Cancer Health Disparities Network (CDRN) Cohort
The aim of this study is to evaluate the feasibility of recruiting, collecting survey and biospecimen data, and following a cohort of 450 diverse individuals from underserved populations from various geographic areas of the United States. This study proposes to establish the Cancer Disparity Research Network (CDRN) Cohort, a resource for studies of factors related to cancer incidence among underserved populations. The CDRN Cohort will pool data and initiate new studies not previously undertaken in underserved populations. Targeted underserved populations that will compose the CDRN cohort will be recruited by research teams from the following study sites:
- The Ohio State University Comprehensive Cancer Center (100 residents of Appalachia)
- University of Illinois at Chicago (100 Hispanics)
- Fox Chase Cancer Center (Philadelphia, PA) (100 African Americans)
- University of Pennsylvania (50 African Americans)
- Tufts Medical Center (100 Asians)
The Ohio State University Comprehensive Cancer Center is the Coordinating Center for the CDRN cohort feasibility study. The goals of the Tufts study site are to:
- Recruit 100 Asians to the CDRN cohort
- Collaborate with the CDRN Coordinating Center to refine study procedures, forms, questionnaires, and process for collecting and mailing biospecimen data.
- Interact with the other cohorts/study sites to conduct two pilot studies:
- Determine the impact of the Affordable Care Act (ACA) on cancer prevention and screening behaviors; and
- Explore the response to chronic stress (telomere length and Tumor Necrosis Factor (TNF) and C-reactive protein (CRP) concentrations) with the characteristics of cancer risk profiles for each of the populations and the cohort as a whole.
Insurance Instability and Disparities in Chronic Disease Outcomes
Racial and ethnic health disparities in the processes and outcomes of chronic disease care are pervasive, well documented, and consistently linked to health insurance coverage. Insurance instability (the frequency of switches in insurance coverage or gaps without coverage), may contribute to disparities in outcomes of chronic disease care. With the explicit goal of reducing disparities, Massachusetts (MA) Health Insurance Reform has now extended comprehensive health insurance coverage to 98% of the state’s residents, with disproportionately greater gains in coverage among racial/ethnic minorities and the poor. To examine if MA insurance reform has lessened health disparities through increased insurance stability, our specific aims are:
- To examine changes in insurance instability pre- and post-reform, overall and comparing racial/ethnic specific minority populations to whites. We hypothesize that (a) Insurance instability decreased in the post-reform period and (c) Insurance instability decreased more for racial/ethnic minorities.
- To examine whether patients receiving care post-insurance reform had better processes of chronic disease management and improved health outcomes, compared with patients receiving care pre-insurance reform, and whether such patterns vary by race/ethnicity. We hypothesize that improvements in processes and outcomes of chronic disease management were greater among racial/ethnic minorities who benefited the most from insurance reform, resulting in reduced disparities.
- To assess whether patients with more favorable insurance stability had better processes of chronic disease care and improved health outcomes compared to patients with less favorable insurance stability, and whether racial/ethnic minority patients experienced disproportionately greater gains. We hypothesize that greater insurance stability will be associated with improved processes and outcomes of chronic disease management, resulting in reduced disparities.
We will assess the processes and outcomes of care for six highly prevalent, chronic conditions before and after the implementation of MA Health Insurance Reform: diabetes, hypertension, hyperlipidemia, congestive heart failure, asthma, and chronic obstructive pulmonary disease. We will utilize existing electronic medical records on over 110,000 subjects from Boston Medical Center and eight of its affiliated federally qualified Community Health Centers, the largest safety net institution in New England that serves African American and Hispanic communities, and Tufts Medical Center, which serves a large Asian American community in Boston’s Chinatown. When the study is completed, we will provide empiric data on the direct impact of insurance reform and insurance instability on health disparities in multiple populations.
Partners on this project include Multi- Principal Investigator Dr. Nancy Kressin (Boston Medical Center), Dr. Amresh Hanchate, co-Investigator (Boston University School of Medicine), Dr. Norma Terrin, co-Investigator (Tufts Research Design Center/Biostatistics Research Center), and Dr. Tracy Battaglia, co-Investigator (Boston Medical Center). This work is supported by the National Institute on Minority Health and Health Disparities.
Dr. Amy LeClair’s Studies
30-Day Readmissions at Tufts Medical Center
This is a qualitative study to examine the medical and socioeconomic factors contributing to 30-day readmissions. The data collection for adults is currently complete. We are now piloting this study with the pediatric department to understand unique factors in the pediatric patient populations.
