What if we were equal: Contextual factors to understanding (and explaining) pain disparities

1. What if we were equal: Contextual factors to understanding (and explaining) pain disparities Tamara Baker, PhD Professor of Psychology Director of Gerontology University of Kansas 21st IAGG World Congress of Gerontology and Geriatrics IAGG Pre-Conference Workshop Pain & Aging: Measurement, mechanisms, and management July 23, 2017 Dr. Tamara Baker University of Kansas

2. DISCLOSURE I have no relevant commercial relationships to disclose.

3. objectives • Identify patient, provider, health care system, and regulatory barriers to effective pain management • Identify care and research-based pathways to examining pain disparities • Explore determinants of health and intersectionality models to address disparities in pain management and research • Discuss implementation strategies in acknowledging pain disparities

4. pop quiz! 1. Documented disparities in pain has primarily focused on an individual’s_________. • Race • Ethnicity • Age • Gender • Socioeconomic status • All the above 2. Pain treatment disparities are primarily based on which variable? • Patient-related • Provider-related • System-related • Policy-related • All the above 3. Pain disparities is the result of inequities? • True • False • Maybe • I don’t know 4. Why is learning about pain disparities important?

5. “Roslyn Lewis of Tuscaloosa, AL was at work at a dollar store, pushing a heavy cart of dog food, when something popped in her back: an explosion of pain. At the emergency room the next day, doctors gave her Motrin and sent her home. Her employer paid for a nerve block that helped temporarily, numbing her lower back, but she could not afford more injections or physical therapy. A decade later, the pain radiates to her right knee and remains largely unaddressed, so deep and searing that on a recent day she sat stiffly on her couch, her curtains drawn for hours. Several patients…, said they thought that doctors had mistreated them, but that it had happened because they were poor or uninsured, not because they were Black. Finding Good Pain Treatment is Hard. If You’re Not White, It’s Even Harder By Abby Goodnough Aug. 9, 2016

6. implications • Shows a persistent problem among diverse race groups: • receive less treatment for pain • suffer more disability • lack of insurance coverage • racial bias, discrimination, and stereotyping • Blacks have been affected by the prescription opioid epidemic at "much lower rates" than whites • Blacks are 34% less likely than whites to be prescribed opioids for back pain, abdominal pain, and migraines • 14% less likely to be prescribed opioids for pain from traumatic injuries or surgery • Pharmacies in poor white neighborhoods are 54 times as likely as those in poor minority neighborhoods to have "adequate supplies" of opioids • 54% pharmacies in minority neighborhoods carried sufficient supplies of opioids, when compared to 87% pharmacies in predominantly white neighborhoods • In 2014, 71 out of every 1 million white Americans died of prescription opioid overdose, compared with 33 out of every 1 million black Americans

7. 2 INROADS ASPMN, Overcoming disparities in pain management: Beyond the decade pf pain, 2010

8. disparities • Differences in the incidence, prevalence, mortality, and burden of diseases and other adverse health conditions that exist among specific population groups (NIH)…within and between • Negatively affect groups of people who have systematically experienced greater social and/or economic obstacles to health. • These obstacles stem from characteristics historically linked to discrimination or exclusion • age, race, ethnicity, religion, socioeconomic status, gender, mental health, sexual orientation, or geographic location. Other characteristics include cognitive, sensory or physical disability • Disparities extend to the prevalence, treatment, progression, and outcomes of pain-related conditions • pain epidemiology, access to quality care, pain assessment, treatment and pain-related outcomes, disparities in emergency medicine, postoperative pain, chronic noncancerous pain, arthritis pain, palliative care • Determining the mechanisms underlying these disparities is important in reducing and eliminating disparities

10. Regions of poverty lack geographic access to pharmacies to certain pain medications • Pain treatment disparities underemphasized in most pain advocacy programs • Targeted educational campaigns and public health ‘pain disparities marketing programs’ are missing from pain advocacy campaigns • Ability to track pain disparities (globally), monitor efforts to reduce them, and compare findings across studies is limited due to lack of consist data collection (particularly on race and ethnicity) • Direct and indirect costs of pain disparities ~ $1.24 trillion • Total NIH budget across all institutes devoted to health disparities ~$2.8 billion • Lack of insurance and underinsurance are structural barriers to achieving pain equity among diverse groups and poor

11. Policy

12. inequities • Health inequities are ‘systematic, avoidable, unfair and unjust’ differences in health status and mortality rates and in the distribution of disease and illness across population groups. They are sustained over time and generations and beyond the control of individuals ~Margaret Whitehead (Department of Public Health, University of Liverpool)

13. Disparities

14. …inequities in health, avoidable health inequalities, arise because of the circumstances in which people grow, live, work, and age, and the systems put in place to deal with illness. Complex, integrated, and overlapping social structures and economic systems that are responsible for more health inequities. These social structures and economic systems include the social environment, physical environment, health services, and structural and societal factors. Social determinants of health are shaped by the distribution of money, power, and resources throughout local communities, nations, and the world

15. Grounded in the circumstances by which individuals are born, grow up, live, work, age, and the established systems that are put in place allowing persons to effectively manage an health. • Factors found in one’s living and working conditions, rather than individual factors (behavioral risk factors or genetics) that influence or predisposes the risk for disease or vulnerability to disease or injury. • Question: are there some determinants that are more important than others in understanding pain disparities? • Is the list comprehensive?, What determinants of health are more important than others?, How is each determinant of health interpreted and measured in both research and policy?

