenets of a human rights framework to
guide the questions asked of participants. The human rights framework protects civil, political,
economic, social and cultural rights. Each right recognized under this framework adheres to basic
principals that are always part of human rights standards and implementation. These principals
include universality, indivisibility, participation, accountability, transparency, and non-
discrimination.
Data gathered from the focus groups was analyzed under a human right to health framework,
which assumes that the purpose of a health care system is to protect health of each member of
society. As such, its design must be guided by the following key human rights standards:
 Universal access: Access to health care must be universal, guaranteed for all on an equitable
basis. Health care must be affordable and comprehensive for everyone, and physically
accessible where and when needed.
o Affordability: Health care must be affordable for everyone, with charges based on the
ability to pay, regardless of how health care delivery is financed
o Equity: Health care must be distributed equitably, with resources allocated and used
according to needs and health risks.
o Comprehensiveness: Health care must include all screening, treatments, therapies
and drugs needed to preserve and restore health, including reproductive health.
 Availability: Adequate health care infrastructure (e.g. hospitals, community health facilities,
trained health care professionals), goods (e.g. drugs, equipment) and services (e.g. primary
care, mental health) must be available in all geographical areas and to all communities.
 Acceptability and Dignity: Health care institutions and providers must respect dignity,
provide culturally appropriate care, be responsive to needs based on gender, age, culture,
language, and different ways of life and abilities. They must respect medical ethics and
protect confidentiality.
 Quality: All health care must be medically appropriate and of good quality, guided by
quality standards and control mechanisms, and provided in a timely, safe, and patient-
centered manner.
The following principles, which apply to all human rights, are also essential elements of a health
care system:
 Non-discrimination: Health care must be accessible and provided without discrimination (in
intent or effect) based on health status, race, ethnicity, age, sex, sexuality, disability,
language, religion, national origin, income, or social status
 Information and Transparency: Health information must be easily accessible for everyone,
enabling people to protect their health and claim quality health services. Institutions that
organize, finance or deliver health care must operate transparently.
 Participation: Individuals and communities must be able to take an active role in decisions
that affect their health, including in the organization and implementation of health care
services.
 Accountability: Private companies and public agencies must be held accountable for
protecting the right to health care through enforceable standards, regulations, and
independent compliance monitoring.
Results: Participant Demographics
Of the 47 participants, across eight focus groups, over half (57.1%) were between 45-64 years
of age. Not a single participant fell into the 35-44 years-old range, reflecting a gap in our sampling
pool. Participants’ education levels were considerable more varied. Three quarters of participants
who responded about their education level had either a high school diploma, an associates degree,
or a bachelors degree. An additional 20% of responding participants had obtained a graduate
degree, while 5% had not finished high school.
Over two-thirds (almost 70%) of participants made incomes of $50,000 or less. In 16 of those
cases (41%) cases, participants made less than $15,000 per year. Of those who had health care
insurance at the time of the focus group, about 37% had employer based insurance, while over 39%
had government sponsored program (i.e. Medicare and Medicaid, excluding coverage through the
Department of Veterans Affairs). About one quarter of participants (24) were uninsured.
Racial or ethnic discrimination was not a big issue. The vast majority of participants identified
as US-born Caucasians, with two of the participants identifying as Native American, and one
defining as a naturalized America citizen from China. As a result, racial or ethnic/discrimination
was not as much of a concern as economic disparities between participants.
Groups Conducted (8 groups, 47 Participants)
Group Date # Participants
Experts 8/17/09 3
YWCA 8/17/09 7
Canyon Creek 8/19/09 2
Lincoln 1 8/20/09 2
Augusta 8/25/09 13
FoodShare 10/13/09 10
Lincoln 2 10/14/09 3
Helena 4 11/5/09 7
Gender Percentages
Male Female
40% 60%
Residency Status
(Unknowns excluded) number percentage
US-born Citz. 45 98%
Naturalized Citz. 1 2%
Immigrant 0 0%
Race/Ethnicity number percentage
White 45 96%
American Indian/
Alaskan Native
2 4%
Education no HS Diploma
HS/GED
Associate's
Bachelor's
Graduate
Education Level
(Unknowns excluded) number percentage
no HS Diploma 2 5%
HS/GED 14 34%
Associate's 4 10%
Bachelor's 13 32%
Graduate 8 20%
Income
< $20,000
$20,000 - $49,999
$50,000 - $100,000
$100K+
HouseholdIn come
(Unknowns excluded) number percentage
< $20,000 16 41%
$20,000 - $49,999 11 28%
$50,000 - $100,000 9 23%
$100K+ 3 8%
Average Age = 52.0 years-old
(Unknowns excluded)
Age Range number percentage
18-24 years 2 5%
25-34 years 5 12%
35-44 years 0 0%
45-54 years 11 26%
55-64 years 13 31%
65+ years 11 26%
Health Insurance Status
Uninsured
Employer-based
Gov-sponsored
Individual
Other (e.g. VA,
parents)
NOTE: some participants had more than one source of insurance
Insurance Status
(Unknowns excluded) number percentage
Uninsured 11 24%
Employer-based 17 37%
Gov-sponsored 14 30%
Individual 6 13%
Other (e.g. VA, parents) 5 11%
“Some of the doctors, that are listed in the yellow pages, they’re full. I’ve been having trouble finding a family
doctor because I was going to one, but I can’t see him anymore. I’m trying to find a new one, but the people that
people have been referring me to, they’re full so they won’t take any more. And I stopped looking, but I’ve had
that happen a few times.”
YWCA Focus Group
Results: Key Findings
GENERAL OVERVIEW
Availability of health care– lower income residents generally felt there was a shortage of service
providers in the county. Rural residents felt this particularly acutely. Low income residents also had
difficulty finding health care providers. Higher income residents experienced fewer problems with
finding service providers, with the possible exception of in-county mental health services.
