1. Addressing minority health access through community-based health literacy research Susan J. Shaw, Ph.D., University of Arizona

2. Todays Aims Theoretical overview Doing community-based health literacy research Health literacy findings for minority health access Barriers to medication adherence Food insecurity Recommendations Conclusions

3. Theoretical approach Political economy Culture as meaning: Changes over time (think slang, sagging, gender norms) Permeable boundaries Multiple, contradictory and overlapping Culture as practice: exploring cultural differences by looking at everyday behavior

4. Culture: Two definitions the integrated pattern of human behavior that includes actions, communication, beliefs, values and institutions (NCCC 2001) Learned patterns of thought (knowledge) and behavior shared by a social group and acquired through acculturation

5. Why culture and health literacy? What is health literacy? the ability to understand and act on a doctors instructions Culture influences health and health care: What causes disease and illness What is an appropriate treatment How to take care of yourself and prevent disease How the human body works (human physiology) What is appropriate doctor and patient conduct Perceptions of symptoms and emotional states.

6. There is no culture-free way to think about disease -- including the culture of science

7. Doing community-based health literacy research 1. Supporting medical interpreters 2. Community-based research design 3. Community buy-in is critical 4. Building vs. draining expertise 5. Doing community-based research with limited resources

8. Community-based Research Design Epi Surveys Medical Chart Data In-depth interviews, focus groups, home visits, chronic disease diaries CHC Pts & HCP s Quantitative Methods Data Collection Qualitative Methods Data Collection

9. Community-based research design Focusing on topics generated by clinic staff/patients Prospective/longitudinal design, not experimental Designing research protocols in conjunction with clinic screening methods were developed in response to input from clinical staff (medical assistants and medical interpreters) Staff identified methods to protect participant confidentiality and promote trust

10. Community buy-in is critical Clinic staff (including administrative supervisors) provided full endorsement of research and showed great interest in research topic and process Hiring clinic staff provides opportunities to expand skills & experiences Community members feel that the study is addressing a real community need; one they can relate to from personal experience.

11. Building vs. draining expertise Pros and cons of hiring clinics medical interpreters as outreach interviewers Building research expertise among trained interpreters (bilingual, bicultural) Draining expertise from clinic (experienced interviewers)

12. Where to cut? Community-based research with limited resources Research design originally included 5 ethnic groups After a 29% budget cut, could not sustain translation & personnel costs How to decide which group to exclude? Actively seeking funding to include them in future research

13. Longer term research goals Sustain community involvement Ethnographic interviews to address new and emerging community-identified themes Actively collaborate with community and agency staff to: Build community capacity for research Transfer research staff to programs Integrate research tasks with EMR

14. Research site: Caring Health Center, Springfield, MA Springfield: pop. 157,000 Section 330 community health center Medically underserved, refugee resettlement area >50% of CHCs adult patients require translation services Black 34% Hispanic 37%

15. Methods Overview Multi-method design combining qualitative and quantitative approaches to data collection Self-report survey (Baseline, 12 months) Health literacy Cancer screening attitudes Chronic disease self-management (diabetes, HTN) Medical Chart Abstraction (Baseline, 12 months)

16. Methods Overview Qualitative methods (subsample) Formative focus groups (n=47) In-depth interviews (n=35) Chronic Disease Diaries (n=15) Home Observations (n=12) Triangulation of qualitative data with survey data and chart abstraction data

17. Instrument Development We adapted existing scales for health literacy and acculturation for use in four ethnic groups (African- American, white, Latino, and Vietnamese) by: Conducting focus groups with members of each ethnic group to generate culturally relevant terms Translating existing scales into Spanish and Vietnamese where needed Pre-testing revised scales with members of the target populations.

