MAY 2007

Community-Based
Translational Research
in Arizona:

Enhancing
Partnerships with
Hispanic/Latino
Communities

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COMMUNITY-BASED TRANSLATIONAL RESEARCH IN ARIZONA

CONTENTS

Preface......................................................................................................................................... 1
Summary of Recommendations For Enhancing Community-Based Translational
Research In Arizona.................................................................................................................... 2
Best Practices............................................................................................................ 2
Key Lessons for Arizona for the Enhancement of Community-Based Partnerships
with Members of Hispanic/Latino Communities...................................................... 2
Introduction .............................................................................................................................. 3
Development of Handbook...................................................................................... 4
Section One: The Arizona Situation............................................................................. 7
Research Community Situation................................................................................ 8
Translational Research with the Hispanic/Latino Communities Of Arizona........... 8
Section Two: Overview of Community-Based Participatory Research
(CBPR)....................................................................................................................................... 11
What Are the Guiding Principles of CBPR? ........................................................... 11
Defining CBPR for Arizona..................................................................................... 12
Section Three: Best Practices: Examples and Lessons Learned ................... 13
Best Practice Lessons ............................................................................................. 14
What it Takes to Establish and Maintain Community-Based
Participatory Research Efforts................................................................................ 15
Section Four: Framework for Implementing CBPR in Arizona .................... 19
A. Coordination...................................................................................................... 19
B. Institutional Review Board ................................................................................. 21
C. Patient Consent ................................................................................................. 22
D. Data Ownership and Dissemination ................................................................. 23
E. Biological Samples—Ownership and Disposal ................................................... 24
F. Intellectual Property ........................................................................................... 25
G. Funds Flow ......................................................................................................... 27
Section Five: Recommendations for an Arizona Statewide
Approach to Community-Based Participatory Research ................................. 28
Rights of Community Members in CBPR............................................................... 28
Recommendations For Arizona Research Organizations ...................................... 28
In Summary ............................................................................................................. 31

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COMMUNITY-BASED TRANSLATIONAL RESEARCH IN ARIZONA

PREFACE

Underserved populations in the U.S. including members of minority populations and the elderly
have not benefited from the investments made in advances in the nation’s healthcare system brought
about by basic and clinical research. As a result, it has become a national initiative to engage
underserved populations more effectively in translational research and clinical trials as one
component of improving the health and well being of underserved populations.
In the fall of 2004, the Arizona Biomedical Research Commission and the Flinn Foundation
convened a working group of representatives of leading healthcare and research organizations in
Arizona to identify key issues that hinder or discourage members of underserved populations from
engaging in translational research programs.
This working group identified Community-Based Participatory Research (CBPR) as the foundation
for developing collaborative, team based engagements among their organizations and communities
in Arizona. Native Americans and Hispanic/Latino communities were chosen as the initial focus for
this initiative. This document is the culmination of one of the goals of this initiative—the creation of
a handbook to familiarize and guide investigators in the principles and applications of CommunityBased Participatory Research. This document is focused on the issues related to the Hispanic/Latino
communities.
The handbook is the product of the efforts of many individuals, both local and national. One on one
interviews, conferences, focus groups engaging community leaders and examination of publicly
available information were used to inform the development of the handbook. Implementation of
CBPR projects requires both consistency and flexibility. Key guiding principles and processes can be
standardized to guide researchers and community members in the development of community
based research agenda.
The information presented in this handbook is intended to provide guidance for productive
dialogue(s) among parties and should not be construed as the “final word.”
The handbook is, and will continue to be, a living document—flexible and dynamic in its
organization and content in response to the evolution of partnerships and activities.
The existing document is a working draft developed as the initial best effort. We recognize that input
from tribal and community leaders is essential prior to distribution in order to ensure that the
document reflects the views and needs of the community. For this reason, we request your assistance as
reviewers by providing your comments and suggestions for improving the current version.

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COMMUNITY-BASED TRANSLATIONAL RESEARCH IN ARIZONA

SUMMARY OF RECOMMENDATIONS FOR
ENHANCING COMMUNITY-BASED TRANSLATIONAL
RESEARCH IN ARIZONA

BEST PRACTICES
•

Establish a long-term commitment by all partners.