Access (Cost) – Most participants, particularly
low-income and middle-income residents have
experienced difficulty finding insurance, using the
insurance they have, or paying out of pocket.
Quality – There were many positive statements
regarding quality of care, particularly regarding the Lincoln Clinic. However, across the board there
were serious quality concerns, about aspects of care, particularly related to St Peter’s Hospital.
Acceptability/Dignity –Concerns about dignity during provision of service were raised by low-
income residents – particularly the uninsured and those on Medicaid – as well as residents seeking
long-term mental health care.
Health Care as a Human Right –The majority of participants did consider health care to be a
human right. Several others emphasized ethical obligations to meet health care needs, but did not
feel comfortable expressing that in human rights terms. Many participants stressed that to have a
healthy community, the government or community needed to help everybody to be healthy.
Suggestions for reform – participants offered a range of suggestions in the areas of expanding
health services, improving care coordination, improving navigability, etc.
Discussion
Availability of Services
Availability of health services in Lewis and Clark County can be poor. Availability of primary
care to local residents is impeded by a shortage of primary care providers, as well as a lack of off-
peak office hours during which patients can make appointments without conflicting with their work
schedules. Residents also noted a shortage of specialists, particularly quality dental care for low-
income residents as well as mental health providers in general. Referrals to specialists often require
“The cost of medical care is probably the
number one thing preventing anyone from
going to the doctor”
Augusta Focus Group
patients go out-of-county or out-of-network for services, the latter resulting in the patient having to
pay out of pocket for care.
Physicians working within the current health care model are required to operate as businesses.
Because their financial survival depends upon making smart business decisions, health care
professionals may only open practices in areas that promise large populations to care for and the
potential to recruit and retain staff. Consequently, rural populations will lack local services, and will
consequently have to travel great distances to find available care. This can also be a particular
problem for low-income patients because, working within a market model, health care professionals
may only take patients with insurance, may restrict the number of publically-insured patients that
they care for, or may not accept Medicare or Medicaid patients altogether.
There is also poor availability of transportation options to get rural residents and the elderly – other
than private transportation or dependence on family and friends. The ambulance service in Helena
is too expensive for many residence, although residents in Lincoln and Augusta praised the service
provided local volunteer ambulances. Issues of transportation go hand in hand with geographic
isolation from medical facilities, especially for the elderly and northern county residents.
The structure of the current system and its many different forms of administration means that
each person, depending on their insurance (or lack of insurance), requires a different set of
information in order for them to successfully navigate the health system. Patients often do not know
where to go to get the information they particularly need in order to access the available health
services that they can personally afford. Information about ways to obtain cheaper medication or
insurance is also difficult to come by, and prices for services may not be uniform in different
locations, making it difficult for patients to determine whether or not they are getting the best deal.
Thus, availability can be restricted financially, physically, and through a lack of knowledge of what
is available. Lastly, children and teenagers may face additional barriers such that, even if they do
know where to get the services they need, they may not feel comfortable with telling their parents
about their health needs, or might have parents who wish for their children not to seek services.
Access: Cost & Financing
Almost all respondents felt that health care and health insurance was too expensive, and many
residents had (at some point) chosen to forgo health insurance or healthcare, or both, due to
financial considerations. In some cases, uninsured individuals were uninsured simply because of a
calculated decision that insurance was too expensive to be worth purchasing. As a market good,
access to health care is based on a person’s ability to pay for it, but there is overwhelming evidence
that market mechanisms fail to provide equal access to health care.
Although most respondents had insurance, many
had very meager plans with high deductibles that
precluded them from using their insurance to obtain
needed care, instead reserving insurance for use only in
“You know, I grew up pretty darn poor. And I remember 15 years of early marriage paying 5 or 10 dollars to a
whole bunch of separate medical providers. And not being able to, I mean, it takes 15 years to pay off something.
Well that’s going on all over the country right now. And there’s a whole bunch of people that aren’t getting
service at all. I mean that makes me sad.”
2nd
Lincoln Focus Group
“[I]f you don’t have money, then you
don’t have the right to care.”
Helena 4 Focus Group
cases of extreme emergency. Because of the expense, participants reported forgoing care or waiting
to get care until they can no longer avoid it. In some cases, people felt that it would be better for
them to die so that financial burdens on their families could be eased. When care was sought,
information about bills was in several cases confusing or incomprehensible without assistance. In
some cases, bills contained errors that patients had difficulty getting corrected. Many respondents
felt threatened by medical bills, did not feel supported by their insurer, and in some cases, feared
legal repercussions on their finances.
Government-sponsored insurance was generally seen as a positive option; however there were
problems with its availability and administration. There was concern that people who needed
government-sponsored insurance but were not eligible (particularly poor people who made too
much for Medicaid and retired individuals that were not yet old enough to qualify for Medicare).
There was also concern that applying for the programs, particularly the Medicaid application
process, was too difficult to navigate alone.
Quality of Care
There were many services in Lewis and Clark County that garnered praise. However, such
comments were overshadowed by many negative comments about quality of care received. The
quality of care at the Lincoln clinic, county WIC services, the Helena Foodshare, and volunteer
ambulance services especially were highly praised. Some concerns were related to the current
system’s rewards for the use of technology and pharmaceuticals rather than quality, appropriate
care. Repeated concerns over quality of care were raised regarding St. Peter’s Hospital in Helena,
particularly for emergency care.
Some, participants, particularly those without financial means, and those with specific health
conditions, felt judged, stigmatized, and treated badly in the local health care system. They
attributed this to their inability to pay for their care, or a lack of proper understanding of their health
problems. For example, participants raised multiple concerns over quality, patient-centered mental
health care tailored to what was appropriate for the individual patient.
Participants also reported a lack of communication between providers in cases where they were
seeing multiple providers, both regarding patient care as well as valuable knowledge and
information. This created frustration for patients, who may have been subjected to inefficient care.
