Reducing Health Disparities through CommunityEngaged Research Carla BoutinFoster

Reducing Health Disparities through Community-Engaged Research Carla Boutin-Foster, MD, MS Associate Professor of Medicine Associate Professor of Public Health Director, Center of Excellence in Disparities Research 1

Overview • Provide a brief overview of health disparities • Describe the development of the Center of Excellence in Disparities Research and Community Engagement (CEDREC) • Discuss lessons learned in the process of conducting community-based research 2

Definition of Health Disparities “Health disparities are differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific (racial and ethnic, cultural, gender) populations in the United States. ” (NIH) Populations in which disparities exist experience worse outcomes for chronic conditions, have higher health care cost, experience lower quality of life 3

The Scope of Health Disparities • • Cardiology Pulmonary Renal Infectious disease Gastroenterology Clinical epidemiology Surgery 4

Cardiologists African-American patients compared with white patients have lower odds of undergoing CAD procedures, cardiac catheterization or PTCA A few studies noted that Hispanic and Asian patients were also disproportionately less likely to receive such procedures. Conflicting results regarding patient refusals as a source of racial variation. Less-educated patients and patients who were not as experienced with the procedure were more likely to decline PTCA. Physician bias has also been associated with racial variation in recommendations for treatment. 5

Cardiologists Coronary heart disease death rates are higher for black males and females than their white counterparts Blacks are nearly twice as likely to have a first stroke and 1. 8 times more likely to die from one than whites High blood pressure is more prevalent and is associated with poorer outcomes in blacks than whites 6

Hepatology, GI, and ID • Epidemiology data demonstrate the prevalence of HCV higher in African Americans, Mexican Americans (only one Latino group) than Whites • Studies of peg-interferon and ribavirin, suggests a lower sustained virologic response (SVR) rate in African Americans and Latinos • Racial and ethnic differences may be due to intrinsic interferon signaling, HCV-specific T cell responses, viral kinetic response or cytokine production. Differences in body mass index, insulin resistance, steatosis, fibrosis and medication adherence. 7

Oncologists • Although cancer death rates have declined, the rate of decline is less in blacks • Black men have the highest incidence of prostate cancer and are more than twice as likely to die • White women have the highest incidence of breast cancer but Black women are most likely to die from breast cancer • Blacks have the higher incidence of advanced colorectal cancer and death rates 8

Oncologists • Only 25% of pharmacies in nonwhite neighborhoods had opioid supplies as compared with 72% of pharmacies in white neighborhoods • Among outpatients with metastatic cancer, 65% of the minority patients did not receive recommended guidelines compared with 50% of nonminority patients 9

Pulmonary • Higher rates of asthma are consistently found among certain minority racial/ethnic groups, particularly African American, American Indian and Puerto Rican populations • Worse asthma control • Higher rates of asthma exacerbations and missed days from school or work • Greater rates of emergency department (ED) utilization • Higher mortality rates 10

Renal • The rate of diabetic ESRD is 2. 6 times higher among African Americans than among whites. • ESRD is more likely to be related to type 2 diabetes among African Americans than it is among whites • Rates of early stage kidney disease (proteinuria) are higher among Hispanic Americans, African Americans, and American Indians than among the white population 11

Surgery • Disparities exist in total joint replacements • Racial and ethnic minority patients may not be referred for surgery at same rate • Race is an independent predictor of poor, postoperative outcomes 12

OBGYN • Higher rates premature births • Lack of pre-natal care • Higher maternal mortality • Greater comorbid conditions in racial and ethnic minorities women of child bearing age • Higher rates of cervical cancer 13

Solutions to Health Disparities • Require looking beyond race and ethnicity and at the social context • Multidimensional research and policy interventions • Communities must be engaged and involved 14

Center of Excellence in Disparities Research Established in 2009, CEDREC’s mission is to improve minority health through interdisciplinary research, outreach, and training. This is implemented through 4 cores: Research To expand the capacity for conducting innovative health disparities research in Central Harlem and the South Bronx Education To train a diverse group of junior investigators to be able to conduct their own health disparities research Community Engagement To create new collaborations that will accelerate the dissemination of research findings, inform novel community based programs, and build community capacity for research Administrative 15