18. Intersectionality theory (and pain disparities) Theory of knowledge that strives to elucidate and interpret multiple and intersecting systems of oppression and privilege. Disrupts linear thinking that prioritizes any one category of social identity. Strives to understand what is created and experienced at the intersection of two or more axes Intersectionality is the idea that multiple identities intersect to create a whole that is different from the individual identities. These identities that can intersect include age, gender, race, social class, ethnicity, nationality, religion, mental illness, physical disability, etc. Intersectionality analysis advances a new order of complexity for understanding how certain identities intersect with other dimensions of inequality to create experiences of health

19. This has the potential to provide new knowledge that can more effectively guide actions toward eliminating disparities • across age, race, ethnicity, gender, social class, SES, and other dimensions of social inequality • Recognizing the importance of multiple categories of social identity, intersectionality does not presume – a priori –the importance of one category over another. • Moves beyond the assumption that health outcomes may be caused by a number of contributing causes by asserting that numerous factors are always at play. • Challenges dominate analyses of health determinants by revealing how to better conceptualize the cumulative, interlocking dynamics that affect human experiences, including health (pain). • Identities are seen to occur in interactions, within category diversity becomes important and homogenization of social categories is rejected

20. This approach requires moving beyond singular categories of identity to the complexity of diverse influences that shape and affect lives. However, ‘it is very much in keeping with the trend in public health policy away from a biologically-based causal model, to a more nuanced and complex understanding of how health and illness are influenced by multiple determinants’ • Pain is not a singular occurring pathology (whether primary or secondary). Recognizing there are multiple and fluid pathways/identities that define the experience

21. NIA Health Disparities Research Framework

22. from research to practice: what is your role in reducing pain disparities? • Increase recognition of pain as a public health problem…how? • Pain is not a singular occurring pathology. Recognizing there are multiple and fluid pathways/identities that define the experience • Train providers (and research scholars) in pain care, including culturally and linguistically appropriate services • Who is being studied? Who is being compared to whom and why? • Who is the research for and does it advance the needs of those under study? • Is the research framed within the current cultural, political, economic, society, and or situational context, and if possible, does it reflect self-identified needs of the the affected community? • Establishing educational campaigns for stakeholders to encourage data-driven decision making • Seize opportunities to partner with pain advocacy groups/organizations and professional organizations and agencies to promote awareness of pain treatment disparities through education, media communication, and service on advisory boards and special interest groups • Training and continuing education programs that equip health providers with tools to identify and address explicit and implicit biases in practice. • Targeted education and training in pain treatment disparities should be emphasized in both graduate medical education and continuing medical education, as well as in licensure, accreditation, and certification programs in medicine, nursing, and allied health professions • Consistency in race and ethnicity data collection: what racial and ethnic categories should be employed in research and how race and ethnicity data are collected and defined • Develop an alternative framework for understanding and addressing (pain) disparities • Targeted educational campaigns and public health disparities marketing programs • E.g., “Is my pain well-managed?” • Multidisciplinary approaches: integrating basic, clinical, and health service research methodologies • Decision-making among patients...establishing care plans, being an advocate for their own health

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24. Elizabeth E. (Nana) • 94 years young • Has a 95 year young sister • Lives alone • Hugs doctors after each appointment • Recently diagnosed with compression fracture (and still smiling!) • …she is why we are here today!

25. acknowledgements • Project EMMPWR • Darlingtina Atakere, Nicole Kramer, Paige Whiteside, Skylar Johnson, Lamont McCray-King, Laura Nordhem, Destiny Coleman, Riley Hess, Araba Kuofie, Jacquelyn Minahan • Cancer and pain project • Heather Collins-Farmer, Chloe Jean, Jessica Krok-Schoen, Kiaraliz Castro, Courtney Wells, Rosalyn Roker • Palestine Senior Activity Center • Lori Smith • Gloria Roby • Moffitt Cancer Center • Ludovico Balducci • Toni Brou (University of Kansas) • Kansas U Medical Center Research Institute (Frontiers Program) • NIH Clinical and Translational Science Award grant (UL1 TR000001, formerly UL1RR033179), awarded to the University of Kansas Medical Center

26. THANK YOU!