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Daniel Dohan, PhD The NIH Diversity Mandate: Galen Joseph, PhD Culture, Disparities, and Research UC San Francisco Motivation: ‘higher’ stages t off disparities di iti work k Reducing • Intervene • Evaluate • Translate and disseminate • Change policy Understand and reduce disparities by analyzing culture Culture and Minorityy Inclusion in Cancer Clinical Trials 1. Community/patient trust in medical research 2. Clinician/organizational commitment to inclusion Understanding • Identifying determinants of health disparities at the following levels • Patient/Individual • Provider P id • Clinical encounter • Health care system Detecting • Define health disparities • Define vulnerable populations • Measure disparities in vulnerable populations • Consider selection effects, confounding factors Good M-JD, et al. “The Culture of Medicine” in Unequal treatment, NAP, 2003; Kilbourne et al,. AJPH. 2006 Cli i culture Clinic lt and d commitment it t tto iinclusion l i • NIH Revitalization Act of 1993 Risk, Representation, Access/Opportunity Epstein, 2007; Fisher, 2009 • How health care organizations reduce disparities Jones,Trivedi and Ayanian, 2009 • Case studies: Leadership, Leadership information, information resources Joseph and Dohan, 2009 & 2010 S. Epstein. Inclusion, U. Chicago; J. Fischer. Medical Research for Hire, Rutgers U.; Joseph and Dohan, Cancer, 2009, Cont Clin Trial, 2010; Jones et al. SocSciMed 2009 C Comparative ti ethnography th h case study t d approach h • 10 clinics in 3 healthcare settings in NoCal • academic medical center (AMC) • safety-net f t t hospital h it l (SNH) • community private practice (CPP) • Provider interactions with each other and patients • Participant-observation P ti i t b ti and d in-depth i d th iinterviews t i • Deductive and emergent coding and analysis • PhD ethnographers: 3 sociologists, 1 anthropologist Different potential to recruit diverse subjects Safety-Net S f t N t Hospital H it l (SNH) Academic A d i M Medical di l Center (AMC) Race/Ethnicity of Patients at 3 Clinics (source: internal reports; all names are pseudonyms) Community C it Private Pi t Practice (CPP) Minorityy inclusion in p practice Leadership Private Practice Information No business Not a priority case Resources Highly professional staff Academic Low on list of Response to Lack of Center priorities mandate enforcement Safety Net Yes (MDs) No (staff) Resource constraints For care not research Minorityy inclusion in p practice Leadership Information No business Private Not a priority case Practice Resources Bi-cultural staff Academic Low on list Response to Lack of Center of priorities mandate enforcement Safety Net Yes (MDs) No (staff) Resource For care not constraints research Minorityy inclusion in p practice Leadership Information Resources No business Private Not a priority case Practice Bi-cultural staff Academic Low on Response to Center priority list mandate Few Safety Net Yes (MDs) No (staff) Resource For care not constraints research Minorityy inclusion in p practice Leadership Information Resources No business Private Not a priority case Practice Bi-cultural staff Academic Low on Response to Center priority list mandate Few Safety Net Yes (MDs) No (staff) Antiquated systems For care not research “Good” Good providers not doing the “right” right thing • No site had an effective minority recruiting program • Federal law ineffective at triggering inclusion or outreach Getting folks on board to reduce disparities 1. Oncologists are intrigued by genetic difference - Leverage scientific curiosity to enhance mandate? 2. Communities recognize trials as potential opportunity - Want access to care and are wary of scientific curiosity 3. Researcher strategies for enhancing the conversation - Popular culture: www.cultureofmedicine.org - Clinic cculture: lt re Empower Empo er patients