Research Core Research focuses on reducing health disparities in cardiovascular disease, hypertension, obesity, and colorectal cancer screening by focusing on factors that promote adherence to a healthy lifestyle. Study subjects are adults, largely African-American, recruited from medically underserved communities of the South Bronx and Harlem. Interventions are framed on social cognitive theory, self-efficacy theory, positive affect, self-affirmation theory, and motivational interviewing. 16

Community Engagement Outreach Core The Community Engagement Outreach Core provides a strong link to the community, and participates in research activities and program development. Hunter College School of Nursing Lincoln Medical and Mental Health Center Renaissance Health Care Network Center for Healthful Behavior Change-NYU (Black Men Initiative)

CEDREC Studies • Address chronic disease management and prevention • Community-based • Apply behavioral constructs 18

Community Setting • Patients in the community setting more closely mirror at-risk populations • Goal was to enroll more men who may not want to come to WCMC • Effects are generalizable outside academic setting where most physicians had some familiarity with research • Engages communities in academic research as way of increasing minority enrollment in clinical trials 19

CBPR as an approach A process of scientific inquiry in which community members, persons affected by the health condition, disability or issue under study, or other key stakeholders in the community's health, have the opportunity to participate in various stages of the study (design - conduct - analysis - interpretation conclusions - communication of results) 20

CBPR • Multidisciplinary - involves stakeholders from various sectors • Collaborative process • Action-oriented • Co-learning • Community enhancement / empowerment • Social transformation and change beyond research project 21

CBPR and Disparities Research Facilitate more effective dissemination of research findings to impact public health and policy Increase the potential for translation of evidence-based research into sustainable community change that can be disseminated more broadly 22

Positive Affect Positive affect is a mild happy affective state that can be induced through the receipt of unexpected and small gift items or by directing patients to focus on previous positive events. Positive affect enhances creative thinking, facilitates complex decision making, and problem solving. Positive affect may enhance self-efficacy by linking positive expectations with a task (more likely to complete a task). 23

Self-affirmation theory Thought processes are influenced by an adequate self-image, adequate perception of self. Self-affirmation can be induced through the active use of positive statements or memories about one's prior successes to build self-confidence. Self-affirmation enhances the ability to overcome negative expectations of one's ability by drawing on previous experiences of success, such as overcoming obstacles, which is associated with greater receptivity of health messages and behavior specific self-efficacy. 24

Motivational Interviewing Motivational interviewing is a patient-centered counseling technique designed to motivate patients to recognize and resolve the discrepancy between their present behavior and a desired future goal or outcome. Some general principles: (1) expressing empathy, by use of reflective listening; (2) developing discrepancy between client goals and current problem behavior; (3) avoiding argumentation by assuming that the client is responsible for the decision to change; (4) rolling with resistance, rather than confronting or opposing it; and (5) supporting self-efficacy and 25 optimism for change.

MISTER-B Multibehavior Intervention to Increase Screening and Enhance Risk Reduction in Black Men (MISTER-B) is a randomized trial conducted in barbershops targeting hypertensive black men over age 50 who have not had colorectal cancer screening. MISTER-B applies strategies to improve the rates of blood pressure control and colorectal cancer screening: therapeutic lifestyle counseling using motivational interviewing and peer counseling using trained patient navigators. 26

OASIS Osteoarthritis Symptom Improvement Study is designed to test a pilot intervention that uses self-affirmation and motivational interviewing as strategies for boosting intrinsic motivation and enabling patients to be more proactive in their management of osteoarthritis. Enrolling 60 patients from two academic practices and community setting. Supported by a grant from the Zimmer Foundation 27

TRIUMPH Study Trial Using Motivational Interviewing Positive Affect and Self-Affirmation in Hypertension (TRIUMPH) The objective of this study is to improve blood pressure control among African-Americans with uncontrolled hypertension.

Hypertension Disparities Compared to Caucasians, African-Americans: • Experience hypertension at an earlier age • Have higher morbidity and mortality rates • Have a 1. 8 times greater rate of fatal stroke, a 1. 5 times greater rate of heart disease death, and a 4 times greater rate of end stage kidney disease. 29

TRIUMPH Study Positive affect is a pleasurable state of mild happiness, enthusiasm, or alertness. Studies have shown that giving people unexpected gifts can induce this state. In this study we will use an approach in which patients are asked to think about the small things that make them feel good, things that cause them to smile.

