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Steps toward a Transdisciplinary and Community-Based Approach

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Title: Steps toward a Transdisciplinary and Community-Based Approach


1
Steps toward a Transdisciplinary and
Community-Based Approach
  • To Health Disparity
  • Mark Nichter, University of Arizona, April 2003

2
Five Objectives
  • Propose ways of thinking about culture and
    ethnicity productive to a health disparity
    agenda.
  • Make a case for transdisciplinary research
    involving the health and social sciences
  • contributing to a eco-social epidemiological
    understanding of health problems
  • attentive to nested contexts and syndemic
    patterns of ill health

3
  1. Describe cross disciplinary research as a
    continuum and transdisciplinary research as a
    process

4
Objectives
  • Provide an overview of two broad areas of
    transdisciplinary research essential to a health
    disparity agenda
  • Translational research
  • Formative research process
  • Participatory research
  • Cultural competency training
  • Moving beyond first steps on a cultural
    competence continuum
  • Using anthropologists as facilitators

5
Objectives
  • Revisit transdisciplinary research
  • Identify challenges and stumbling blocks

6
Objective one
  • Propose ways of thinking about culture and
    ethnicity productive to a health disparity agenda.

7
Ethnicity
  • When ethnicity is employed as a category in
    public health and medicine, it is important to be
    clear about ones assumptions (and intentions)
  • How is ethnic designation going to be used in
    data analysis and how will this frame thinking
    about interventions?

8
Ethnicity
  • Is an ethnic label being used to examine the
    possible role of biological differences?
  • Is ethnicity a proxy for a whole bundle of
    social and economic factors associated with the
    position a group of people has been forced to
    assume as a result of a history of discrimination
    or oppression
  • As a marker of social inequity and structural
    violence

9
Ethnicity
  • Is ethnicity being examined to determine whether
    the distinctive characteristics of an ethnic
    groups culture are protecting or exposing this
    group to particular types of risk?

10
How should we think about culture?
  • Culture is commonly thought of as an enduring set
    of social norms and institutions that organize
    the life of members of particular ethnic groups
    giving them a sense of continuity and community.

11
Culture
  • Often described rather vaguely as an
    all-encompassing associational field in which
    ethnicity is experienced.
  • When Culture is thought about in terms of
    consensus and as a template for ideal behavior,
    the positions of different stakeholders (defined
    by gender, generation, class, power relations,
    etc.) are forgotten and heterogeneity is ignored.
  • The tensions within are glossed over.

12
Culture
  • Culture is more than a unique collection of
    beliefs, values, habits, customs
  • Culture is more than a mental map the map is not
    the territory!

13
Culture
  • Culture involves
  • Processes of control
  • Expressions of agency
  • Areas of conflict

14
Processes of control
  • Control is exercised in variety of ways through
    ideas as well as practices, speech as well as
    action, perceptions of normative behavior and
    what constitutes morality as well as what is
    deemed deviant or abhorrent behavior
  • Ideas about the normal and natural, abnormal and
    deviant are motivated social constructions. They
    often involve power relations
  • They are not neutral. They have a history.

15
Agency
  • Understanding culture requires more than being
    attentive to the rules of the game and
    dispositions to act and think in particular ways.
  • How is the game being played in different public
    and private contexts?
  • People are rule makers as well as rule breakers
    rules may be broken in cultural ways.
  • The game is being reinvented and finessed all the
    time there are plenty of grey areas and lots of
    improvisation.

16
Conflict
  • Structural tensions exist within all cultures
  • Gender within gender, across gender
  • Generation varying expectations, dreams
  • Conflicting allegiances and alliances
  • Conflicting ideas about entitlement to scarce
    resources
  • Individualistic aspirations and sociocentric
    norms
  • Jealousies and so on

17
Culture is a project, not a thing
  • A processual rendering of culture is most
    productive. Such an approach directs attention to
    cultural dimensions of social transactions and
    asks what is cultural about particular types of
    behavior in different contexts.
  • See culture as more as an adjective than a noun
    (Appadurai 1986).

18
Relevance to health field
  • Instead of stereotypical characterizations of
    culture and folk illnesses, what we require for
    cultural competency training are more processual
    accounts of illness experiences, health care
    seeking, and follow through which get at what is
    cultural about courses of action.

19
  • Circumstantial ethnographies that explore
  • contingencies, hard choices, and, in situations
    when little choice exists, the coping strategies
    that favor illness being interpreted and
    responded to in particular ways.