•

Recognize and acknowledge the community as a valuable and contributing partner, and create
the means for the community to participate in the research activities, and work to build capacity
within the community for the mutual benefit of all partners.

•

Facilitate collaborative, equitable involvement of all partners in all phases of the research and in
decision-making regarding the research activities.

•

Integrate knowledge and intervention for the mutual benefit of all partners.

KEY LESSONS FOR ARIZONA FOR THE ENHANCEMENT OF
COMMUNITY-BASED PARTNERSHIPS WITH MEMBERS OF THE
HISPANIC/LATINO COMMUNITIES
•

Develop structures and processes that facilitate the trust and the sharing of influence and
control among partners.

•

Build the capacity of all partners for continued involvement in translational research

•

Plan ahead for sustainability.

•

Be inclusive on all decisions regarding the communication of project results.

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pay for care (directly or through insurance
coverage), the location, management and
delivery of health care services, clinical
uncertainty, and health care practitioner
beliefs, among others.”6

INTRODUCTION

There is a health crisis facing Hispanic/Latino
communities. The disparities in health status
are staggering.

But addressing health care access alone will
not fully address the problem of health
disparities for underserved populations. As the
HHS report further explains, there are
“different underlying rates of illness due to
genetic predisposition, local environmental
conditions, or lifestyle choices.” In fact, there is
a growing body of research on the complex
interplay of environmental and genetic factors
contributing to the health disparities for
Hispanics/Latinos. For example, there is
evidence of a genetic basis for the susceptibility
to Type 2 diabetes for both Mexican Americans
8
and Pima Indians. The existing evidence raises
the possibility of finding populations-specific
molecular targets (enzymes, receptors,
substrates for new drug development).9

Hispanics/Latinos are almost twice as likely to
have diabetes as non-Hispanic whites1, may
exhibit symptoms of Alzheimer’s years earlier
than other populations,2 are hospitalized more
frequently for heart attacks than non-Hispanic
3
whites and require different effective doses of
some medications.4
Causes of such high levels of health disparities
are complex—reflecting differences in lifestyle
as well as a lack of access to quality and timely
healthcare services for Hispanics/Latinos. In
March 2002, The Institute of Medicine (IOM)
published a report on healthcare disparities
that made suggestions for reducing and
eliminating these disparities.5,6 Based on this
report, the U.S. Department of Health and
Human Services (HHS) issued its report on
National Healthcare Disparities in 2003 that,
while minimizing some of the conclusions of
the IOM report7, does discuss the complexity
involved in solving the problem of health care
disparity. “There are differences in the careseeking behavior of patients, which vary due to
differing cultural beliefs, linguistic barriers,
degree of trust of health care providers, or
variations in the predisposition to seek timely
care. In addition, the availability of care is
dependent upon such factors as the ability to

Similarly, differences are found in the causes of
cardiovascular disease in Hispanics/Latinos vs.
10,11
non-Hispanic whites. As a result, many
Hispanic/Latino patients, in all likelihood, do
not receive an appropriate cholesterol-lowering
“statin” drug adequate for their needs.12
Even more revealing on the challenges to
treating diseases found among
Hispanics/Latinos is the different responses
these population groups may have to standard
13
drug treatments than whites. Hispanic/Latino

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•

groups have different genetic profiles for drug
14
metabolizing enzymes that can be affected by
environmental factors and diet.15

But translational research targeted to
Hispanics/Latinos can only be effective if
performed within a research framework that
considers the real world differences in culture,
broader community needs, socioeconomic
status, and structure of health care delivery for
these communities. Defining this framework
and putting it into practice is at the heart of
developing a “community-based participatory
research model” for Arizona.

This growing body of evidence linking
environmental and genetic factors to
differences in health outcomes suggests the
significant value that translational research
targeted to these underserved population
groups can have in improving the detection,
prevention and treatment of specific diseases
that disproportionately affect Hispanics/Latinos.
Application of lab based scientific
breakthroughs to improved healthcare of
individuals requires additional investigations
that link the discovery to possible effects in
humans. These iterative, progressive
investigations are usually referred to as
translational research. Translational research
links the discoveries of the research bench to
the development of better diagnostic methods,
therapeutic products and preventive processes
that improve healthcare outcomes. More
specifically, translational research programs
can help in understanding the contributions of
the various factors to health disparities by
addressing the following issues:
•

Identification of genetic vs. environmental
effects on disease etiology;

•

Use of genetic and metabolic profiles to
better the design and delivery of drugs and
other treatment modalities for specific
population groups; and

Development of preventive medicine
strategies and interventions to help
minimize healthcare disparities.