TRIUMPH Study In addition, we will use a technique known as motivational interviewing that engages participants to reflect on barriers to taking their medications regularly, as well as a technique known as self- affirmation, where patients are asked to focus on proud moments on a daily basis.

TRIUMPH Study The TRIUMPH study is being conducted among 220 adult African-Americans: - who have a diagnosis of hypertension on their medical charts and are currently on antihypertensive medications - who have documented blood pressure readings above the recommended guidelines on more than two occasions on their medical charts

TRIUMPH Study Patients are recruited from the Renaissance Health Care Network sites as well as Lincoln Hospital’s ambulatory care practices. Eligible patients are consented and randomized to one of two groups: 1) Positive affect/selfaffirmation and motivational interviewing OR 2) Educational group.

TRIUMPH Study All participants in the study will receive: Educational workbook • Home blood pressure monitors • Blood pressure contract • The experimental group will receive: • Positive Affect / Self-Affirmation and motivational interviewing via telephone • Gifts every two months as a way to reinforce positive affect

TRIUMPH Study participants will be followed every 2 months for one year Outcome is blood pressure control at 12 months Secondary outcomes: medication adherence, depressive symptoms, and perceived stress

Lessons Learned • Engage community providers • Adapt recruitment strategies to the context • Reconsider policies • Respond to social determinants • Listen to community voices 36

Lessons on Engaging Community Practitioners “You want us to do what? ” An important aspect of conducing community based studies is to gain the support of the providers. Some of the reasons cited in research include: lack of trust, negative prior experiences with researchers, unclear incentives, and unrealistic expectations of researchers. Concerns that were raised in the process of TRIUMPH: Increased work load Disruption of work flow Perception of patients (that their blood pressure is not under control) 37

Engaging Community Practitioners Meetings have to align with their schedule. Carefully review the protocol with the clinicians in the proposed research setting. Change and adjust recruitment schedule to weekends and evenings. These practice sites are very busy and care for patients with multiple comorbid conditions. There was a need to cultivate research interest in the general practice (nurses, administrators, doctors). 38

Recruitment “Please do not approach patients in the waiting area” Borrow and negotiate space Work around their structure and clinical operations Incentives: “to give or not to give” Patient privacy - knew each other Separate recruitment table Bags with blood pressure cuffs (NOT out in the open) Attract participants: colorful bag with logo Participants had to come to us 39

Policy change “May I see some ID before you take these charts” Apply for IRB from the settings—they wanted to use their IRB for their patients, not Cornell’s Change in IRB practices Access to data (in the spirit of participatory research) Ownership of patient files 40

Responding to social determinants “These are real patients with real problems - they need real money. ” Change items for gifts Referrals to social services Transportation Transient living Participant lost jobs and could not take medications to continue with the study 41

Responding to community voices “Why aren’t there any Latinos in your study? ” Desire to have more studies focus on Latinos Community really were interested in diabetes, obesity, mental health as top priorities Child health (obesity) Study design match community interest Avoid widening gaps Develop creative solutions (conduct pilot studies) 42

Recommendations • Engage providers • Know the territory • Be flexible / Institutional policy change • Willing to relinquish hold • Involve practitioners • Patient incentives 43

Recommendations • Embrace CBPR paradigm • Understand social determinants • Hire and train community-based physicians to establish a presence (train community physicians for research) • NIH funding indirect equitable 44

Implications for Advancing Community Engaged Research • • Community academic trust Dissemination Implementation Move from explanatory to more pragmatic trials • Translational research • Uptake of guidelines 45

New Directions 46

Environmental Health Core The mission of the Core is to advance and accelerate transdisciplinary environmental health disparities research and strengthen community capacity to address environmental health issues through research and policy. Funded by a supplement to CEDREC to develop infrastructure for environmental health disparities research. 47

Goals Build community-academic partnerships with CBOs in environmental justice that will help to inform future studies: • Impact of residential segregation • Link environmental exposures and disparities • Link between genetics-environment-disparities • Impact of natural disasters on local communities preparedness and health effects 48

Clinicians, Behavioral Social Scientists, Epidemiologists Community Basic Scientists, Geneticists Biostatisticians 49