In some cases, participants stated or implied that service providers prioritized profitability at the
expense of quality care. When health care is viewed as a commodity to be bought and sold, low-
income people that are unable to pay for their care may be seen to be taking advantage of the
system, or receiving “charity”. The presence of this view was reflected, and particularly apparent, in
prejudice by other participants against alleged “welfare” recipients (a term sometimes erroneously
used to refer to anyone participating in a government-sponsored program) or “illegal” immigrants.
“I was really in pain, and nobody came out in all this time to say ‘ok, is there anything we can do?’ … And I was
getting madder and madder, but there wasn’t anything I could do about it because I couldn’t move. [He] gave me a
couple of pills, and said I could take one or two of them, and said, ‘Alright, I’ll have the nurse get you a walker so
that you can get home alright.’ I have steps going up to my house, and my bathroom was upstairs, I live alone, and
I told him this. And he said, you know, ‘I’d really like to admit you but I can’t.’”
Taskforce Focus Group
Acceptability & Dignity in Treatment
Some respondents, particularly low-income participants, expressed concern about being treated
with respect by health providers. Multiple participa9nts felt that doctors had been dismissive of
their concerns, and in some cases, were made to feel that they had no right to express concerns over
quality of care simply because they were not paying for the full cost of their care.
There was also concern about mental health care, and particularly a lack of understanding
among county providers about differen mental health disorders (ex: understanding about PTSD
among medical providers outside the VA system). Patients reported being given excessive
medications, or not receiving adequate care such that when their condition worsened, they were
reported to the police rather than mental health providers.
Health and Healthcare as a Human Right?
All but one of the focus groups were posed the question of whether they considered health care
to be a human right, and the majority generally agreed that health care was a human right. Low-
income participants, as well as Medicare and Medicaid beneficiaries overwhelmingly agreed on
health and healthcare as a human right. Some participants qualified their agreement with a caveat
that healthcare went hand-in-hand a certain degree of personal responsibility to keep oneself
healthy. Of those who stated that they did not believe healthcare to be a human right, participants
still placed high importance on healthcare, and often associated the availability of healthcare with
ethical responsibility. For example, some participants qualified healthcare as a “human need” rather
than a “human right.” When asked to explain the term “human need”, the explanation was couched
in human rights doctrine, suggesting that it was the terminology of “human right” that participants
hesitated to use, rather than reservations about the concept itself.
Participants were more split over the question of government involvement in providing residents
with healthcare. While many participants (especially Medicare beneficiaries) were in favor of
government involvement in providing healthcare coverage, several other participants – especially
rural participants – were resistant to the idea of government involvement. Some participants chose
“I believe [health care] is a right, but it does come with responsibility, and that's the challenge for society, to
impress upon people what their basic responsibility is to each other, as a society what we're all responsible
to each other here to do our best to be contributors to society, to be honest, to be good parents, good
friends, you know it's the community. Somehow we have to rise up better, I think, than we do."
Lincoln 2 Focus Group
“I went in Wednesday, pulled a tooth that was abscessed. I told them I needed antibiotics, and they said
no. I went back Friday as my face was even more swollen than it is now. He kind of laughed and said, “Well,
I guess we should have started those antibiotics anyhow.” Then reminded me that I was getting the care for
free. … I’m going to get into a different dentist that will take payments because it broke one tooth, pulling
one out, and I was reminded twice that I was getting the service for free.”
YWCA Focus Group
a middle ground of “moderate” guidance by the
government in healthcare matters. Participants did
generally agree that children should be covered by
health insurance. For those who opposed government
involvement, there was a general agreement that where
individuals had difficulty taking care of themselves,
the community should provide some assistance in
filling the gap. Some participants voiced skepticism
that there was anything that could be done at the
county-level to address their concerns, but there was
some hope that the county could maybe address some
transportation issues, improving funding for facilities
like the cooperative health center, and engage with neighboring counties to better address the needs
of residents on the borders. There was, however, a general agreement that some collective
obligation exists to ensure access to health care for all, especially in order to have a healthy
community. Most participants saw some role for either government or the local community to help
everybody to be as healthy as possible.
Recommendations
The focus groups yielded a host of suggestions from participants about what needed to be done
in order to improve health care for county residents, most of which centered on expanding existing
services, improving care-coordination, improving navigability of health services, and expanding or
improving financing options. While some suggestions referred to issues outside the county’s
authority, many others would require only minor changes. In many instances, participants did not
readily think of systemic changes and instead focused on specific improvements to make their usage
of the system easier. Some participants, mainly from Augusta, voiced skepticism that there was
anything that could be done at the county level to address their concerns.
Residents particularly pointed to a need to expand primary care services, especially for low-
income and more rural patients. Suggestions included improving funding for satellite or traveling
clinics to northern parts of the counties, and expanding office hours to include some options for off-
peak hour appointments. There were multiple suggestions to improve the availability of children-
centered services, both primary care and mental health services. Improved coordination of health-
related information sharingwas a major issue raised in several contexts: disseminating health
services information to residents, improving communication between providers, and coordinating
with neighboring counties to ensure adequate services for northern county residents. Multiple
suggestions to improve transportation, particularly for the elderly, were also made.
Among the recommendations that may need to be addressed at the state level are extending
eligibility for Medicaid, requiring employers to allow paid sick days, and addressing high costs of
coverage and care. Some suggestions however could be easily implemented at the county level,
starting with improving the availability of comprehensive, user-friendly information and advice
about health services, for example through creating a health information center or an 800-number,
and improving public transportation, particularly within Helena and between Lincoln and Helena.
More systemic changes, however, are clearly needed and demanded. Expanding primary care
services, including dental care, through the Cooperative Health Center and satellites would fill
crucial gaps particularly for rural and lower-income communities. Finally, based on participants’
“We’re human beings; it doesn’t matter
whether we make $7 an hour or six digits
a year. We’re humans and we all have
something to offer. … Why can’t we get
room deserves excellent doctors and
caring, patient people. Why is our
income a factor in that? I don’t
understand that. So it should be a right,
and it is very much about respect.”
