qualitative research on health as a human right in lewis & clark county, montana
DESCRIPTION
The final presentation of my Applied Learning Experience Presentation (ALE), the thesis requirement for my Masters of Public Health degree. The National Economic and Social Rights Initiative (NESRI) served as the host organization for my project. The final community presentation/defense was presented to the Tufts Medical School community in December 2009.TRANSCRIPT
Purvi Pinakin Patel
Candidate for JD/MPH
Preceptor: Anja Rudiger, Ph.D
National Economic & Social Rights Initiative (NESRI)
New York, NY
Implementing a Human Right to Implementing a Human Right to
Health:Health: a Qualitative Case Study a Qualitative Case Study Lewis & Clark County, MontanaLewis & Clark County, Montana
Lewis & Clark County, Lewis & Clark County, MontanaMontana
County Seat: Helena Year Organized: 1864Square Miles: 3,461
Lincoln
HELENA
Augusta
Canyon Creek
County Health ProfileCounty Health ProfilePopulation: 60,925
21% lack health insurance
12% of adults unable to visit a doctor due to cost
29% live below 200% of the federal poverty level (FPL)
7% are on Medicaid
54% of Community Health Center clients were uninsured in 2004
December 2008 Resolution: December 2008 Resolution: Health Care as a Human RightHealth Care as a Human Right
Needs Assessment PartnersNeeds Assessment Partners
National Economic & Social Rights Initiative (NESRI)
New York, NY
Anja Rudiger, Ph.D Dir, Human Right to Health Program
Expertise:◦ Training & technical
assistance
◦ Research, analysis and documentation
Montana Human Rights Network (MHRN)
Helena, MT
Kim Abbott, Project Liason
Expertise◦ monitoring and reporting on
the activities of the radical right-wing groups in Montana
◦ organizing local human rights groups & policy initiatives
Using a Human Rights FrameworkUsing a Human Rights Framework1. Universality: Must be afforded to everyone, without
exception.
2. Indivisibility: Are indivisible and interdependent
3. Participation: People have a right to participate in how decisions are made regarding protection of their rights.
4. Accountability: Governments must create mechanisms of accountability for the enforcement of rights.
5. Transparency: Governments must be open about all decision making processes related to rights.
6. Non-Discrimination: Human rights must be guaranteed without discrimination of any kind.
MethodologyMethodologyInitial Targets:
◦ 10 focus groups, 1-2 hours ea.
◦ 5-10 participants/group
◦ Sampling framework (by geography & demographics)
◦ Discussion protocol (past experiences, human rights framework)
ParticipantsParticipantsGroup Date # ParticipantsHelena - Task Force 8/17/09 3Helena - YWCA 8/17/09 7Canyon Creek 8/19/09 2Lincoln 1 8/20/09 2Augusta 8/25/09 13Helena - FoodShare 10/13/09 10Lincoln 2 10/14/09 3Helena 4 11/5/09 7TOTAL 47
AGES # percentage18-24 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%
Participant DemographicsParticipant DemographicsEducation Level Income
Education Level number percentageno HS Diploma 2 5%
HS/GED 14 34%Associate's 4 10%Bachelor's 13 32%
Graduate 8 20%
Income number percentage
< $20,000 16 41%
$20,000 - $49,999 11 28%
$50,000 - $100,000 9 23%
$100K+ 3 8%
Health Insurance Status number percentage
Uninsured 11 24%Employer-based 17 37%Gov-sponsored 14 30%
Individual 6 13%
Other (e.g. VA, parents) 5 11%
Health as a Human RightAccess: Cost & Financing:
Affordability - based on ability to pay
Equity - resources allocated and used according to needs and health risks
Comprehensiveness - all screening, treatments, therapies and drugs needed to preserve & restore health
Availability of Services:
Adequate health care infrastructure (e.g. facilities, trained professionals)
Adequate services (e.g. primary care, mental health)
Transportation
Quality of Care:
medically appropriate
timely, safe, and patient-centered
Acceptability and Dignity in Treatment:
culturally appropriate (gender, age, culture, language, etc.)
protect confidentiality
Key Findings: Access: Cost & Financing
Affordability of insurance coverage Employer-sponsored insurance plans can have such high deductibles or co-pays
virtually impossible for patients use services. Patients forgo routine, preventative care
health care services only for emergencies. Even premiums for cheaper private insurance seem too expensive Access to needed services for high-risk patients with pre-existing conditions may not be affordable
because of the increase in cost of insurance.