DEVELOPMENT OF HANDBOOK

This handbook is a first step in helping to
develop guidelines to inform the advancement
of translational research within the framework
of a community-based participatory research
model in Arizona for Hispanic/Latino
Communities.
The handbook is organized in five sections:

4

•

Section One considers the Arizona
situation in collaborations with
Hispanic/Latino populations and the state
of preparedness of the research
community.

•

Section Two provides an overview into the
concept of Community-Based Participatory
Research

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•

Section Three examines several of the
best practices models and key lessons
relevant to the Arizona situation.

•

Section Four advances a framework for
implementing Community-Based
Participatory Research (CBPR) with model
research codes and templates developed by
other organizations (included in the
appendices) to provide guides for further
discussions and development of Arizona
specific approaches.

•

Section Five sets out recommendations
for statewide activities to support the
development of CBPR in Arizona.

The development of this handbook is an
outgrowth of the Arizona Translational
Research Pathway project sponsored by the
Arizona Biomedical Research Commission and
Flinn Foundation. A Work Group of
translational research leaders engaged with
underserved populations was organized to
determine how Arizona could go about building
a stronger foundation for collaborating with
underserved population groups.

Be culturally sensitive and responsive to the
needs of special populations that can be
addressed by research as opposed to those
projects that provide value only to the
investigator.

•

Create mechanisms that will enable
researchers to develop and work in true
partnership with special populations. Key
mechanisms will include cultural sensitivity
training, academic tenure policies, capacity
building and revenue sharing policies.

•

Increase both federal (and state) funding
that is more responsive to specific goals of
Community-Based Participatory Research.

The Work Group agreed that these goals were
best accomplished within the framework of
advancing “community-based participatory
research” (CBPR) in Arizona on a statewide
basis. This, in turn, requires that community
representatives be actively involved in shaping
the requirements and implementation of a
tailored approach to community-based
participatory research for Arizona. Although
many institutions have made efforts to engage
in CBPR, the first major initiative to engage
community leaders in a coordinated, ongoing
statewide program that would build a
sustainable process for CBPR in Arizona is The
Southwest American Indian Collaborative
Network. This NIH funded project links the
Intertribal Council of Arizona, The Arizona
Cancer Center and the Phoenix Indian Medical
Center with researchers from Arizona
Universities and healthcare organizations to

The Work Group began with a focus on
determining the best ways to:
•

•

Link the knowledge gained from research
on environmental and genetic
contributions to the development of more
effective treatments for diseases based on
gender, ethnicity and/or age.

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address cancer health disparities among
American Indians in the Southwest. This
handbook is part of the process to assist the
establishment of additional CBPR efforts.
Valuable guidance in the shaping and
development of this handbook has been
provided by community leaders in the
Hispanic/Latino communities of Tucson and
Maricopa County.

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for all parties involved emphasizes the need for
a new compact to make community-based
participatory research a reality in Arizona.

SECTION ONE:
THE ARIZONA SITUATION

To help set the stage for tailoring an approach
to community-based participatory research for
Arizona, it is critical to be guided by an
understanding of the situation on-the-ground
facing the research community and the
Hispanic/Latino community. On the positive
side, there is experience in researchers
working with Hispanic/Latino communities to
advance together disease-focused research that
will develop more effective healthcare for
members of the community. But the unique
challenges of conducting translational research

The following discussion summarizes the
challenges involved in CBPR translational
research and the views of each of the major
participants.