20
Ethnicity is not a black box
  • There has been mounting criticism about the way
    in which race/ethnicity has been used in public
    health research as a set of pigeon holes if not
    black boxes.
  • This fosters an analysis of difference that
    focuses on individual and group traits rather
    than the contexts in which people live.

21
Ethnicity Risk marker or risk factor?
  • Despite warnings against reading too much into
    aggregate (e.g., state, national) data on a
    specific health problem and ethnicity, it is all
    too easy to view ethnicity as a risk factor
    rather than a risk marker.

22
Example
  • Are cultural factors responsible for ethnic
    differences in levels of smoking, drinking,
    consuming fast food, or engaging in fast sex?
  • Or is ethnicity merely a marker of multiple
    social and economic factors predisposing such
    behaviors in particular environments
  • by members of an ethnic group living in
    circumstances not of their own making or choosing

23
The environment matters
  • Example
  • Adults who say that they live in unsafe
    neighborhoods are one and a half times more
    likely to be overweight than adults who say they
    live in safe communities
  • (Ross C. Brownson 2003)
  • Interventions need to target spaces not just
    people

24
The environment matters
  • Example
  • When broken down by race, not just wealth, there
    are four times as many supermarkets in
    predominantly white neighborhoods as in the
    African American neighborhoods of Detroit.
  • These people are also less likely to have a car

25
  • Point. On reason urban dwelling African Americans
    living in poverty have poor diets is because
    reasonably priced food sources are not
    accessible.
  • The same is true of Native Americans living in
    rural areas of the SW.
  • This places them at greater risk for chronic
    diseases, such as diabetes and hypertension

26
  • Their dietary behavior is responsive to the
    availability of foods, it is not merely a
    question of cultural preference. On the other
    hand children are socialized into food habits
    which persist over time.
  • Poor food habits become a marker for an
    impoverished environment.
  • Is the answer to just nutrition education?

27
More Productive Ways
  • Of
  • Studying Health Inequality

28
Objective two
  • Make a case for transdisciplinary research
    involving the health and social sciences
  • contributing to a eco-social epidemiological
    understanding of health problems
  • attentive to nested contexts and syndemic
    patterns of ill health

29
To address health disparities we need to
reconsider risk
  • It is important to move from an examination of
    groups at risk where the victim(s) may
    unintentionally be blamed
  • As if traits of the group are responsible for
    the problem
  • To a consideration of risky behaviors those
    behaviors placing members of a group at risk

30
Risk reconsidered
  • To environments of risk the places where risky
    behaviors occur more commonly
  • What factors contribute to the proliferation of
    such environments
  • Who spends time in these environments and why
  • Who exploits these environments who sets up shop
    to make a profit

31
Eco-social epidemiology
  • An eco-social approach to epidemiology examines
  • Who and what is responsible for disease
    distribution in a population
  • Current and changing patterns of social
    inequality in health
  • Population based patterns of health and disease
    are seen as biological expressions of social
    relations experienced in multiple contexts.
  • (Kreiger 2001 Intern Journal of Epidemiology)

32
Eco-social epidemiology
  • Investigates environments of risk and structural
    inequalities in health care provision
  • Attention is directed to the cumulative
    interplay between exposure susceptibility
    resistance
  • Focused upon is how nested contexts influence one
    another and predispose sections of a population
    to particular health problems (and clusters of
    problems).

33
Nested Contexts
  • Home environment
  • Peer group environment
  • Neighborhood (schools, etc)
  • Work environment
  • Economic and political economic environment
  • Consumer environment
  • Media environment
  • Etc.

34
Application of eco-social thinking
  • What are the reasons for higher rates of
    hypertension and diabetes or hospital admissions
    for asthma among particular ethnic groups
  • Look at nexus of factors

35
Example Hypertension in African Americans
  • Identified are linkages between (Kreiger 2001)
  • Economic and social deprivation less access to
    good food at an affordable price high fat, high
    salt diet
  • Exposure to toxic substances older houses and
    crowded urban housing more exposure to lead
    paint and car exhaust
  • Socially inflicted trauma discrimination, fear,
    anger increase of allostatic load

36
  • Targeting marketing of commodities high alcohol
    beverages, menthol cigarettes
  • Inadequate health care poor detection of disease
    and poor clinical management
  • Positive side social capital, resistance to
    racism, community based programs which are
    accepted, new laws

37
Ecological to approaches to studying health
problems encourages us
  • To adopt an action is in the interaction
    perspective

38
To appreciate the action in the interaction
  • Think beyond
  • the mere listing of contextual influences
  • the measurement of contextual influences as if
    they operated independently of each other

39
Think beyond regression
  • Regression logic assumes
  • Independent and generally additive contributions
    of variables.
  • The emphasis is on disentangling variable
    effects.
  • Interdependencies among variables are not the
    focus rather they are something to be
    controlled for.