YWCA Focus Group
comments, the role of the hospital in the community would need to be improved with some
urgency.
Limitations
The fact that we were not able recruit
participants quite in the manner as we had
hoped to do under the sampling framework
presented a major limitation. Of the eight
focus groups held, four of them had either
only two or three participants, while two
groups had ten or more participants. Thus
the distribution of participants among focus groups was not as even as we would have liked.
However, the larger groups were held outside of Helena, and while some of the Helena groups were
smaller, there were more groups conducted in Helena (4) than anywhere else. The other issues in
sample can be seen in the fact that none of our participants fell into the 35-44 years age group. The
average participant age was over 50 years-old, indicating a generally older set of participants.
Aside from sampling limitations, there was also acknowledgement that uniformity in how each
of the groups was conducted might be difficult to ensure. This is due to the fact that while the first
few focus groups were conducted with representatives from NESRI (trained in qualitative research),
later groups were run solely by MHRN and Task Force representatives, who had been trained by
NESRI but were themselves new and much less familiar with conducting qualitative research.
Conclusion
Overall, the participants and partner response to
the project seemed positive, and hopefully, the project
will provide the county health Task Force with some
ideas for county-level improvements to the existing
system. While the county might not have the funds to open a full clinic in August to serve northern
county residents, a small satellite clinic or traveling services to the northern areas of the county
might fill some of the gap. Furthermore, although the county may not be able to require more
providers to accept sliding-scale fees or payment plans, increased funding to the community health
center or a new similar facility would help increase the availability of primary care and dental
services to low-income patients. The county also needs some way of monitoring respect issues –
maybe setting up a forum for residents to voice concerns about care at local facilities, and possibly
addressing concerns to a county health coordinator position if one is created.
“We’re Medicare, and it’s wonderful. It’s
wonderful. I mean I wish everybody in the
country had it.”
2nd
Lincoln Focus Group
“The group we did last week…it’s not a reflection of
the entire community, but it’s a reflection of some
parts of the community…”
Researcher, about one focus group

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Qualitative Research on Health as a Human Right in Lewis & Clark County, Montana

  • 1. Purvi Patel JD/MPH Class of 2010 Tufts University School of Medicine Department of Public Health & Professional Degrees Master of Public Health Applied Learning Experience (ALE) Project Title: Implementing a Human Right to Healthcare: A Qualitative Case Study in Lewis & Clark County, Montana. Project Site: National Economic & Social Rights Initiative Preceptor: Anja Rudiger, Human Right to Health Program Director Community Presentation: available at http://www.slideshare.net/patelpurvip/qualitative-research- on-health-as-a-human-right-in-lewis-clark-county-montana Abstract Lewis & Clark County, Montana is home to approximately 60,000 Montana residents, many of them concentrated in a few small towns, such as Helena (the state capital), Augusta, and Lincoln. The best available data indicated that 21% of county residents live without health insurance. Furthermore, residents without health insurance experience serious lack of access to healthcare, factors that contribute to serious health problems such as increased risk of dying from cancer, serious complications and worse clinical outcomes for chronic diseases like diabetes, cardiovascular disease, and mental illness. On December 4, 2008, the Lewis & Clark County Board passed a resolution declaring health and healthcare to be a human right for all of its county residents, and creating a task force charged with conducting a countywide health needs assessment to investigate ways to implement the new mandate. To assist with the county’s health needs assessment, this project (working with NESRI) sought to evaluate qualitative focus group data gathered from Lewis & Clark county residents regarding current access to healthcare, quality of services, and barriers to receiving or seeking care, as well as opinions on the notion of health and health care as a human right. Qualitative research was conducted by NESRI and the Montana Human Rights Network (MHRN) through eight focus groups in four towns within Lewis & Clark County between mid-August and early-November 2009. Groups ranged in size from two to fourteen participants, with a total of 47 participants. Focus groups sought: 1. To identify how sample populations (rural, uninsured, underinsured, etc.) use health services; 2. To identify barriers to accessing health care; 3. To identify unmet health needs; 4. To solicit recommendations on what measures the county should take to move toward universal access; and 5. To obtain feedback on the Board of Health’s resolution
  • 2. IRB exemption was sought and granted because analysis consisted of evaluating de-identified qualitative data from focus group transcripts. Group-by-group demographics were gathered through the use of participant monitoring forms, and aggregated to provide an overall picture of research demographics for the project. Over half of focus group participants were between the ages of 45-64 years; none of the participants fell between 35-44 years-old, which was seen as a short coming in the sample groups researchers were able to recruit. Education level was fairly well distributed among participants, however about two-thirds or participants had $50,000 of income per year or less. Almost two-thirds of participants depended on employer-sponsored or governments-sponsored (i.e. Medicare or Medicaid) plans for health insurance; around one quarter of participants were uninsured. Qualitative data was analyzed according to a human right to health framework, looking at themes of access to care (costs and financing), availability of services, quality of care, and dignity in treatment. Participants of all groups except one (Augusta) were also asked to discuss whether they believe health and healthcare to be a human right. Participants offered a range of suggestions for the county in the areas of expanding health care services, particularly primary care, improving care coordination, improving the navigability of the health system, improving transportation, and expanding financing options. Based on these findings, we drafted preliminary recommendations for reform to the Lewis & Clark County Health Task Force.