Figure 1: Representative Efforts of Arizona Institutions to Engage in Translational Research with
Hispanic/Latino Communities
Many institutions in Arizona have ongoing programs Hispanic/Latino communities. Active efforts include those
summarized below:
Institution

Selected Initiatives/Projects Underway*

Approach to Improving Engagement

Sun Health Research
Institute

Member of Alzheimer’s Consortium,

TGen

Member of Alzheimer’s Consortium, work with
Avondale to promote community health in
Hispanics/Latinos, emerging partnership with
University of Mexico/NIH
Works with Central Phoenix Health
Organization (Hispanics/Latinos)

Designated liaison for community
interactions
Development of educational materials to
assist community in providing healthcare
for elderly members
Leadership, financial commitment, on-theground community commitment,
educational programs for community

Mayo Clinic Cancer
Center
Barrow’s
Neurological Institute
Southern Arizona VA
Healthcare System
Northern Arizona
University
University of Arizona

Works with Alzheimer’s Latino Medical
Organization, member of Alzheimer’s
Consortium,
Home Buddies for home based primary care
Hispanics(/Latinos), Alzheimer’s and Diabetes
programs (/Latinos)
Numerous educational and training programs,
economic development programs,
environmentally linked research,
Center for Health Disparities, Diabetes
Prevention and Control, Arizona Hispanic
Center of Excellence, Promotoras program for
community health workers

7

Leadership, financial commitment,
dedicated liaison to link community with
appropriate investigator
Leadership, financial commitment, bilingual
staff, works with caregivers, gives talks in
community
Strong community involvement and
volunteerism; home-based care
intervention
Institutional commitment; coordinating
center for ease of access
Coalition building; established community
health workers organization; centralized
assistance to faculty; shared services across
projects; bilingual staff.

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to a lack of understanding of the complex
issues involved.

RESEARCH COMMUNITY
SITUATION

Many Arizona biomedical research institutions
are actively involved in translational research
programs with Hispanic/Latino communities.
Figure 1 (page 7) summarizes a few of the
many activities ongoing in Arizona today. Many
of these initiatives are promoting exciting
innovations to improve the ways of engaging
researchers and the underserved communities.

Currently, Arizona institutions need to
overcome:
•

Disjointed efforts both among and within
institutions. There is no system or
infrastructure to help researchers and
institutions in Arizona work together.

•

A level of distrust in many Hispanic/Latino
communities due in part to a lack of
cultural sensitivity and true partnership on
the part of investigators.

•

Poor communication and dissemination of
knowledge gained as a result of the
research to the community.

Problems and Barriers to Address

Researchers and their institutions continue to
face significant complications to working with
Hispanic/Latino communities.
From the perspective of the individual
researcher, community-based participatory
research is a time-intensive effort fraught with
delays. In many cases, each researcher needs
to establish their own relationship with the
community. This often means learning as they
go what it means to be culturally sensitive and
responsive to the needs of the community.
Typically it can be more than 18 to 24 months
to project launch.

The missing element in many efforts is a
predictable, community-led effort to engage
with the research community as partners in
developing the research agenda.

TRANSLATIONAL RESEARCH
WITH THE HISPANIC/LATINO
COMMUNITIES OF ARIZONA

The term “Hispanic/Latino” refers to a highly
diverse population.

From the perspective of the research
institution, Arizona’s efforts in collaborating
with underserved Hispanic/Latino populations
are currently highly fragmented. No
mechanism(s) exists to support the scale up of
efforts or to learn from best practices. Newer
entities trying to establish programs find that
they are often less than successful due in part

Distinctions are found in national origin,
immigration status, acculturation,
socioeconomic status, educational level,
English and Spanish language proficiency,
dialect, skin color and other physical attributes,

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political beliefs, geographic location (urban
and rural) and cultural traditions. Not only can
this diversity result in different dietary practices
and preferences, research has demonstrated an
altered genetic predisposition to some
16
diseases.

As one considers translational research in the
context of the Hispanic/Latino community, the
challenge of having a diverse community raises
the key need to develop mechanisms to identify
health care needs and address ways to engage
the community as partners in their healthcare.
While there are efforts underway to put in place
these types of mechanisms, they are few and
just emerging. Examples of such efforts
include:

This diversity is mirrored in Arizona. The
Hispanic/Latino community is not a single
entity—communities that border Mexico have
different issues than urban communities such
as Tucson and Phoenix, which in turn vary
among themselves including socioeconomic
standing, educational attainment and cultural
beliefs.
While many members of Arizona’s
Hispanic/Latino population share strong ties
with Mexico, other members of the community
have ties to Latin America. In addition, there
are significant differences between those
members of the community who have been
here for generations vs. recent immigrants,
between rural, border communities and urban
communities.
What Hispanic/Latinos share is a strong sense
of community, strong work ethic, preservation
of their cultural heritage, patriotism, political
affiliation, religious faith, and shared
experiences of prejudice and discrimination.17

•

The Healthy Avondale 2010 project is using
a community-based “saturation” approach
to improve health in the Hispanic/Latino
community including an emphasis on
cardiovascular disease.