40
How should we go about thinking about health
disparities
  • Step one

41
Question what we think we know
  • Correlations between ethnicity and various health
    problems are rife.
  • What do they tell us?
  • What dont they tell us?

42
  • Correlations are often misinterpreted as causal
    relationships.
  • As if exposure to race/ethnicity explained
    something profound.
  • Observations masquerade as discoveries.

43
  • Instead of research beginning with the
    observation of ethnic differences, it often
    stops!
  • This is one reason transdisciplinary thinking is
    badly needed to take research to the next level -
    to get at differences which make a difference.
  • Differences which may be addressed by
    interventions upstream as well as downstream.

44
  • Approach prevalence data by ethnicity with
    caution
  • Consider what is explained by a other variables,
    especially class and location
  • Then consider how these variables interact with
    cultural norms, institutions etc.

45
  • Example Tobacco use and ethnicity
  • It is productive to look for ethnic differences
    in smoking after first considering other factors
    known to predispose individuals to smoke
  • education, peer influences, social class,
    economic insecurity, stressors (e.g.,
    discrimination), other drug use, etc.
  • (Nichter Addiction 2003)

46
Ethnicity and Smoking
  • Follow up What trends in smoking are not
    explained by social class, education, etc.
  • Why is it that African Americans tend to have a
    later age of smoking uptake than other ethnic
    groups?
  • Lower overall prevalence rates
  • High rates of heavy smoking once smoking is
    established

47
  • What is cultural about
  • smoking trajectories
  • times of smoking transition
  • patterns of smoking
  • cigarette preference and topography

48
Ethnicity and smoking uptake
  • To what degree do parenting styles influence
    smoking uptake
  • African Americans parenting more authoritarian
  • Native Americans autonomy valued even at young
    age
  • To what extent do differences in peer influence
    effect smoking uptake
  • African Americans peer influence less than
    white
  • How do different ideas about style and
    aesthetics influence smoking uptake
  • Smoking is not a Black styling thing

49
When changes in rates of smoking prevalence are
reported
  • We need to ask
  • In what sub-groups is this occurring
    (intercultural variability)
  • What may be the reasons
  • Are ethnic groups being targeted for social
    engineering read marketing
  • What else is going on

50
Trends in cigarette smoking among 12th graders,
by racial/ethnic group United States, 1977-1998
50
40
White
30
Hispanic
Percentage
20
10
Black
0
1983
1979
1981
1977
1985
1987
1989
1991
1993
1995
1997
Year
Smoking on gt1 of the 30 days before the
survey. 2-year moving averages are used to
stabilize estimates.
Source University of Michigan, Monitoring the
Future Project.2000.
51
How should we go about thinking about health
disparities
  • Step two

52
Step two
  • Rather than focusing on one health problem or why
    there is a sudden rise in a particular type of
    unhealthy behavior (like smoking)
  • Examine what else is going on and if there is a
    link between things which are co-occurring look
    broadly
  • Focus on the package, a specific behavior change
    or health problem may be a symptom of a much
    bigger shift

53
How should we go about thinking about health
disparities
  • Step three

54
Look for
  • Syndemic patterns not just individual health
    problems

55
Syndemics
  • Syndemics occur when multiple health related
    problems cluster by person, place, or time.
  • They refer to the set of synergistic or
    intertwined and mutual enhancing health and
    social problems facing a population.
  • http//www.cdc.gov/syndemics/overview-definition.h
    tm.

56
Syndemics
  • Preventing syndemics requires both control of the
    component afflictions and recognition of the
    relationships that tie those afflictions together
    and synergistically amplify their negative
    consequences.

57
A Syndemic Network
  • To prevent a syndemic, one must prevent or
    control not only each affliction but also the
    forces that tie those afflictions together

58
Syndemic example
  • Substance abuse, violence, and AIDS
  • Inextricable and mutually reinforcing connections
    between three conditions disproportionately
    afflict those living in poverty in U.S. cities
    (Singer 1994 1996).

