The NIH Diversity Mandate:
H
How
Cli
Clinic
i C
Culture
l
U
Undermines
d
i
Minority Inclusion in Cancer Trials
Daniel Dohan, PhD
G l JJoseph,
Galen
h PhD
UC San Francisco
Wh
Where
we're
' headed
h d d
• Medical research and
ethnic/racial minorities
(background)
• Three case studies of minority
inclusion
(data & results)
C
culture: How it matters
• Clinic
and why we should care
(discussion)
• Policy implications and next
steps
(conclusion)
Eth i / i l minorities
Ethnic/racial
i iti iin medical
di l research
h
• Representation, risk, and opportunity
Epstein, 2007; Fisher, 2009
• NIH Revitalization Act & “science” of minority recruitment
Joseph and Dohan, 2009 & 2010
• Disparities and the culture of health care organizations
J
Jones,Trivedi
T i di and
d Ayanian,
A
i
2009
• Leadership,
Leadership infrastructure,
infrastructure resources
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
Q lit ti case study
Qualitative
t d approach
h
• Design: Comparative ethnography
• Sites: 10 clinics in 3 healthcare settings
• academic medical center (AMC)
• safety-net
safety net hospital (SNH)
• community private practice (CPP)
• Focus: Clinician relationships with each other & patients
• Participant-observation
Participant observation & in
in-depth
depth interviews
• Deductive & emergent coding and analysis
• 3 sociologist/1
i l i t/1 anthropologist
th
l i t PhD ethnographers
th
h
Different potential to recruit diverse subjects
Race/Ethnicity of Patients at 3 Clinics
(source: internal reports; all names are pseudonyms)
Safety-Net Hospital
(SNH)
Academic Medical
Center (AMC)
Community Private
Practice (CPP)
Minorityy inclusion in p
practice
Clinic
Leadership
Private
Practice
Information
Systems
No business
Not a priority
case
Tailored
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
Clinic
Leadership
Information
Systems
Tailored
Resources
Highly
No business
Private
Not a priority
professional
case
Practice
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
Clinic
Leadership
Information
Systems
Tailored
Resources
Highly
No business
Private
Not a priority
professional
case
Practice
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
Clinic
Leadership
Information
Systems
Tailored
Resources
Highly
No business
Private
Not a priority
professional
case
Practice
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
How clinic culture
matters
tt
& why
h we care
• Despite federal law, little change
in minority recruitment
• Culture ≠ whole way of life
Bourdieu, 1977; Swidler, 1986
• Values, norms
• Rituals,, habits,, practices,
p
,
language, “strategies of
action”
• Disparities: elephant in the room
P. Bourdieu, Outline of a Theory of Practice Cambridge U; Swidler, Am Soc Rev, 1986
I li ti
Implications
and
d nextt steps
t
• Stages of disparities work
• Changing
Ch
i professional
f
i
l cultures
lt
• NCI empowering patients project: Get patients to
address discrimination in provider-patient interactions
• Reaching new audiences: www.cultureofmedicine.org
Kilbourne et. al. Am. J. Public Health. 2006