  • 3. Problem Analysis Lewis & Clark County, home to Montana state capital Helena, hosts 60,925 residents,1 21% of whom currently live without health insurance – which amounts to thousands of individuals.2 In 2006, it was estimated that 12% of the Montana adult population in general was unable to visit a doctor due to cost.3 Such data suggest serious complications and worse clinical outcomes for chronic diseases like diabetes, cardiovascular disease, and mental illness.4 Montana is also ranked highest in the country in the number of completed suicides.5 In Lewis & Clark County specifically:  Almost 29% of people in Lewis and Clark County live below 200% of the federal poverty level (FPL)  21% lack health insurance  7% are on Medicaid  54% of Community Health Center clients were uninsured in 20046 As the 2008-09 debate over national healthcare reform grew increasingly contentious, many state and local governments increasingly felt compelled to respond to the health needs of their residents. Based on statistics such as those above, and in the shadow of the ongoing debate over health reform, and the fierce arguments over a potential national pubic health insurance option, the Health Board of Lewis & Clark County in Montana approved a resolution in early December 2008 recognizing a “basic human right” to healthcare for all of its residents7 . To comply with the new county health care resolution, the Lewis & County Clark County Health Board created a locally-grounded Task Force on local Access to Universal Healthcare charged with assessing the health care needs in the county, and to make recommendations about implementing the new healthcare mandate. The Task Force is currently developing an action plan for providing access to universal health care in Lewis and Clark County and moving toward a universal, equitable system. To this end, the Task Force is expected to produce a final report of its recommendations by March 2010. Based on the task force’s recommendations, the county Health Board will then try to design some a plan or system that provides universal health care for the area.8 In the words of one Helena city commissioner and Health Board member, “[the Board] said, ‘Let’s see what we can do to change the debate, and maybe end up with some solutions that we don’t even know exist at this point.’ ”9 Description of the Agency and Partners: NESRI & the Montana Human Rights Network As an initial step, the L&C county health Task Force sought the assistance of the Montana 1 Lewis & Clark County population statistics, 2008. Available at: http://quickfacts.census.gov/qfd/states/30/30049.html. 2 Mike Dennison, City-County Health Board proposes universal health care. IR State Bureau, HelenaIR.com, Dec 12, 2008. 3 Lewis & Clark County, 2009 Leading Public Health Indicators, Lewis & Clark City-County Health Department, 13. 4 Draft resolution available at www.nesri.org/.../Local_Universal_Healthcare_Resolution_Final_December.pdf. 5 Lewis & Clark County, 2009 Leading Public Health Indicators, , 12. 6 Health and Health Care in Lewis & Clark County: An Initial Data Review. Human Right to Health Program, NESRI / NHeLP, 18. 7 Dennison 8 Dennison. 9 Dennison.
  • 4. Human Rights Network (MHRN) and NESRI to better understand the needs of county residents through a health needs assessment. National Economic and Human Rights Initiative The National Economic and Social Rights Initiative (NESRI) promotes a human rights vision for the United States that ensures dignity and access to the basic resources needed for human development and civic participation. Towards this end, NESRI works with organizers, policy advocates and legal organizations to incorporate a human rights perspective into their work and build human rights advocacy models tailored for the United States. NESRI takes a partnership approach to building a human rights culture in the United States, and prioritizes partnerships at the community level. Preceptor: Anja Rudiger (NESRI) Anja Rudiger is the Director of the Human Right to Health Program, a joint program run by NESRI and the National Health Law Program. Ms. Rudiger works with state-based coalitions to develop human rights approaches and tools for health care reform efforts. She is an expert on human rights and equality, specializing in policy analysis of disparities in the exercise of civic, economic and social rights. She has extensive experience integrating a rights-based approach to policymaking at local, national and international level. Previously, Ms. Rudiger carried out consultancies for governmental and non-governmental organizations, led the research department at the British Refugee Council in London, and managed the UK Secretariat of the European Monitoring Centre on Racism and Xenophobia. She received her Ph.D. in Political Science from the University of Kiel in Germany. Collaborators: Montana Human Rights Network Based in Helena, the Montana Human Rights Network (MHRN) is a grassroots, membership- based organization of over 1400 members. MHRN’s mission is two-fold: 1) To promote democratic values such as pluralism, equality and justice; challenge bigotry and intolerance; and organize communities to speak out in support of democratic principles and institutions; and 2) To challenge hate groups and other extremists who use violence and intimidation as tools for political activism. Methodology To implement a countywide health needs assessment, the partner agencies began consulting with community members and collecting their suggestions for improving access to care. Based on the belief that community members’ health needs and ideas for improvement can best be explored through qualitative and participatory research, the Task Force and its partners decided to implement use of a qualitative research component to the assessment through focus groups with community members. Through focus groups, the Task Force hoped to be able to get useful in-depth information on barriers to access, diagnose specific issues that need to be addressed, gain views on potential improvements, and build awareness and support within the community for the planning phase of project. [rest of Methods section truncated]
  • 5. Using a Human Rights Framework of Analysis Initial drafting of the focus group protocol used basic tenets of a human rights framework to guide the questions asked of participants. The human rights framework protects civil, political, economic, social and cultural rights. Each right recognized under this framework adheres to basic principals that are always part of human rights standards and implementation. These principals include universality, indivisibility, participation, accountability, transparency, and non- discrimination. Data gathered from the focus groups was analyzed under a human right to health framework, which assumes that the purpose of a health care system is to protect health of each member of society. As such, its design must be guided by the following key human rights standards:  Universal access: Access to health care must be universal, guaranteed for all on an equitable basis. Health care must be affordable and comprehensive for everyone, and physically accessible where and when needed. o Affordability: Health care must be affordable for everyone, with charges based on the ability to pay, regardless of how health care delivery is financed o Equity: Health care must be distributed equitably, with resources allocated and used according to needs and health risks. o Comprehensiveness: Health care must include all screening, treatments, therapies and drugs needed to preserve and restore health, including reproductive health.  Availability: Adequate health care infrastructure (e.g. hospitals, community health facilities, trained health care professionals), goods (e.g. drugs, equipment) and services (e.g. primary care, mental health) must be available in all geographical areas and to all communities.  Acceptability and Dignity: Health care institutions and providers must respect dignity, provide culturally appropriate care, be responsive to needs based on gender, age, culture, language, and different ways of life and abilities. They must respect medical ethics and protect confidentiality.  Quality: All health care must be medically appropriate and of good quality, guided by quality standards and control mechanisms, and provided in a timely, safe, and patient- centered manner. The following principles, which apply to all human rights, are also essential elements of a health care system:  Non-discrimination: Health care must be accessible and provided without discrimination (in intent or effect) based on health status, race, ethnicity, age, sex, sexuality, disability, language, religion, national origin, income, or social status  Information and Transparency: Health information must be easily accessible for everyone, enabling people to protect their health and claim quality health services. Institutions that organize, finance or deliver health care must operate transparently.  Participation: Individuals and communities must be able to take an active role in decisions