59
The SAVA Syndemic
  • Adapted from Singer M, 1996

60
Syndemics
  • A syndemic orientation is primarily distinguished
    from other perspectives by its explicit emphasis
    on examining connections between health-related
    problems.
  • With this concern, it offers a broader framework
    for understanding how multiple health problems
    interact in particular communities.

61
Syndemics
  • A syndemic orientation elevates public health
    inquiry beyond its many individual categories to
    examine directly the conditions that create and
    sustain overall community health.
  • The notion of a syndemic shows that at the
    community level there is more to prevention
    science than the study of isolated health
    problems.

62
Health-related problems cluster for many reasons
  • Caused by the same/similar biological agent
    (vector etc.)
  • Common mode of transmission (e.g. water borne)
  • Common risk factors (e.g. smoking, fast food
    obesity)
  • Result from same environment of risk

63
  • Have reciprocal or interdependent effects (e.g.,
    alcoholism and depression can reinforce each
    other)

64
  • The syndemic model raises difficult questions and
    challenges public health to address the root
    causes of health disparities. By introducing a
    multi-level, dynamic epidemiological perspective,
    it points toward the need to develop and evaluate
    systems- and community-level interventions that
    target linked processes." (From MacQueen KM, in
    Breslow et.al, 2002)

65
Objective 3
  • Why should we invest in transdisciplinary
    problem solving?
  • Describe transdisciplinary research as a process.
  • How does it differ from multidisciplinary or
    interdisciplinary research?

66
Taxonomy of cross-disciplinary research
  • Rosenfield PL, Soc. Sci. Med. 35(11)1343-57

67
Multidisciplinary research
  • Multidisciplinary Researchers work in parallel
    or sequentially from disciplinary-specific base
    to address common problem.

68
Interdisciplinary Research
  • Interdisciplinary Researchers work jointly but
    still from disciplinary-specific basis to address
    common problem.

69
Transdisciplinary Research
  • Transdisciplinary Researchers work jointly using
    shared conceptual framework drawing together
    disciplinary-specific theories, concepts, and
    approaches to address common problem.

70
  • There is a direct link between the level of
    disciplinary integration and the contribution to
    health policies and programmes (Rosenfield
    19921353)

71
Contribution
  • Multidisciplinary Specific short-term problem
    solving.
  • Interdisciplinary New specific programs plus
    problem solving.
  • Transdisciplinary Broadly-based trans-sectoral
    programs and actions with longer life new
    concepts, methods, and policies.

72
  • Transdisciplinary thinking requires that a health
    problem be reconceptualised within the full
    complexity of the systems in which it is embedded
    (Albrecht Higginbotham 2001).

73
Transdisciplinary Science
TD science is a strategy and a process for
solving complex problems, where determinants are
multiple, interacting, reciprocal, multi-level

74
The transdisciplinary study of complex health
problems demands
  • A consideration of interlocking levels of
    influence
  • From cells to society to globalization

75
Interlocking levels of influence Relevant
disciplines
  • Biobehavioral clinical and behavioral sciences,
    public health
  • Sociocultural social sciences which study nested
    social interactional contexts
  • Global political economics, policy sciences
    which examine the flow of people, ideas, products
    and influence etc. and the politics of
    responsibility beyond the boundaries of nation
    states

76
Transdisciplinary research requires
  • Listening across the gulfs that separate
    disciplines and scientists representing
    them
  • Common language - conceptual translation
    among scientists from various disciplines
  • Engaging in joint projects
  • Collaboration on research that bridges
    disciplines Kahn and Prager,
    1992

77
What it takes...
  • Commitment time, energy, intellectual work
  • Focus central theme, activity meaningful and
    robust problem to solve
  • Patience takes time to learn how to engage other
    disciplines, to appreciate other lines of thought
  • Vigilance overcome forces of disciplines,
    departments, grants, promotions, products
  • Fortitude taking risks, tenacity, bravery
  • Adapted from Dr. D. Prager

78
Objective 4
  • Provide an overview of two broad areas of
    transdisciplinary research essential to a health
    disparity agenda
  • Part one Translational research
  • Formative research process
  • Participatory research

79
Translational Research
  • Clarify what translational research covers as the
    term is now being used in relation to health.
  • Describe the role of anthropologists
  • Provide examples of a few important issues which
    urgently require translational research by
    transdisciplinary teams involving
    anthropologists.