18. Sample Overview (n=273) 83% of Latino (PR) participants speak Spanish at home 34% of participants had <8th grade ed. 67% rated their health as fair to poor 59% are disabled 74% estimate their household income between $400-1,200/mo. n=100 n=87 n=64 n=40

19. Health literacy findings on minority health access Barriers to medication adherence Fears and beliefs about medications Formulary changes Food insecurity

20. Fears and Beliefs about Medications Lack of trust Denial that Im sick Fear of side effects Fear of addiction

21. Lack of trust in medicines A: This is called Actoplus Met [oral diabetes med]. I dont take it regular either. I think I have a denial factor that Im sick. Q: So you dont take your medication regularly? A: I dont. Q: Why not? A: Because I dont really know if it does anything. It dont seem to do anything anyway. …I know my familys after me to take it. My daughter especially, she wants me to take it. But I just dont feel any differently when I do. And we dont even know if the medication is real or not real. I was just watching the episode on 60 Minutes about the fake medicine. That really opened my eyes and I dont like it. Who knows what it is?

22. Fear of side effects The first medication that she gave me I had to leave them, because when I would take them I would get a really bad reaction. I would get really nervous, plus my heart would beat too fast! Pum pum pum pum! And I would get so bad that I wouldnt take them. I took them twice and I didnt want them anymore.

23. Fear of side effects Q: I wanted to follow up on what you were telling me about when you stopped taking your insulin for a year? A: Yeah, my kidneys were failing and I swelled up like a balloon. And I said, Ive been on this insulin and Im getting sick too. When I stopped taking my insulin, my kidneys started working little by little. And now my kidneys are working. I guess it was... probably the kind of insulin it was! Because [my] doctor told me both my kidneys were failing. They was gonna be putting me on dialysis, or a kidney transplant. And I told them I dont want neither. I said, when Im meant to die, let me die, cause I, I didnt want to be on no machine and I dont want nobody elses kidney. You know. And for some reason, its like God gave me a second chance. I guess God gave me this chance to look out for my family, I think.

24. More side effects P2:...my back hurts, it hurts to get up in the morning. I can't get out of bed and I have arthritis in my spinal column. Everything would hurt for me, but it wouldn't hurt that much. I don't like to take pills. Q: And what is it that you don't like about taking your pills? P2: I don't know. It's like I have a fear of how my body is going to react. Maybe its from an experience that I had, of pills that I took and I felt, I don't know, that it wasn't me. And I am afraid of that. … P3: Let's just say it, there are pills that in one way make you better but in another hurt you. Because even Advil is bad for your liver. P4: True. The way that you take them and the quantity... P3: It's no good, and you never know how much. … P2: You are helping you there and hurting you here. P3: That's how it is.

25. Fear of addiction A: I dont know if Im right or wrong but it seems to me that us black folk, we dont tend to want to take a lot of medicine. We dont wanna become… My mother always [used to say], yeah, you get addicted to this. You get addicted to that. Like, she takes a sleeping pill but I dont give it her. Her doctor recommends it but I dont give it to her every night because she dont need it every night. You know what Im saying? She dont need it. You know, shes 84 and shes tired. Shell go to sleep. Now that shes in the [beginning] forms of dementia, she remembers, I didnt get my medicine. And I say, Mom, you know, I dont think you need it. I dont know if thats right or wrong, but I dont see the need for her to have to take a sleeping pill every night.

26. Passed under Gov. Romney in 2006, MA health care reform mandated individual health insurance coverage for all state residents Minimally creditable coverage Fee (tax?) for those who are uninsured (~$3200/yr.) Expanded Medicaid (MassHealth) eligibility for children and some special populations The Connector: the on-line state-run exchange, a marketplace for health insurance plans Cost control measures: Massachusetts health care reform

27. Two years after implementation, costs exceeded estimates by $150m Cost control measures: Churning the rolls Formulary changes Bureaucratic disentitlement (Danz 2000) Insurance coverage increased to 97+%, but Racial/ethnic disparities in health coverage and access remain 7% of Black and 10% of Hispanic Springfield residents were uninsured in 2009, compared to 5% of whites, and to 1.9% of all MA residents (MDPH 2009). Hispanics in Springfield were twice as likely as whites to report that they were unable to see a doctor because of cost (MDPH 2010b). Massachusetts health care reform in practice

28. Effects of formulary changes Provider 2: One barrier … is health insurance. Because, you see, insurances, some of them have specific medications they will pay for, like.... MassHealth doesnt cover this particular diabetic med … And so they have to switch to something else, which doesnt work as well. Provider 3: Thats why they lose control. Thats when they lose track. Provider 2: And then the patients are frustrated because they think, well, that one used to work so well but they dont pay for it. Susan: And thats when they lose control of their blood sugar? Provider 3: The blood sugar, everything! The tracking, everything! Because they change so much their medication so often they may be taking their meds twice a day instead of once. They lose control. They get tired. They dont want to do it anymore.