  • 6. that affect their health, including in the organization and implementation of health care services.  Accountability: Private companies and public agencies must be held accountable for protecting the right to health care through enforceable standards, regulations, and independent compliance monitoring. Results: Participant Demographics Of the 47 participants, across eight focus groups, over half (57.1%) were between 45-64 years of age. Not a single participant fell into the 35-44 years-old range, reflecting a gap in our sampling pool. Participants’ education levels were considerable more varied. Three quarters of participants who responded about their education level had either a high school diploma, an associates degree, or a bachelors degree. An additional 20% of responding participants had obtained a graduate degree, while 5% had not finished high school. Over two-thirds (almost 70%) of participants made incomes of $50,000 or less. In 16 of those cases (41%) cases, participants made less than $15,000 per year. Of those who had health care insurance at the time of the focus group, about 37% had employer based insurance, while over 39% had government sponsored program (i.e. Medicare and Medicaid, excluding coverage through the Department of Veterans Affairs). About one quarter of participants (24) were uninsured. Racial or ethnic discrimination was not a big issue. The vast majority of participants identified as US-born Caucasians, with two of the participants identifying as Native American, and one defining as a naturalized America citizen from China. As a result, racial or ethnic/discrimination was not as much of a concern as economic disparities between participants. Groups Conducted (8 groups, 47 Participants) Group Date # Participants Experts 8/17/09 3 YWCA 8/17/09 7 Canyon Creek 8/19/09 2 Lincoln 1 8/20/09 2 Augusta 8/25/09 13 FoodShare 10/13/09 10 Lincoln 2 10/14/09 3 Helena 4 11/5/09 7 Gender Percentages Male Female 40% 60%
  • 7. Residency Status (Unknowns excluded) number percentage US-born Citz. 45 98% Naturalized Citz. 1 2% Immigrant 0 0% Race/Ethnicity number percentage White 45 96% American Indian/ Alaskan Native 2 4% Education no HS Diploma HS/GED Associate's Bachelor's Graduate Education Level (Unknowns excluded) number percentage no HS Diploma 2 5% HS/GED 14 34% Associate's 4 10% Bachelor's 13 32% Graduate 8 20% Income < $20,000 $20,000 - $49,999 $50,000 - $100,000 $100K+ HouseholdIn come (Unknowns excluded) number percentage < $20,000 16 41% $20,000 - $49,999 11 28% $50,000 - $100,000 9 23% $100K+ 3 8% Average Age = 52.0 years-old (Unknowns excluded) Age Range number percentage 18-24 years 2 5% 25-34 years 5 12% 35-44 years 0 0% 45-54 years 11 26% 55-64 years 13 31% 65+ years 11 26% Health Insurance Status Uninsured Employer-based Gov-sponsored Individual Other (e.g. VA, parents) NOTE: some participants had more than one source of insurance Insurance Status (Unknowns excluded) number percentage Uninsured 11 24% Employer-based 17 37% Gov-sponsored 14 30% Individual 6 13% Other (e.g. VA, parents) 5 11%
  • 8. “Some of the doctors, that are listed in the yellow pages, they’re full. I’ve been having trouble finding a family doctor because I was going to one, but I can’t see him anymore. I’m trying to find a new one, but the people that people have been referring me to, they’re full so they won’t take any more. And I stopped looking, but I’ve had that happen a few times.” YWCA Focus Group Results: Key Findings GENERAL OVERVIEW Availability of health care– lower income residents generally felt there was a shortage of service providers in the county. Rural residents felt this particularly acutely. Low income residents also had difficulty finding health care providers. Higher income residents experienced fewer problems with finding service providers, with the possible exception of in-county mental health services. Access (Cost) – Most participants, particularly low-income and middle-income residents have experienced difficulty finding insurance, using the insurance they have, or paying out of pocket. Quality – There were many positive statements regarding quality of care, particularly regarding the Lincoln Clinic. However, across the board there were serious quality concerns, about aspects of care, particularly related to St Peter’s Hospital. Acceptability/Dignity –Concerns about dignity during provision of service were raised by low- income residents – particularly the uninsured and those on Medicaid – as well as residents seeking long-term mental health care. Health Care as a Human Right –The majority of participants did consider health care to be a human right. Several others emphasized ethical obligations to meet health care needs, but did not feel comfortable expressing that in human rights terms. Many participants stressed that to have a healthy community, the government or community needed to help everybody to be healthy. Suggestions for reform – participants offered a range of suggestions in the areas of expanding health services, improving care coordination, improving navigability, etc. Discussion Availability of Services Availability of health services in Lewis and Clark County can be poor. Availability of primary care to local residents is impeded by a shortage of primary care providers, as well as a lack of off- peak office hours during which patients can make appointments without conflicting with their work schedules. Residents also noted a shortage of specialists, particularly quality dental care for low- income residents as well as mental health providers in general. Referrals to specialists often require “The cost of medical care is probably the number one thing preventing anyone from going to the doctor” Augusta Focus Group