80
Translational Research
  • General Use of the Term
  • Translating science to practice through
  • Dissemination
  • Diffusion
  • Application of Scientific Findings

81
Translational Research
  • Focuses on the interface between
  • 1) Scientists (broadly defined)
  • 2) Health care providers
  • 3) Policy makers all areas
  • 4) Communities having diverse backgrounds
    (e.g., ethnicity, class, physical and political
    environment)

82
Translational Research
  • Focuses on the interface between
  • 5) Funding agencies/resources, etc.
  • 6) NGOs representing local as well as
    transnational interests, etc.
  • 7) Health care industry
  • 8) Business interests responsible for workers
    and consumer behavior.

83
Primary Goal of Translational Research (in Health)
  • To improve public health outcomes through
  • More conscious communication between these eight
    sectors.
  • The development of more tailored interventions
    beyond one size fits all approaches.
  • Involving more active community participation
    from development to evaluation stages of an
    intervention.

84
What is Called For
  • Interventions which are
  • Relevant to specific populations
  • Understood by the population and supported
    locally
  • Feasible given real life contingencies
  • Effective as evaluated against a baseline and
    secular trends
  • Sustainable

85
Expanded Scope of Translational Research
  • Goal of health equity at a time of shrinking
    resources and rationing
  • To reduce, if not alleviate, disparities in
  • Health status
  • Access to essential health services
  • Treatment outcomes and quality of care

86
The Role of Anthropologists in Translational
Research
  • What do they bring to the table

87
Anthropologists Have an Established Track Record
  • Working on the interfaces between
  • Communities, health providers and policy makers
  • Bringing local knowledge and the concerns of the
    community to the table
  • Describing stakeholder positions
  • Placing community responses to health problems
    and health programs within a broader context.

88
Anthropologists have a long history
  • Serving as cultural brokers between patients and
    communities
  • Health care providers
  • Health policy makers
  • National/ International Health Agencies

89
Anthropologists
  • Also have a long history
  • Being asked to identify cultural barriers to
    health programs.
  • Emphasis on beliefs which determine unhealthy
    behavior
  • Prescription Knowledge becomes the key to
    behavior change

90
Cultural Barriers Only One of Many Things
Anthropologists Study
  • Anthropologist often hired to examine cultural
    barriers to programs, especially when they are
    doing poorly.
  • Anthropologists look at this as a very limited
    use of their skills
  • Also a limited assessment of a problems given an
    eco-social perspective

91
Cultural Barrier Bias
  • Focusing on cultural barriers
  • Can deflect attention from other causes of
    failure (e.g. racism, sexism and ageism
    structural violence inadequate resources poor
    management lack of trust)
  • Can inadvertently promote victim blaming and
    ethnic stereotyping, etc.

92
Pathogenic vs Salutogenic Focus
  • Far more attention is directed toward looking at
    risk factors than protective factors when
    ethnicity is addressed.
  • Focusing on cultural barriers to programs
    frames culture as a risk factor at large impeding
    progress.

93
Whats missing
  • A consideration of positive aspects of cultural
    institutions, norms, local funds of knowledge,
    social capital etc.
  • Consideration of resilience a core theme in
    minority health

94
To Engage in Translational Research
  • A More Balanced View of Culture is Required

95
Translational Research Agenda
  • Ideally involves an anthropological perspective
    at each of the eight stages of formative
    research.
  • There are only a few examples of anthropologists
    being supported to participate at all stages of
    formative research. This needs to change.

96
Formative Research
  • Eight Stages
  • (Nichter, http//medanthro.net/academic/tools)

97
Formative Research
  • To inform What people are doing, saying, and
    thinking now about a health-related issue, and
    how history as well as globalization informs the
    present.
  • 2. To identify Important problems which need to
    be solved -- identified by experts as well as
    community members.
  • 3. To generate A list of options for
    interventions in the community, clinics, etc.

98
Formative Research
  • 4. To foster critical assessment and problem
    solving What are the pluses and minuses of
    possible interventions for various stakeholders?
  • 5. To investigate How best to implement
    promising interventions Who, when, where, how
    much, what collaborations?
  • 6. To monitor responses To interventions
    affording mid-course correction, etc.

99
Formative Research
  • 7. To evaluate success Is the intervention
    really making a difference and if not, why not?
    Is the success or failure due to the program or
    other factors?
  • 8. To examine How is an intervention and its
    results being presented to the public and
    scientific community? What is the response to
    this production of knowledge?