Expenses for Service In some cases, residents will remain uninsured and pay out-of-pocket for care, only seeking care for what
they can afford. This may mean paying for a diagnosis but treating with over-the-counter medications or self-care at home
Lack of alternative financing options for low-income patients
(i.e. sliding scale fees or payment plans).
Participants knew others who: Would not take medications because they could not afford to pay for them Felt it would be financially better for their spouses if they died rather than seek treatment that could lead to
financial burden.
Legal concerns
having to go to court to get bills paid Being concerned about financial consequences about not answering bill collectors
“We’re Medicare, and it’s wonderful. It’s wonderful. I mean I wish everybody in the country had it.” -- 2nd Lincoln Focus Group
Key Findings: Availability of Health Care
Shortage:
Family doctors/primary care
Specialists (coverage/out-of-network)
Ambulance/emergency services
Geographic Isolation/Transportation
Concerns about Navigability of the Health System
“Some of the doctors, that are listed in the yellow pages, they’re full…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
Key Findings: Quality of Care
Positive feedback Excellent WIC
Lincoln clinic great
Foodshare program
Voluntary ambulance (Lincoln & Augusta)
Negative feedback
Hospital
◦ Long waiting times in the ER, expensive care, poor quality
◦ Bad testing for serious symptoms, poor diagnosis
◦ Respondents feel providers care more about payment than patients
Communication between providers
“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
Key Findings: Acceptability & Dignity
“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.… broke one tooth, pulling one out, and I was reminded twice that I was getting the service for free.”
YWCA Focus Group
Respondents, particularly low income participants, expressed concern about being treated with respect by health providers.
Participants related stories they knew, people would◦ not take medications because they could not afford to pay for them
◦ feel it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden.
Poor or inadequate information about mental health disorders can be taken for deviant behavior and criminalized. This can lead to further stigmatization, and even criminalization, of a patient.
Is Health/Healthcare a Human Right?
The majority of participants considered health care as a human right (60%)
◦ More rural residence often felt that health care came with a degree of independent responsibility
◦ Medicaid and Medicare participants generally agreed that health care was a human right.
◦ People who considered themselves middle class but whose incomes put them in the lower-income brackets tended to display resentment of those receiving “free” health care, and did not consider health to be a human right.
Several others emphasized ethical obligations to meet health care needs, but did not feel comfortable using the term “human right.”
To have a healthy community, Government OR community members needed to help everybody to be healthy
“I think it should be a right but it comes with responsibilities.” (Lincoln 2) “I think it should be a right but it comes with responsibilities.” (Lincoln 2)
“I consider it to be out ethical responsibility to supply it to everybody, but I don’t see it as a human right.”
(Helena 4)
“I consider it to be out ethical responsibility to supply it to everybody, but I don’t see it as a human right.”
(Helena 4)
Recommendations Expand health services, particularly
primary care
Improve care-coordination
Improve navigability of health services
increase transportation options (ex: buses for the elderly)
Expand hours or reserve some business hours for off-peak times
Expand financing options
(uniform pricing, flexible financing, etc.)
Limitations
Sampling framework
◦ Actually recruiting groups as per framework
◦ Uniformity in group sizes
◦ Lack of participants between 35-44 years-old
Concern with moderation by newly trained task force members outside of NESRI
Distinguishing prejudice from personal frustrations and resentment over healthcare
“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 the Lincoln group
Anja RudigerNESRI
Victoria GrantNESRI
Kim AbbottMontana Human Rights Network
Martha DavisNortheastern University School of Law
Marcia BoumilTufts University School of Medicine, Dept. of Public Health &
Professional Degrees
Pat Hennessey, Billie Miller, and Bob PutschLewis & Clark County Task Force on Universal Access to Healthcare
AcknowledgementsAcknowledgements