Implementing a Human Right to Health:   a Qualitative Case Study  Lewis & Clark County, Montana Purvi Pinakin Patel Candid...
Lewis & Clark County, Montana County Seat:  Helena  Year Organized:  1864 Square Miles:  3,461 Lincoln HELENA Augusta Cany...
County Health Profile <ul><li>Population:  60,925 </li></ul><ul><li>21% lack health insurance </li></ul><ul><li>12% of adu...
December 2008 Resolution:  Health Care as a Human Right
Needs Assessment Partners <ul><li>National Economic & Social Rights Initiative (NESRI) </li></ul><ul><li>New York, NY </li...
Using a Human Rights Framework <ul><li>Universality:  Must be afforded to everyone, without exception.  </li></ul><ul><li>...
Methodology <ul><ul><li>Initial Targets: </li></ul></ul><ul><ul><li>10 focus groups, 1-2 hours ea. </li></ul></ul><ul><ul>...
Participants Group Date # Participants Helena - Task Force 8/17/09 3 Helena - YWCA 8/17/09 7 Canyon Creek 8/19/09 2 Lincol...
Participant Demographics <ul><li>Education Level </li></ul><ul><li>Income </li></ul>  Education Level number percentage no...
Health as a Human Right <ul><li>Access: Cost & Financing:  </li></ul><ul><li>Affordability  - based on ability to pay </li...
Key Findings :  Access:   Cost & Financing <ul><li>Affordability of insurance coverage </li></ul><ul><li>Employer-sponsore...
Key Findings :  Availability   of Health Care <ul><li>Shortage: </li></ul><ul><ul><li>Family doctors/primary care </li></u...
Key Findings :  Quality of Care <ul><li>Positive feedback </li></ul><ul><li>Excellent WIC </li></ul><ul><li>Lincoln clinic...
Key Findings :  Acceptability & Dignity <ul><li>“ I went in Wednesday, pulled a tooth that was abscessed.  I told them I n...
Is Health/Healthcare a Human Right? <ul><li>The majority of participants considered health care as a human right (60%) </l...
Recommendations <ul><li>Expand health services, particularly primary care </li></ul><ul><li>Improve care-coordination </li...
Limitations <ul><li>Sampling framework </li></ul><ul><ul><li>Actually recruiting groups as per framework </li></ul></ul><u...
<ul><li>Anja Rudiger </li></ul><ul><li>NESRI </li></ul><ul><li>Victoria Grant </li></ul><ul><li>NESRI </li></ul><ul><li>Ki...
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Qualitative Research on Health as a Human Right in Lewis & Clark County, Montana.

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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.

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  • Good Afternoon, my name is Purvi Patel, and I - like Allison - am a JD/MPH candidate. For my ALE I worked with the National Economic and Social Rights Initiative, whom Allison mentioned earlier. Specifically, I worked with Anja Rudiger, the Human right to Healht Program director, to analyze qualitative focus group data collected in Lewis &amp; Clark County, Montana as part of a county health needs assessment.
  • Some background on Lewis &amp; Clark County: it is located roughly in central-western Montana and is home to Helena, the state capital. The towns you see depicted here were the locations for the focus groups that I helped analyze. Note that Augusta is located north of the mountains. The northern part of the county is fairly isolated from the southern half, which played into some o the healthcare concerns -- the closest town within-county health services to Augusta is Lincoln, on the other side of a mountain pass. Most norhtern residents consequently tend to go out of county for care and services.
  • This data was drawn from previously-compiled county statistics, and are the same type of stats used by the county health board in making decisions. [state stats] This last point - there is a community health center located in Helena that will take low-income patients on sliding-scale fees. What we heard a lot from low-inome residents is that the center was often booked up and unable to take on new patients. They offer both primary care and dental services. [state last stat]
  • So based on the type of stats seen in the last slide, and in light of the recent debates on national health care reform, the county health board passed a resolution in December 2008 declaring health care to eb a human right to all county residents. [read laguage from first point]. To implement the new mandate, the county created a Task Force on local Access to Universal Healthcare to begin a multi-phase implementation. Phase I was to conduct a health needs assessment. My ALE was involved with the QUALITATIVE data analysis for this health assessment, although there has also been another QUANTITATIVE component to the Task Force’s work that had nothing to do with my ALE, but which will be a part of my final report to the county.
  • To help with the county-wide needs assessment, the Task Force tapped the NESRI and the Montana Human Rights Network. [read slid data] NESRI’s job was to provide research guidance and technical assistance to the partners on the groundin Montana, as well as to analyze the qualitative data gathered by partners in Montana.
  • Poor availability of family doctors Available doctors may not accept Medicare/Medicaid, or may restrict their number of publicly-insured patients Praise for satellite clinic available in Lincoln
  • Qualitative Research on Health as a Human Right in Lewis & Clark County, Montana.