100
Participatory research combined with formative
research
  • Is very powerful

101
Participatory research
  • Within communities of practice
  • Raise the consciousness of practitioners and
    policy makers by involving them in short research
    exercises
  • Enable them to understand issues in new ways and
    appreciate the need for different types of
    information

102
Examples
  • COPE Practitioners follow patients as they
    access and negotiate the health care system
    spend a few days with patients and tiers of staff
    as they work the system
  • Focused ethnographies Specific health problems
    are investigated from the position of patients,
    health providers, administrators different
    stake holder positions

103
Participatory research
  • Community based problem solving requires
  • Mobilizing community action sets are mobilized
    around issues and tasks which matter to the
    community
  • Build capacity for critical thinking leading to
    action one must invest in the process

104
Formative research empowers people
  • Participatory research gives people a place to
    begin to think through a problem
  • Engage community members through science, let
    them test their own hunches, not just yours
  • Involve them not just collecting data, but the
    research process demystify the process
  • Science if embraced by the community can be a
    tool of empowerment
  • Encourage the community to take ownership of the
    data and participate in its dissemination

105
Translational Research
  • Examples of pressing Issues
  • Demanding
  • Attention

106
Issue One
107
How does the public respond to health information
  • Given all the time invested in conducting
    rigorous epidemiological research, shouldnt as
    much effort be put into studying how it is
    received and used?
  • When epidemiological data is released to the
    public, reported in the press, etc. how is it
    interpreted and responded to?

108
Epidemiological Data
  • Does data on prevalence or risk place a community
    at further risk?
  • Make a behavior appear more normative
  • Make a problem seem more inevitable, etc.
  • When do surveillance and screening activities
    have the unintended consequence of making a
    problem appear far more prevalent, creating a
    sense of dread?

109
N.E. Thai Cervical Cancer Study
  • Prevalence rate 25/100,000
  • Perceived prevalence rate after PAP smear
    screening program 3/10
  • All recurrent and chronic RTI problems are
    associated with cervical cancer by local women
  • Result earlier recognition of cancer at the cost
    of tremendous suffering on the part of women.

110
Accountability
  • Translational research has an ethical agenda.
  • Information released to the community needs to be
    monitored how is it interpreted?
  • If interpretations of health messages are
    iatrogenic, they need to be corrected.

111
Issue Two
112
What form of information is most effective
  • Beyond content of health and risk messages, what
    type of message best catches the attention of
    members of minority groups (by gender and
    generation, education)
  • Statistics and numbers
  • Testimonials by whom
  • Images
  • Analogies
  • Etc.

113
Issue Three
114
Disinformation
  • The deliberate, often subtle, propagation of
    misinformation by parties having vested interests
    in maintaining unhealthy behaviors.
  • The evidence is not in, experts disagree
    about whether smoking is really all that
    unhealthy

115
Disinformation
  • Misinformation is often tied to harm reduction
    alternatives which appeal to wishful thinking.
  • Promotion of cigarettes which are lighter,
    milder, better filtered, more organic, giving the
    impression they are safer to smoke.
  • Food labels are misleading how are they read
    and what kind of consumer education is needed

116
Direct to consumer advertising of medicines
  • Minority group members , especially ones with no
    health insurance or access to care facilities,
    engage in self care
  • We know little about self care practices - what
    they use and how they use it
  • What we do know is that they purchase products
    which are often promoted by companies in spurious
    ways

117
Issue four
118
The need for consumer education
  • Reading labels, critical thinking
  • Communication skills how to report problems and
    seek advice, writing and oral
  • Basic math how to calculate costs, understand
    measures etc. in real world context
  • Health consumer education practical and
    targeted to issues facing minority groups
  • How to access health care, work the system,
    pharmaceutical practice, self care

119
Health education for minority health
  • We can learn lessons from primary health care
    programs in developing countries
  • ORS, ARI (recognize pneumonia), nutrition which
    matches local food habits, budgets, seasonal
    availability of foods, breastfeeding
  • New initiatives to teach about taking care of the
    elderly health across the life course

120
Bottom Up Nutrition Education
  • During the four years of high school, youth may
    be exposed to only five class periods or less on
    nutrition.
  • In the absence of ethnography on teens everyday
    eating behavior, the content of nutrition classes
    is general with a focus on the food pyramid.
  • (Mimi Nichter, 2000)

121
Translational Research
  • Is needed to address the many questions teens
    have about weight and foods that they typically
    consume.
  • What healthy choices can I make when I
    go to a fast food restaurant?
  • What do nutritional labels mean?
  • Whats the difference between light and lo-fat?