CTSA Consortium SRC pilot study
This NCATS funded study assesses the implementation and use of in the recommended Scientific Review Committee (SRC) process developed by the SRC Working Group. Scientific review is distinct but complementary to IRB review. The goal of the SRC is to review studies for scientific merit and feasibility. This pilot study is attempting to implement this review process at 10 CTSA hubs and assess the barriers and facilitators to its implementation and use.
Stakeholder and Community Engagement (SCE) in Early Stage (T1) Translational Science
Four CTSA hubs have come together to develop a framework for stakeholder engagement in the early stages of translational science.
Together for Child Wellness
With support from the Deborah Munroe Noonan Memorial Research Fund, this study aims to understand the barriers and facilitators to diagnosis and treatment of Autism Spectrum Disorder (ASD) in children from Chinese immigrant families. Chinese children with ASD tend to be diagnosed later than their non-Chinese peers and experience significant delays in linking to care. By understanding the perspectives of both parents and providers we hope to inform an intervention to address these delays in a culturally competent and relevant manner.
Dr. Elena Byhoff’s Studies
Screening for Social Determinants of Health in Massachusetts
Health Centers are nonprofit organizations that provide health and other related services to residents in medically underserved areas. Social Determinants of Health (SDH) are defined as the circumstances, in which people are born, grow up, live, and work. There is a well-documented relationship between SDH and health outcome. Despite the prevalence of unmet social needs that disproportionately impact health when compared to other aspects of medical care, we understand relatively little about how best to recognize and address such needs. Even less is known about the landscape of current SDH screening practices. Our proposed study will address this gap by characterizing SDH screening practices in health centers throughout Massachusetts. By understanding and comparing current practices across all health centers in the state, we can identify heterogeneity in screening, which can facilitate targeted improvement in practices across the state.
Longitudinal Follow-up to the National Faculty Survey
In 1995, over 1,900 academic faculty from 24 medical school completed the National Faculty Survey (NFS). Under the leadership of Phyllis Carr MD as PI, the NFS collected information about demographics, professional goals, academic environment, perceptions of bias, discrimination, and harassment, compensation, and work/life balance. The original survey provided seminal data on recruitment, promotion and retention of women and underrepresented minority faculty in academic medicine.
In 2011- 2012, we invited 1,300 faculty members from the original survey to complete a follow up survey. The data serves as the first longitudinal follow up of a nationally representative sample of faculty in medical schools. The specific aims of the project are:
- To measure longitudinal career outcomes for women compared with men, and under-represented minority women faculty compared with majority women, along the following domains:
- Satisfaction with academic career
- Productivity, including grants and publications
- Academic rank
- Identify how individual (e.g., hours of work, family responsibilities), institutional environment (e.g., support, work environment) and factors that intersect the individual and institution (e.g., racial discrimination, sexual harassment) are associated with career advancement outcomes form women compared with me, and for under-represented minority women compared with majority women.
We also conducted key informant interviews with administrative faculty at the medical schools to collect information regarding institutional policies and practices that differentially facilitate or impede faculty advancement based on gender or under-represented racial/ethnic minority status.
Partners on this project include Multi- Principal Investigator Dr. Phyllis Carr (Massachusetts General Hospital), Dr. Norma Terrin, co-Investigator (Research Design Center/Biostatistics Research Center), Dr. Samantha Kaplan, co-Investigator (Boston University), and Dr. Anita Raj, co-Investigator (University of California, San Diego). Dr. Carr was the Principal Investigator of the 1995 survey. This work is supported by the National Institute of General Medical Sciences.
The National Patient Navigation Research Program
Dr. Freund serves as Chair of the Design and Analysis Committee of the National Patient Navigation Research Program (PNRP), an NCI funded cooperative group to conduct a controlled trial on the impact of patient navigation on timely cancer care in vulnerable populations. The PNRP looks at the impact of patient navigation interventions to reduce or eliminate cancer health disparities. The Avon Foundation provides additional support for the secondary analyses of the Patient Navigation Research Program (PNRP). Current research questions addressed through this initiative include:
- The impact of comorbidities on cancer care and patient navigation
- The influence of household size and composition on delays in cancer care, and the ability of navigation to ameliorate their impact
- Whether patient navigators with personal experience with cancer care are more effective in their position than navigators without cancer treatment experience
- Understanding which tasks that navigators perform are associated with best practices and more timely care for their patients
- The impact of patient navigation on the quality of breast cancer treatement
- The impact of patient navigation for patients with abnormal Pap tests.