    1. 1. Implementing a Human Right to Health: a Qualitative Case Study Lewis & Clark County, Montana Purvi Pinakin Patel Candidate for JD/MPH Preceptor: Anja Rudiger, Ph.D National Economic & Social Rights Initiative (NESRI) New York, NY
    2. 2. Lewis & Clark County, Montana County Seat: Helena Year Organized: 1864 Square Miles: 3,461 Lincoln HELENA Augusta Canyon Creek
    3. 3. County Health Profile <ul><li>Population: 60,925 </li></ul><ul><li>21% lack health insurance </li></ul><ul><li>12% of adults unable to visit a doctor due to cost </li></ul><ul><li>29% live below 200% of the federal poverty level (FPL) </li></ul><ul><li>7% are on Medicaid </li></ul><ul><li>54% of Community Health Center clients were uninsured in 2004 </li></ul>
    4. 4. December 2008 Resolution: Health Care as a Human Right
    5. 5. Needs Assessment Partners <ul><li>National Economic & Social Rights Initiative (NESRI) </li></ul><ul><li>New York, NY </li></ul><ul><li>Anja Rudiger, Ph.D </li></ul><ul><li>Dir, Human Right to Health Program </li></ul><ul><li>Expertise: </li></ul><ul><ul><li>Training & technical assistance </li></ul></ul><ul><ul><li>Research, analysis and documentation </li></ul></ul><ul><li>Montana Human Rights Network (MHRN) </li></ul><ul><li>Helena, MT </li></ul><ul><li>Kim Abbott, </li></ul><ul><li>Project Liason </li></ul><ul><li>Expertise </li></ul><ul><ul><li>monitoring and reporting on the activities of the radical right-wing groups in Montana </li></ul></ul><ul><ul><li>organizing local human rights groups & policy initiatives </li></ul></ul>
    6. 6. Using a Human Rights Framework <ul><li>Universality: Must be afforded to everyone, without exception. </li></ul><ul><li>Indivisibility: Are indivisible and interdependent </li></ul><ul><li>Participation : People have a right to participate in how decisions are made regarding protection of their rights. </li></ul><ul><li>Accountability: Governments must create mechanisms of accountability for the enforcement of rights. </li></ul><ul><li>Transparency: Governments must be open about all decision making processes related to rights. </li></ul><ul><li>Non-Discrimination : Human rights must be guaranteed without discrimination of any kind. </li></ul>
    7. 7. Methodology <ul><ul><li>Initial Targets: </li></ul></ul><ul><ul><li>10 focus groups, 1-2 hours ea. </li></ul></ul><ul><ul><li>5-10 participants/group </li></ul></ul><ul><ul><li>Sampling framework (by geography & demographics) </li></ul></ul><ul><ul><li>Discussion protocol (past experiences, human rights framework) </li></ul></ul>
    8. 8. Participants Group Date # Participants Helena - Task Force 8/17/09 3 Helena - YWCA 8/17/09 7 Canyon Creek 8/19/09 2 Lincoln 1 8/20/09 2 Augusta 8/25/09 13 Helena - FoodShare 10/13/09 10 Lincoln 2 10/14/09 3 Helena 4 11/5/09 7 TOTAL 47   AGES # 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%
    9. 9. Participant Demographics <ul><li>Education Level </li></ul><ul><li>Income </li></ul>  Education Level number percentage no 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%
    10. 10. Health as a Human Right <ul><li>Access: Cost & Financing: </li></ul><ul><li>Affordability - based on ability to pay </li></ul><ul><li>Equity - resources allocated and used according to needs and health risks </li></ul><ul><li>Comprehensiveness - all screening, treatments, therapies and drugs needed to preserve & restore health </li></ul><ul><li>Availability of Services: </li></ul><ul><li>Adequate health care infrastructure (e.g. facilities, trained professionals) </li></ul><ul><li>Adequate services (e.g. primary care, mental health) </li></ul><ul><li>Transportation </li></ul><ul><li>Quality of Care: </li></ul><ul><li>medically appropriate </li></ul><ul><li>timely, safe, and patient-centered </li></ul><ul><li>Acceptability and Dignity in Treatment: </li></ul><ul><li>culturally appropriate (gender, age, culture, language, etc.) </li></ul><ul><li>protect confidentiality </li></ul>
    11. 11. Key Findings : Access: Cost & Financing <ul><li>Affordability of insurance coverage </li></ul><ul><li>Employer-sponsored insurance plans can have such high deductibles or co-pays </li></ul><ul><li> virtually impossible for patients use services. Patients forgo routine, preventative care </li></ul><ul><li> health care services only for emergencies. </li></ul><ul><li>Even premiums for cheaper private insurance seem too expensive </li></ul><ul><li>Access to needed services for high-risk patients with pre-existing conditions may not be affordable because of the increase in cost of insurance. </li></ul><ul><li>Expenses for Service </li></ul><ul><li>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 </li></ul><ul><li>Lack of alternative financing options for low-income patients </li></ul><ul><li>(i.e. sliding scale fees or payment plans). </li></ul><ul><li>Participants knew others who: </li></ul><ul><li>Would not take medications because they could not afford to pay for them </li></ul><ul><li>Felt it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden. </li></ul><ul><li>Legal concerns </li></ul><ul><li>having to go to court to get bills paid </li></ul><ul><li>Being concerned about financial consequences about not answering bill collectors </li></ul>“ We’re Medicare, and it’s wonderful. It’s wonderful. I mean I wish everybody in the country had it.” -- 2 nd Lincoln Focus Group