122
Address Youth Concerns
  • Rather than provide general nutrition messages,
    there is a need to
  • Build upon the questions which youth already
    have
  • Address their concerns related to body image and
    development
  • Reinforce positive behaviors which youth already
    practice
  • (Mimi Nichter, 2000)

123
Issue Five
124
Information flows
  • We need to know far more about flows of
    information about health care ?
  • How do people learn to access, navigate and work
    the health care system?
  • What do minority populations see as factors which
    impede their use of health care facilities
    language, forms, way they are treated, hidden
    costs, fear

125
Who are the care takers
  • Who should we be providing health care
    information about the chronically ill?
  • For example those with diabetes or hypertension
  • Who are the care takers of the chronically ill?
    Who influences their behavior?
  • Consider migrant workers who travel with and
    without their families

126
Issue six
127
Trust
  • Trust is crucial to the translational process
  • To what degree is trust in health information
    related to
  • Trust in the source of the information?
  • Trust in the spokesperson conveying the
    information and their connection to community?

128
Trust
  • How do issues of trust and perceptions of health
    provider motivation impact
  • Health care seeking and compliance
  • Participation in preventive and promotive health
    programs, clinical trials etc.

129
Trust
  • 42 of Blacks and 23 of Whites said they did not
    trust their doctors to fully explain medical
    research participation to them
  • 37 of Blacks and 20 of Whites believed their
    doctor might ask them to participate in medical
    research even if it could harm their health
  • Fackelmann Archives of Internal Medicine Nov
    25, 2002, N 527 Blacks, 382 whites

130
Trust
  • 45 of Blacks and 35 of Whites believed their
    doctors might expose them to unnecessary risks
    when prescribing treatment
  • 63 of Blacks and 38 of Whites believed their
    doctors often prescribed medicines as a means of
    experimenting on people without their knowledge

131
  • Twenty-five percent of African Americans and 8
    of Whites believed that their doctor had given
    them an experimental treatment without their
    consent

132
Trust
  • Medicine has attained such a privileged place in
    American society that many of those in the health
    have been lulled into the false belief that they
    are entitled to be trusted.
  • Trust is earned, not owed
  • Once lost, trust is exceedingly difficult to
    regain
  • (Jordan Cohen, Pres. of AAMC 2002)

133
How do we go about
  • Regaining trust

134
Objective 4
  • Provide an overview of two broad areas of
    transdisciplinary research essential to a health
    disparity agenda
  • Part two Cultural competency training

135
Cultural competency training
  • Cultural competency training is a need medicine
    can no longer ignore given
  • Demographic trends in the US
  • Federal legislation
  • Potential law suits
  • Competition for patients
  • Growth of a cultural competency industry to fill
    this need

136
Cultural competency training a continuum
  • Employ translators language assistance, as
    cultural brokers
  • Training becomes a big issue medical vocabulary
    or conceptual translation?
  • Provide a few lectures sensitivity training,
    curriculum varies greatly

137
  • Two day workshops generalities about ethnic
    groups abound
  • Some better than others
  • In some cases people get accredited as having
    expertise after 2 days!
  • Grand rounds often topical

138
  • Cultural competence is seen as a process which is
    developmental
  • All medical interactions are seen as cross
    cultural
  • Issues related to health disparity and the
    cultural dimension of care are integrated into
    teaching curriculum not compartmentalized
  • Patient centered care is carried out
  • Modeling occurs learning by example, cases are
    discussed
  • Core competencies and skills are not just learned
    but practiced and modeled

139
Practical training
  • Inpatient rounds
  • outpatient clinics
  • off site electives in community as practicum
  • Home visits arranged for students, students
    assigned families during part of training

140
  • Therapy facilitation an anthropologist or other
    health social scientist assumes a therapy
    facilitator role on the wards
  • Cultural broker between patients/ their families
    the health care system different staff members
    on a clinical unit

141
Invest in Anthropologists they will pay off in
multiple ways
  • Anthropologists can make major contributions at
    every stage of this continuum from training
    translators to giving workshops which explain
    cultural concerns and practices yet confront and
    caution against ethnic stereotypes

142
To be an effective facilitator training is needed
  • To be a good transdisciplinary facilitator, an
    anthropologist or clinician/anthropologist needs
    the experience of working in a clinical setting
    as part of a transdisciplinary team.
  • There is a need to grow such anthropologists /
    clinician/anthropologists
  • A program is necessary

143
There a model for doing this
  • Classroom training Course work which issue
    driven, draws on case studies, class has
    transdisciplinary student body
  • Behavioral rounds anthropologists join teams on
    the wards
  • Apprenticeship model

144
Behavioral rounds How does it work
  • One patient a week chosen for an illness
    interview 30-45 minutes, then a 15-20 minute
    follow up.
  • What is covered Range of issues from illness
    experience of patient, to medication issues, to
    dealing with death, patients of different ethic
    groups
  • So what analysis how does a deeper
    understanding of the patient inform care
    management. Reflexivity on par of clinicians.