•

Use of Promotoras, or community health
workers. These healthcare providers have
no formal health training but are leaders
among their peers in working with border
communities. Promotoras have advanced
community coalitions that truly listen and
respond to community needs. They engage
community leaders to direct programming
and set priorities, including clinical trials
to meet the needs of the community.

Initiatives to engage the Hispanic/Latino
community must also consider language and
cultural differences. Language is not simply the
use of words, but how words are interpreted.
Non-verbal communication (use of the hands
for example) is very important in the
Hispanic/Latino community. In addition,
Hispanic/Latinos are non-confrontational and

Issues in Advancing Translational
Research with Hispanic/Latino
Communities

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•

are not likely to question or disagree with the
18
doctor or investigator. Special care is needed
to ensure that the concepts of communitybased participatory research and use of
healthcare resources are adequately translated,
including an understandable explanation of
complicated procedures and medication
regimens. There also must be respect for and
sensitivity to the specific culture of each
Hispanic/Latino community. They are not all
the same.

•

Develop training programs and
acknowledge participation. Provide
encouragement and incentives for ongoing
participation; and make a focused effort to
include community representatives as reviewing
and voting members of Internal Review Board
committees. IRB policies will need to
respect cultural norms.

Many Hispanic/Latino communities have poor
access to healthcare. Seeking to advance
research without improving other aspects of
healthcare provision will be resisted.
Initial discussions with Hispanic/Latino leaders
in Tucson suggest that community outreach
must be central to any efforts to advance
translational research among
Hispanic/Latino communities. This
outreach should be comprehensive in nature,
including:
•

Involve front line providers, such as
physicians, nurses, and clinics;

•

Connect with community groups, and
organizing and/or contributing to events
such as health fairs;

•

Provide explanations, in Spanish, of the
clinical trials process and contributions to
improved healthcare;

•

Develop specific support groups for
caregivers, patients;

Address special needs such as
transportation that are barriers to
participation in clinical trials and other
aspects of healthcare participation;

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SECTION TWO:

•

A true partnership involving the
community in all phases of the project,
including setting the research agenda, with
an active, ongoing dialogue as the project
is implemented. Community input into
project design, implementation, data
analysis and communication of results is
essential to successful research projects.

•

Sufficient funding for completion of the
project and with focus appropriate to the
needs of the community.

•

Continuation of successful care
outcomes with continued access to
healthcare for participants in research
projects.

OVERVIEW OF COMMUNITYBASED PARTICIPATORY
RESEARCH (CBPR)

The ABRC/Flinn Foundation Special Populations
Work Group on Translational Research and
Special Populations recognizes Communitybased Participatory Research (CBPR) as the
foundation for enhancing partnerships with
Hispanic/Latino communities. This approach is
used by several institutions in the U.S. to
support programs with underserved, minority
groups.
WHAT ARE THE GUIDING
PRINCIPLES OF CBPR?

Ultimately, the litmus test of CBPR is ensuring
that the rights of community participants are
respected and effectively embedded in the
process. These rights include:

From discussions with and publications by
national leaders in the field of CBPR, four key
principles emerge as providing the basis of
19, 20
successful CBPR. ,
•

Long term commitment to developing
and maintaining trusting relationships of
value to the communities.

•

Ongoing communication and support
for capacity building within the community
is essential.

•

Cultural sensitivity ensuring that the
beliefs, customs, laws and other aspects
unique to special populations and
communities are respected and
incorporated into any project on an
ongoing basis.

11

•

Certain rights that are determined by law
(for example—privacy rights through
HIPPA; human subject protection; and state
laws on healthcare guardianship,
safeguards on personal/medical
information).

•

Projects/programs that provide benefit to
the community.

•

Institutional Review Boards that include
community members and evaluate human
subjects research in light of cultural
norms.