  • 9. patients go out-of-county or out-of-network for services, the latter resulting in the patient having to pay out of pocket for care. Physicians working within the current health care model are required to operate as businesses. Because their financial survival depends upon making smart business decisions, health care professionals may only open practices in areas that promise large populations to care for and the potential to recruit and retain staff. Consequently, rural populations will lack local services, and will consequently have to travel great distances to find available care. This can also be a particular problem for low-income patients because, working within a market model, health care professionals may only take patients with insurance, may restrict the number of publically-insured patients that they care for, or may not accept Medicare or Medicaid patients altogether. There is also poor availability of transportation options to get rural residents and the elderly – other than private transportation or dependence on family and friends. The ambulance service in Helena is too expensive for many residence, although residents in Lincoln and Augusta praised the service provided local volunteer ambulances. Issues of transportation go hand in hand with geographic isolation from medical facilities, especially for the elderly and northern county residents. The structure of the current system and its many different forms of administration means that each person, depending on their insurance (or lack of insurance), requires a different set of information in order for them to successfully navigate the health system. Patients often do not know where to go to get the information they particularly need in order to access the available health services that they can personally afford. Information about ways to obtain cheaper medication or insurance is also difficult to come by, and prices for services may not be uniform in different locations, making it difficult for patients to determine whether or not they are getting the best deal. Thus, availability can be restricted financially, physically, and through a lack of knowledge of what is available. Lastly, children and teenagers may face additional barriers such that, even if they do know where to get the services they need, they may not feel comfortable with telling their parents about their health needs, or might have parents who wish for their children not to seek services. Access: Cost & Financing Almost all respondents felt that health care and health insurance was too expensive, and many residents had (at some point) chosen to forgo health insurance or healthcare, or both, due to financial considerations. In some cases, uninsured individuals were uninsured simply because of a calculated decision that insurance was too expensive to be worth purchasing. As a market good, access to health care is based on a person’s ability to pay for it, but there is overwhelming evidence that market mechanisms fail to provide equal access to health care. Although most respondents had insurance, many had very meager plans with high deductibles that precluded them from using their insurance to obtain needed care, instead reserving insurance for use only in “You know, I grew up pretty darn poor. And I remember 15 years of early marriage paying 5 or 10 dollars to a whole bunch of separate medical providers. And not being able to, I mean, it takes 15 years to pay off something. Well that’s going on all over the country right now. And there’s a whole bunch of people that aren’t getting service at all. I mean that makes me sad.” 2nd Lincoln Focus Group “[I]f you don’t have money, then you don’t have the right to care.” Helena 4 Focus Group
  • 10. cases of extreme emergency. Because of the expense, participants reported forgoing care or waiting to get care until they can no longer avoid it. In some cases, people felt that it would be better for them to die so that financial burdens on their families could be eased. When care was sought, information about bills was in several cases confusing or incomprehensible without assistance. In some cases, bills contained errors that patients had difficulty getting corrected. Many respondents felt threatened by medical bills, did not feel supported by their insurer, and in some cases, feared legal repercussions on their finances. Government-sponsored insurance was generally seen as a positive option; however there were problems with its availability and administration. There was concern that people who needed government-sponsored insurance but were not eligible (particularly poor people who made too much for Medicaid and retired individuals that were not yet old enough to qualify for Medicare). There was also concern that applying for the programs, particularly the Medicaid application process, was too difficult to navigate alone. Quality of Care There were many services in Lewis and Clark County that garnered praise. However, such comments were overshadowed by many negative comments about quality of care received. The quality of care at the Lincoln clinic, county WIC services, the Helena Foodshare, and volunteer ambulance services especially were highly praised. Some concerns were related to the current system’s rewards for the use of technology and pharmaceuticals rather than quality, appropriate care. Repeated concerns over quality of care were raised regarding St. Peter’s Hospital in Helena, particularly for emergency care. Some, participants, particularly those without financial means, and those with specific health conditions, felt judged, stigmatized, and treated badly in the local health care system. They attributed this to their inability to pay for their care, or a lack of proper understanding of their health problems. For example, participants raised multiple concerns over quality, patient-centered mental health care tailored to what was appropriate for the individual patient. Participants also reported a lack of communication between providers in cases where they were seeing multiple providers, both regarding patient care as well as valuable knowledge and information. This created frustration for patients, who may have been subjected to inefficient care. In some cases, participants stated or implied that service providers prioritized profitability at the expense of quality care. When health care is viewed as a commodity to be bought and sold, low- income people that are unable to pay for their care may be seen to be taking advantage of the system, or receiving “charity”. The presence of this view was reflected, and particularly apparent, in prejudice by other participants against alleged “welfare” recipients (a term sometimes erroneously used to refer to anyone participating in a government-sponsored program) or “illegal” immigrants. “I was really in pain, and nobody came out in all this time to say ‘ok, is there anything we can do?’ … And I was getting madder and madder, but there wasn’t anything I could do about it because I couldn’t move. [He] gave me a couple of pills, and said I could take one or two of them, and said, ‘Alright, I’ll have the nurse get you a walker so that you can get home alright.’ I have steps going up to my house, and my bathroom was upstairs, I live alone, and I told him this. And he said, you know, ‘I’d really like to admit you but I can’t.’” Taskforce Focus Group
  • 11. Acceptability & Dignity in Treatment Some respondents, particularly low-income participants, expressed concern about being treated with respect by health providers. Multiple participa9nts felt that doctors had been dismissive of their concerns, and in some cases, were made to feel that they had no right to express concerns over quality of care simply because they were not paying for the full cost of their care. There was also concern about mental health care, and particularly a lack of understanding among county providers about differen mental health disorders (ex: understanding about PTSD among medical providers outside the VA system). Patients reported being given excessive medications, or not receiving adequate care such that when their condition worsened, they were reported to the police rather than mental health providers. Health and Healthcare as a Human Right? All but one of the focus groups were posed the question of whether they considered health care to be a human right, and the majority generally agreed that health care was a human right. Low- income participants, as well as Medicare and Medicaid beneficiaries overwhelmingly agreed on health and healthcare as a human right. Some participants qualified their agreement with a caveat that healthcare went hand-in-hand a certain degree of personal responsibility to keep oneself healthy. Of those who stated that they did not believe healthcare to be a human right, participants still placed high importance on healthcare, and often associated the availability of healthcare with ethical responsibility. For example, some participants qualified healthcare as a “human need” rather than a “human right.” When asked to explain the term “human need”, the explanation was couched in human rights