29. Responses to formulary changes Hoarding pills Trading pills with friends Substitute over-the-counter for prescription medications

30. Formulary changes & lack of trust A: When I had the colonoscopy done... the doctors prescribed me that Prevacid. I took it to the pharmacy, and the pharmacy says the insurance wont cover it. And that seems like, well why would they give me a prescription if you cant honor it? Either it costs too much or youre second-guessing the doctor and youre thinking I dont need it. So, thats counter-productive to me. I think the insurance company should…not look at it from a dollar sign point of view. [They should] call the doctor who prescribes the pill and talk with him, and [that would] cut down on me going back and forth and in the meantime I have nothing to take in place of it. So Im losing valuable time and then I have to suffer, until the problem [is] rectified.

31. Food insecurity is widespread %

32. Food insecure people have less access to health care… χ 2 =6.39; p<.04χ 2 =44.42; p<.0001

33. …are more likely to be overweight/obese, 84.9% of participants who are food insecure are overweight, obese or morbidly obese (BMI >25)

34. …and have more complications from diabetes

35. Food insecurity and medication nonadherence A: See, right now I got a problem. My ex-wife lost her job, right? And I got kids by her, right? So Ive been trying to stretch my money buying groceries over there, helping her out, and buying groceries for me, but I, I aint got enough for myself, you know. … So, sos what I do is buy one big compra [a purchase], and I bring it to her house if I could eat it over there while she cooks. But my kids, they eat, they eat, and they eat. And the groceries go quick, you know... Like, last month, I had to borrow her, her car insurance money, right? To buy groceries for that month and then pay it back so she can pay for her car insurance, you know …

36. …medication nonadherence, cont… … Sometimes Im dont take my insulin, because Im scared I might get a insulin stroke, when it, when [my blood sugar] gets too low... but thats between you and me. I wont shoot my insulin, you know, when Im scared-- if I take it I might go into insulin shock and maybe die, you know? And my kids dont see that, you know? I try to do the best I can. [voicing his kids concern] Oh, you didnt take your insulin today. They fight with me you know? [But they dont understand that] theres a reason I dont take it sometimes.

37. Coping responses to food insecurity Modifying medication Modifying diet Social support (family) Charity (soup kitchens, food pantry)

38. Recommendations for Clinicians and Researchers Refer low-income patients to resources such as food stamps to mitigate food insecurity Provide additional supports (e.g., diabetic supplies) to address increased risk of barriers to health care access Elicit and address patients fears and beliefs about medications to find points of cultural consonance Brainstorm culturally-appropriate solutions to common health literacy challenges (e.g. Rx list cards for the wallet)

39. Concluding thoughts Community-based minority health research is an effective way to: Build community research capacity Produce usable findings Strengthen community-campus partnerships Cost control measures such as formulary changes and churning the rolls negatively affect patients ability to adhere to their chronic disease medications Widespread fears and concerns about medications may be exacerbated by cost control measures

40. Concluding thoughts, cont. Food insecurity is associated with limited access to health care, increased obesity, and more complications from diabetes Economic barriers intersect with and exacerbate other cultural barriers and health beliefs Separating cultural from economic barriers can be difficult: sometimes cost, not culture, is the most important factor

41. Acknowledgments This research was supported by grant #R01CA128455. Co-authors: Julie Armin, ABD, School of Anthropology, Research Assistant James Vivian, PhD, University of Connecticut Medical Center, Data Analyst Cristina Huebner Torres, MA, Caring Health Center, Project Director Special thanks to the providers, staff and patients at Caring Health Center for sharing their expertise.

42. Background Previous research Culturally appropriate health care Community health advocate program (WtW)