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•

Respect as full partners in the research
including input into design, evaluation and
information prior to dissemination to
external sources.

•

Data collection and evaluation processes
that accurately reflect the unique
characteristics of the community.

•

Agreement as to and acceptance of said
agreements related to ownership of data
and disposal of data and other
contributions such as tissue and DNA.
Some communities will not allow
publication under certain circumstances
and such research must be performed as a
service to this community.

•

Allocation of financial resources that
recognize community contributions
including indirect cost funds, Intellectual
Property royalties, workforce/training
funds.

•

Hiring policies that support community
participation in programs.

•

Commitment to and sustainability of
programs in order to provide benefit to the
community.

context and barriers facing a community in
order to set out an appropriate definition for
that particular situation.
To define CBPR for Arizona, the concept was
discussed with Arizona research and
community leaders using published definitions
as a starting point.
For Arizona stakeholders, an effective working
definition of CBPR is:
A collaborative partnership approach to
research that involves community
members, organizational
representatives, academic institutions,
state and local public health agencies,
health care institutions, funding
agencies and researchers in all aspects
of the research process. The partners
contribute their expertise and share
responsibilities and ownership to
enhance understanding of a given
problem, “foster community and
institutional capacity for participatory
research at national and local levels”
and “facilitate approaches for
effectively translating communitybased interventions in public health
and prevention into widespread
practice at the community level.” 21

DEFINING CBPR FOR ARIZONA?

While there is a national movement towards
Community-Based Participatory Research, there
is no single definition that fits all situations.
National leaders in the field of CBPR have found
that it is important to understand the historical

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oriented programs, preventive care programs,
and more comprehensive research to health
care programs.
Given the focus on translational research, the
involvement of university partners is a central
attribute, along with the many different funding
partners involved.
Table 1 (below) sets out an overview of several
of the leading programs found across the nation.

SECTION THREE:
BEST PRACTICES: EXAMPLES
AND LESSONS LEARNED

There are a number of examples of leading
CBPR programs from across the nation. The
focus of these efforts range from disease

Table 1: Examples of Leading CBPR Programs Across the U.S.
Partnership Characteristics

Project Orientation

Best Practices

Mature Programs

Extensive integration of research and community

The Healthy
African American
Families Project,
Los Angeles, CA

Integrates funding agency,
community, university
participants into a strong
partnership with joint decisions
and commitment on part of
funding agency to be closely
involved
University and community
united in addressing asthma in
community

Holistic approach to
health care needs of
community—prevention,
intervention, extended
care and social support

Hired from community
Project was housed in community

Project focused on
positive interventions

Community members involved in
leadership positions and hired as
staff; community hired researcher

Johns Hopkins
University,
Baltimore, MD

Operates community health
stations on reservations

Began by addressing
healthcare problems/needs
of the community (ex.,
newborn diarrhea)

The Midwest Latino
Health Research,
Training and Policy
Center; University
of Illinois at
Chicago, Jane
Addams College of
Social Work

Established in 1993 by Aida L.
Giachello, Ph.D., to improve the
health state and the quality of
health care delivery, including
increased participation in clinical
trials, to Hispanics/Latinos in
Chicago and the Midwest

Has developed
infrastructure to focus on
areas that have received
limited attention in
Hispanic/Latino
communities including
chronic illness, injury, and
maternal and child health

Summer training program for
youths from community.
Hires and trains staff from
community as outreach workers
Implementation of capacity
building, in the community; focus
on targeted action; system and
policy changes; coalition building
with community, training of
practitioners, researchers; development of cultural sensitivity guide

Emerging Programs

Early development invested significant time and effort in establishing relationships

University of New
Mexico

Community involved in all stages
of planning including initiated
contact with university in order
to solve community-based
problem of dental care
University wide initiatives rather
than a focus on any specific
population

Community Action
Against Asthma,
Detroit, MI

University of
Washington

Expanded programs with
specific support groups
(ex., breast cancer)

13

University made commitment by
convening partnership conference
with representatives of
underserved populations and the
university to extend interactions
University commitment to CBPR
signaled with published guidelines
for CBPR that have been endorsed
by Dean and University president.
University has centralized advisory
committee to interact with
community and coordinate
communications.
Have some funds flow through
community organizations to signal
partnership relationship

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community in the process of meeting these
needs.

