Harnessing novel data sources to understand patients’ perspectives (Preprint)

UNSTRUCTURED Patient perspectives are central to the U.S. Food and Drug Administration’s benefit-risk decision-making process in the evaluation of medical products. Traditional channels of communication may not be comfortable for all patients and consumers. Social media websites have increasingly been recognized by researchers as a means to gain insights on patients’ views about treatment and diagnostic options, the healthcare system, and their experiences living with their conditions. Utilizing multiple patient perspective data sources offers the FDA the opportunity to capture diverse patient voices and experiences with chronic pain. The FDA Office of Minority Health and Health Equity (OMHHE) and the Center for Devices and Radiological Health (CDRH) worked with INSPIRE (Clinica Health, Inc.) to conduct a pilot study exploring posts from INSPIRE’s own patient platform and several social media platforms to gain insights into the key challenges and barriers faced by chronic pain patients (CPPs). The most common topics discussed among CPPs were disease burden, support and advocacy needs, and proper diagnosis. The two most frequently discussed treatments were opioids or narcotics, and devices such as transcutaneous electrical nerve stimulation (TENS) machines and spinal cord stimulators. Success in pain reduction was tempered by concerns of stigmatization regarding opioid addiction and dependency. The study illustrates how social listening data may provide valuable insights into diverse patient perspectives, preferences, and unmet needs, especially for conditions that may be perceived as stigmatizing.

Mentoring in Medicine (MIM): Motivating and enabling disadvantaged youth to become the next generation of minority health professionals

Mentoring in Medicine, Inc (MIM) is a nonprofit health and science youth development organization based in the Bronx, NY. Founded in 2006 by three physicians and an engineer- trained entrepreneur, MIM’s organizational goal is to expose socioeconomically disadvantaged students to the wide variety of health and science careers and to increase the health literacy of their communities. It is aligned with the outreach mission of the U.S. National Library of Medicine (NLM) whose former Director, Donald A.B. Lindberg M.D., fostered an enduring relationship. Technical assistance, evaluation, and financial support provided under his leadership helped MIM to become a nationally recognized organization leading the field to diversify health careers and to increase health literacy in often hard to reach populations. Through live and virtual programming, MIM has impacted nearly 58,000 students, parents, and educators in urban epicenters in the U.S. The MIM Team has helped 503 students who were discouraged to build a competitive application and matriculate in health professional school. MIM has 88 press features highlighting its work in the community.

Methods Training to Advance Integrative Science on Minority Aging

Minority aging is an inherently interdisciplinary field. However, it can be difficult for early-career investigators to develop skills on how to integrate data sources, study designs, measurement approaches, and analytic tools from disparate fields into their research programs. This session will illustrate how the biopsychosocial framework has been used to structure the content and delivery of methods training related to minority health/aging research in two NIH-funded exemplar programs: the MCUAAAR Analysis Core, and the Michigan Integrative Well-Being and Inequality (MIWI) Training Program. This talk will illustrate how the 20-year history of MCUAAAR informed the development of MIWI, and how both initiatives approach early-career scientist training through: i) centering learning within a mentorship structure to model team science, ii) avoiding false dichotomizes and hierarchies in study designs and data sources, and iii) attending to the unique challenges faced by scientists working in minority health through knowledge sharing.

Basic behavioral science research priorities in minority health and health disparities

Achieving health equity among disparity populations has been a national, regional, and local priority for several years. Health promotion and disease prevention behaviors play an important role in achieving health equity; the first generation of behavioral science studies in minority health and health disparities have provided important insights about the nature and distribution of risk exposure behaviors in disparity populations. Interventions have also been developed to enhance health promotion and disease prevention behaviors using behavioral counseling, tailored health communications, and interventions that are developed collaboratively with community stakeholders. Although intervention development and evaluation are components of transdisciplinary translational behavior research, discovery science is a critical first step in translational research. Consistent with this, conceptual models and frameworks of minority health and health disparities have evolved to include multilevel determinants that include basic behavioral mechanisms such as stress responses and stress reactivity that have physiological, psychological, and behavioral components that are relevant to minority health and health disparities. This report describes priorities, opportunities, and barriers to conducting transdisciplinary translational behavioral research during the next generation of minority health and health disparities research.

Minority Health and Health Disparities in the 21st Century: A Review

Powerful, complex relationships exist between health and biology, genetics, and individual behavior, and between health and health services, socioeconomic status, the physical environment, discrimination, racism, literacy levels, and legislative policies. These factors, which influence an individual’s or population’s health, are known as determinants of health. Today, health disparity is taking an in depth look at the differences in health status between different social groups, gender, race, ethnicity, education, income, disability, and sexual orientation. While on the other hand, health inequality is looking at the unjust and unfair treatment one gets because of their socioeconomic status and demographic area. Such a wide array of differences in health inequality and disparity is what contributes to the United States ranking in the bottom of industrialized western nations when it comes to life expectancy rate, and infant mortality rate. Even though over the years there have been great improvements and changes, there is still more work to be done to make health and equality for all.

Association of Active Coping to Unfair Treatment with Perceived Stress and Depressive Symptoms in African Americans: MH-GRID Study

Background: Unfair treatment such as discrimination and racism contribute to depression and perceived stress in African Americans. Although studies have examined how responding to such treatment is associated with ameliorating depressive symptoms and levels of perceived stress, most do not focus on African Americans. The purpose of this study is to assess how talking to others in response to unfair treatment is associated with self-reported depressive symptoms and perceived stress levels in African Americans.Methods: A sample from the 2010-2013 Minority Health Genomics and Translational Research Bio-Repository Database was used and consisted of 376 African American adults aged 30-55 years old residing in the southern region of the United States. Linear regression models were used to assess the association between talking to others following unfair treatment, compared to keeping it to oneself, on self-reported depressive symptoms and perceived stress. The predictor variable was based on the question “If you have been treated unfairly, do you usually talk to people about it or keep it to yourself?” Results: Talking to someone after being treated unfairly was inversely associated with perceived stress (B: -3.62, SE: 1.14, p ≤ 0.05) and depressive symptoms (a: -3.62, SE: 1.14, p ≤ 0.05). Conclusions: African Americans who talked to others in response to unfair treatment had lower depressive symptoms and perceived stress than those who kept it to themselves. More outreach to African Americans regarding the importance of talk in response to exposure to unfair treatment is needed as a potential coping mechanism.