145
Behavior rounds takes an hour a week it is well
worth it
  • Residents and interns see their mentors and
    peers taking culture seriously so they learn to
    do so
  • Hidden curriculum
  • See one-do one-teach one process set into motion.
    Students learn to take the lead after watching.
  • Case write ups write ups acknowledged and used
    in future training of students

146
Discrimination is addressed
  • Most health care providers do not intentionally
    discriminate and do not see their actions in
    this light. Reflexivity needs to be built into
    the system beyond patient audits.
  • Patients also discriminate Practitioners need
    to learn how to addressed this when it occurs and
    interferes with patient care such as undermining
    trust.

147
Cultural competency training
  • Not just for doctors, nurses, social workers
  • Hospital techs
  • Allied health staff
  • CAM practitioners

148
Other areas where cultural competency
  • Is required

149
Research Partnerships need to be Established
  • Cultural competence is needed to foster
    cooperation within ethnic communities to increase
    participation in research and clinical trials.

150
The challenge
  • Historical mistrust racism, bias, exploitation
  • Need to establish good will and trust
  • Reciprocity, research findings need to be shared
    in such a way that they are seen as useful to the
    community
  • Groups need to be seen in positive light not just
    as ill or at risk
  • Research outcomes should not be seen as
    establishing racial superiority

151
Transdisciplinary Research
  • Challenges

152
Enough Time
  • With continuing support to the same team over a
    sufficiently long period of time and covering
    several types of problems, it is more likely that
    disciplinary barriers can be transcended and
    increased understanding and confidence about the
    value of other disciplines can be achieved
  • (Rosenfield (19921345)

153
Cooperation
  • Each team /network member must value the
    perspective of other disciplines not just in
    spirit, but in practice
  • This requires some basic familiarity with the
    different perspectives each discipline brings to
    the table
  • Team members need to teach each others through
    example, and be willing to demystify concepts and
    terminology

154
Methods
  • Research. Issues related to methods need to be
    worked out early especially issues related to
    the very different objectives, methods, and
    sampling frames used in qualitative and
    quantitative research

155
  • Transdisciplinary science requires thinking out
    of the box
  • Brainstorming out of the box is far easier than
    working in new ways.
  • In practice, one often falls back to their
    default familiar models and procedures

156
Challenges
  • Researchers need to be attentive to the issue of
    knowledge production and the fact that data is
    often the artefact of methods and instruments
    used.
  • Triangulation of data driven by different methods
    and theories needs to be encouraged with the
    understanding that one source of data is not
    privileged above others.

157
  • Example
  • Standardized scales and instruments which have
    been psychometrically validated and used in
    previous studies for particular reference
    populations must be open to scrutiny
  • Are they the best measures for minority groups
  • Are other variables equally or more important for
    these groups given their lifeworld

158
Leadership
  • Transdisciplinary research works best when
    assisted by a facilitator who attends to the
    process of research as much as the content.
  • This person insures that
  • Innovation is encouraged
  • Single disciplines do not dominate problem
    solving
  • Hybrid thinking is encouraged

159
Acknowledgement
  • Cross-disciplinary work is often not given enough
    credit how does one value a hybrid product and
    acknowledge participation in a multidisciplinary
    process of problem solving
  • How does participation count for tenure?
  • Publication can be more difficult as professional
    journals often stick to familiar formats of data
    presentation

160
  • A crucial difference between basic
    mono-disciplinary research on the one hand and
    inter-disciplinary research on the other hand, is
    that the former finds its legitimisation within
    its own field. In this sense disciplines are
    bodies of knowledge or objects to which it is
    possible, even respectable, to add something.
    Inter-disciplinary research has no mechanism of
    intrinsic legitimisation and rather depends upon
    how well it illuminates the overarching problem
    being researched (AHRQ 199717-18).
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