doctrine, suggesting that it was the terminology of “human right” that participants hesitated to use, rather than reservations about the concept itself. Participants were more split over the question of government involvement in providing residents with healthcare. While many participants (especially Medicare beneficiaries) were in favor of government involvement in providing healthcare coverage, several other participants – especially rural participants – were resistant to the idea of government involvement. Some participants chose “I believe [health care] is a right, but it does come with responsibility, and that's the challenge for society, to impress upon people what their basic responsibility is to each other, as a society what we're all responsible to each other here to do our best to be contributors to society, to be honest, to be good parents, good friends, you know it's the community. Somehow we have to rise up better, I think, than we do." Lincoln 2 Focus Group “I went in Wednesday, pulled a tooth that was abscessed. I told them I needed antibiotics, and they said no. I went back Friday as my face was even more swollen than it is now. He kind of laughed and said, “Well, I guess we should have started those antibiotics anyhow.” Then reminded me that I was getting the care for free. … I’m going to get into a different dentist that will take payments because it broke one tooth, pulling one out, and I was reminded twice that I was getting the service for free.” YWCA Focus Group
  • 12. a middle ground of “moderate” guidance by the government in healthcare matters. Participants did generally agree that children should be covered by health insurance. For those who opposed government involvement, there was a general agreement that where individuals had difficulty taking care of themselves, the community should provide some assistance in filling the gap. Some participants voiced skepticism that there was anything that could be done at the county-level to address their concerns, but there was some hope that the county could maybe address some transportation issues, improving funding for facilities like the cooperative health center, and engage with neighboring counties to better address the needs of residents on the borders. There was, however, a general agreement that some collective obligation exists to ensure access to health care for all, especially in order to have a healthy community. Most participants saw some role for either government or the local community to help everybody to be as healthy as possible. Recommendations The focus groups yielded a host of suggestions from participants about what needed to be done in order to improve health care for county residents, most of which centered on expanding existing services, improving care-coordination, improving navigability of health services, and expanding or improving financing options. While some suggestions referred to issues outside the county’s authority, many others would require only minor changes. In many instances, participants did not readily think of systemic changes and instead focused on specific improvements to make their usage of the system easier. Some participants, mainly from Augusta, voiced skepticism that there was anything that could be done at the county level to address their concerns. Residents particularly pointed to a need to expand primary care services, especially for low- income and more rural patients. Suggestions included improving funding for satellite or traveling clinics to northern parts of the counties, and expanding office hours to include some options for off- peak hour appointments. There were multiple suggestions to improve the availability of children- centered services, both primary care and mental health services. Improved coordination of health- related information sharingwas a major issue raised in several contexts: disseminating health services information to residents, improving communication between providers, and coordinating with neighboring counties to ensure adequate services for northern county residents. Multiple suggestions to improve transportation, particularly for the elderly, were also made. Among the recommendations that may need to be addressed at the state level are extending eligibility for Medicaid, requiring employers to allow paid sick days, and addressing high costs of coverage and care. Some suggestions however could be easily implemented at the county level, starting with improving the availability of comprehensive, user-friendly information and advice about health services, for example through creating a health information center or an 800-number, and improving public transportation, particularly within Helena and between Lincoln and Helena. More systemic changes, however, are clearly needed and demanded. Expanding primary care services, including dental care, through the Cooperative Health Center and satellites would fill crucial gaps particularly for rural and lower-income communities. Finally, based on participants’ “We’re human beings; it doesn’t matter whether we make $7 an hour or six digits a year. We’re humans and we all have something to offer. … Why can’t we get room deserves excellent doctors and caring, patient people. Why is our income a factor in that? I don’t understand that. So it should be a right, and it is very much about respect.” YWCA Focus Group
  • 13. comments, the role of the hospital in the community would need to be improved with some urgency. Limitations The fact that we were not able recruit participants quite in the manner as we had hoped to do under the sampling framework presented a major limitation. Of the eight focus groups held, four of them had either only two or three participants, while two groups had ten or more participants. Thus the distribution of participants among focus groups was not as even as we would have liked. However, the larger groups were held outside of Helena, and while some of the Helena groups were smaller, there were more groups conducted in Helena (4) than anywhere else. The other issues in sample can be seen in the fact that none of our participants fell into the 35-44 years age group. The average participant age was over 50 years-old, indicating a generally older set of participants. Aside from sampling limitations, there was also acknowledgement that uniformity in how each of the groups was conducted might be difficult to ensure. This is due to the fact that while the first few focus groups were conducted with representatives from NESRI (trained in qualitative research), later groups were run solely by MHRN and Task Force representatives, who had been trained by NESRI but were themselves new and much less familiar with conducting qualitative research. Conclusion Overall, the participants and partner response to the project seemed positive, and hopefully, the project will provide the county health Task Force with some ideas for county-level improvements to the existing system. While the county might not have the funds to open a full clinic in August to serve northern county residents, a small satellite clinic or traveling services to the northern areas of the county might fill some of the gap. Furthermore, although the county may not be able to require more providers to accept sliding-scale fees or payment plans, increased funding to the community health center or a new similar facility would help increase the availability of primary care and dental services to low-income patients. The county also needs some way of monitoring respect issues – maybe setting up a forum for residents to voice concerns about care at local facilities, and possibly addressing concerns to a county health coordinator position if one is created. “We’re Medicare, and it’s wonderful. It’s wonderful. I mean I wish everybody in the country had it.” 2nd Lincoln Focus Group “The group we did last week…it’s not a reflection of the entire community, but it’s a reflection of some parts of the community…” Researcher, about one focus group