- The impact of patient navigation in women with abnormal breast cancer screening
Patient Navigation Research Program Database
The national Patient Navigation Research Program recruited nearly 10,000 subjects with abnormal cancer screening, and over 2000 subjects with incident cancer and precancerous lesions into a controlled trial of patient navigation compared with the control of usual care. Subjects were predominantly from under-insured and minority populations. Subjects were recruited from nine centers (comprised of 21 local community health centers or ambulatory care sites). We collected clinical and patient navigation information for eligible participants 18 years and older who had an abnormal breast, cervical, colorectal, or prostate concerning screening result. Clinical information included type of screening abnormality, type and stage of cancer, dates and types of clinical services, and clinical outcomes. Patient navigation information barriers identified as part of the care delivery process, activities to address the barriers, and services provided are also in the database. Other information included race/ethnicity, gender, primary language, and health insurance coverage.
The program highly values collaborative research partnerships. Current collaborations include the following:
Collaborations within Tufts Medical Center
- The Center for Health Solutions – Susan Parsons, MD, MRP, Laurel Leslie, MD, and Carolyn Leung Rubin, EdD
- The Research Design Center/Biostatistics Research Center – Norma Terrin, PhD
- Lahey Clinic Medical Center – Zoher Ghoghawala, MD
- Addressing Disparities in Asian Populations through Translational Research (ADAPT)
- Asian Women for Health and the Asian Breast Cancer Project – Chien Chi Huang, MS
- Greater Boston Chinese Golden Age Center
- Boston University/ Boston Medical Center, Women’s Health Unit – Tracy Battaglia, MD, MPH, Bonnie Sherman, PhD, Sharon Bak, MPH, Ann Han, MPH
- Boston University/ Boston Medical Center, Health Disparities/Equity Unit – Nancy Kressin, PhD, Amresh Hanchate, PhD
- Boston University/ Boston Medical Center, Obstetrics and Gynecology – Samantha Kaplan, MD, Rebecca Perkins, MD, MSc
- Boston University/ Boston Medical Center, Pediatrics – Natalie Pierre Joseph, MD
- Texas A&M University – Carrie Byington, MD
- Massachusetts General Hospital – Phyllis Carr, MD
- University of California, San Diego – Anita Raj, PhD
- Ohio State University – Electra Paskett, PhD
- University of Arizona – Elizabeth Calhoun, PhD
- University of Illinois, Chicago – Julie Darnell, PhD
Tufts Breast Cancer Training Program to Reduce Health Disparities
Led by Drs. Karen Freund and Susan Parsons and supported by the Komen for the Cure Foundation, this training program provides a cadre of master’s and doctoral students with a broad understanding of Asian, specifically Chinese, breast cancer health disparities to conduct clinical and translational research to address the needs of Chinese American breast cancer patients and survivors. Asian Americans are the only racial/ethnic group in which cancer is the leading cause of death, and breast cancer is the most common type of cancer in Asian women. Tufts University School of Medicine and Tufts Medical Center (Tufts MC) sits within Boston Chinatown and provides care for this vibrant community, and for the surrounding Chinese immigrant communities in Quincy and Malden, MA, who use Chinatown as their cultural hub. This training program is in partnership with Tufts Cancer Center, Tufts Clinical Translational Science Institute (CTSI) and Tufts Sackler School of Graduate Biomedical Sciences.
List of Trainees – Tufts Breast Cancer Training Program
- Angie Mae Rodday, PhD, MS (2015)
Research Project: Assessing the Relationship between Self-Efficacy and Socio-economic Status Using the Communication and Attitudinal Self-Efficacy General Scale
- Jinghui Dong, PhD (2015-)
Research Project: Impact of Patient Navigation of Patient Acceptance of Recommended Breast Cancer Treatment
- Kimberly Esham, MD
Research Project: Uncharted Waters: Course and Correlates of Migratory Newly Diagnosed Breast Cancer Patients
Former Trainees – Program on Equity in Health and Science
- Anthony Kulukulualani, MD candidate
- Andre Vogel, Brown University undergraduate student
Program on Equity in Science and Health
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