    12. 12. Key Findings : Availability of Health Care <ul><li>Shortage: </li></ul><ul><ul><li>Family doctors/primary care </li></ul></ul><ul><ul><li>Specialists (coverage/out-of-network) </li></ul></ul><ul><ul><li>Ambulance/emergency services </li></ul></ul><ul><li>Geographic Isolation/Transportation </li></ul><ul><li>Concerns about Navigability of the Health System </li></ul><ul><li>“ 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.” </li></ul><ul><ul><ul><li>-- YWCA Focus Group </li></ul></ul></ul>
    13. 13. Key Findings : Quality of Care <ul><li>Positive feedback </li></ul><ul><li>Excellent WIC </li></ul><ul><li>Lincoln clinic great </li></ul><ul><li>Foodshare program </li></ul><ul><li>Voluntary ambulance (Lincoln & Augusta) </li></ul><ul><li>Negative feedback </li></ul><ul><li>Hospital </li></ul><ul><ul><li>Long waiting times in the ER, expensive care, poor quality </li></ul></ul><ul><ul><li>Bad testing for serious symptoms, poor diagnosis </li></ul></ul><ul><ul><li>Respondents feel providers care more about payment than patients </li></ul></ul><ul><li>Communication between providers </li></ul><ul><li>“ 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.’” </li></ul><ul><ul><ul><li>Taskforce Focus Group </li></ul></ul></ul>
    14. 14. Key Findings : Acceptability & Dignity <ul><li>“ 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.” </li></ul><ul><ul><ul><li> YWCA Focus Group </li></ul></ul></ul><ul><li>Respondents, particularly low income participants, expressed concern about being treated with respect by health providers. </li></ul><ul><li>Participants related stories they knew, people would </li></ul><ul><ul><li>not take medications because they could not afford to pay for them </li></ul></ul><ul><ul><li>feel it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden. </li></ul></ul><ul><li>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. </li></ul>
    15. 15. Is Health/Healthcare a Human Right? <ul><li>The majority of participants considered health care as a human right (60%) </li></ul><ul><ul><li>More rural residence often felt that health care came with a degree of independent responsibility </li></ul></ul><ul><ul><li>Medicaid and Medicare participants generally agreed that health care was a human right. </li></ul></ul><ul><ul><li>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. </li></ul></ul><ul><li>Several others emphasized ethical obligations to meet health care needs, but did not feel comfortable using the term “human right.” </li></ul><ul><li>To have a healthy community, Government OR community members needed to help everybody to be healthy </li></ul><ul><ul><li>“ I think it should be a right but it comes with responsibilities.” (Lincoln 2) </li></ul></ul>“ 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)
    16. 16. Recommendations <ul><li>Expand health services, particularly primary care </li></ul><ul><li>Improve care-coordination </li></ul><ul><li>Improve navigability of health services </li></ul><ul><li>increase transportation options (ex: buses for the elderly) </li></ul><ul><li>Expand hours or reserve some business hours for off-peak times </li></ul><ul><li>Expand financing options </li></ul><ul><li>(uniform pricing, flexible financing, etc.) </li></ul>
    17. 17. Limitations <ul><li>Sampling framework </li></ul><ul><ul><li>Actually recruiting groups as per framework </li></ul></ul><ul><ul><li>Uniformity in group sizes </li></ul></ul><ul><ul><li>Lack of participants between 35-44 years-old </li></ul></ul><ul><li>Concern with moderation by newly trained task force members outside of NESRI </li></ul><ul><li>Distinguishing prejudice from personal frustrations and resentment over healthcare </li></ul>“ 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
    18. 18. <ul><li>Anja Rudiger </li></ul><ul><li>NESRI </li></ul><ul><li>Victoria Grant </li></ul><ul><li>NESRI </li></ul><ul><li>Kim Abbott </li></ul><ul><li>Montana Human Rights Network </li></ul><ul><li>Martha Davis </li></ul><ul><li>Northeastern University School of Law </li></ul><ul><li>Marcia Boumil </li></ul><ul><li>Tufts University School of Medicine, Dept. of Public Health & Professional Degrees </li></ul><ul><li>Pat Hennessey, Billie Miller, and Bob Putsch </li></ul><ul><li>Lewis & Clark County Task Force on Universal Access to Healthcare </li></ul>Acknowledgements
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