BEST PRACTICE LESSONS

Among the best practice lessons that emerge
from these successful examples of CBPR are:
•

Long term commitments must include
funding resources sufficient to support
initiatives and projects. It is highly
important, therefore, to maintain close
involvement of funding
institutions/agencies. Funding agencies
need ongoing participation in order to
understand the progress and alterations
that may be requested. Inclusion of the
funding agency as a member of the team
permits timely and necessary revision of
protocols, timelines, and funding needs.
This is shown in the Healthy African
American Families Project that integrated
the funding agency with other participants
to ensure alignment of goals and
expectations and in the work of Johns
Hopkins University which provides
institutional support in additional to
external funding agencies.

Establish a long-term commitment by
all partners. This is seen in the ongoing
programs by Johns Hopkins University
which began in the 1970’s and continue to
address specific healthcare problems that
result in healthcare disparities among
American Indian Tribes. Active
demonstration of an interest in the needs
and concerns of the community over a
period of time is merely the first step in
establishing a partnership. Developing a
community-institutional partnership is
inevitably a non-linear process involving
many “starts” and “restarts.” Interaction
with and participation in the life of the
community must occur on an ongoing
basis.
Community-based partnerships can not be
rushed. Time plays a significant role in
developing community partnerships and
success may be defined differently for each
stage of the process. Providing benefits to
the community on multiple levels on an
ongoing basis should be the prime
definition of success. Early stages will be
successful if the community begins to trust
researchers and has the opportunity to
communicate their needs and concerns.
Later stage successes will include research
projects that address the healthcare needs
of the community and involve the

•

14

Recognize and acknowledge the
community as a valuable contributor,
create the means for the community
to participate in the activities, and
work to build capacity within the
community for the mutual benefit of
all partners. This is demonstrated in the
Healthy African American Families project
which identified key healthcare issues and
possible causes, designed preventive
measures and provided ongoing support to
enhance the overall health of the

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is shown in the work by Michigan University
researchers and community leaders in Detroit,
Michigan to enhance mechanisms for asthma
intervention and ongoing support for patients.
A second example is that of The Midwest Latino
Health Research, Training and Policy Center of
the University of Illinois – Chicago. This
organization has focused on health issues for
Hispanic/Latino communities that have received
limited attention by healthcare organizations.
Dissemination of key findings and knowledge to
all partners provides a positive impact on the
health of the community as seen in the
prevention of newborn diarrhea in Native
Americans resulting from a partnership
between the tribal community and Johns
Hopkins University.

community. Social and cultural
contributions are essential to the successful
identification of health issues and
implementation of preventive behaviors as
well as therapeutic interventions. Without
community participation and feedback,
long term benefits will diminish over time.
Hiring and training community members is
found in all best practice institutions and
embeds knowledge gained from the project
into the fabric of the community to ensure
ongoing application and interpretation of
research findings.
•

Facilitate collaborative, equitable
involvement of all partners in all
phases of the research and in
decision-making regarding the
activities. Recognizing the strengths and
resources within the community enhances
the caliber of the research project by
incorporating community knowledge and
expertise. This is shown in the emerging
programs at the University of New Mexico
that are based upon initial outreach from
the community. Partnerships have been
developed that jointly identify key issues
and actions. Equitable involvement is also
demonstrated by the Michigan project in
which community members are an
important part of the information
dissemination process-often appearing as
co-speakers at conferences and as
co-authors on publications.

WHAT IT TAKES TO ESTABLISH
AND MAINTAIN COMMUNITYBASED PARTICIPATORY
RESEARCH EFFORTS

Existing CBPR programs can also provide
guidance on what it takes to establish and
maintain such programs. Based on a two year
benchmarking project by The Centers for
22
Disease Control (CDC), it was found that
CBPR institutional partnerships differ by:

•

Integrate knowledge and intervention
for the mutual benefit of all partners. This

15

•

Age and history.

•

Type of research focus and mission.

•

Levels and mechanisms of community
participation.

•

Staffing structures.

•

Geography.

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•

Funding sources.

•

Types of partners involved.

become barriers to a successful communityinstitutional partnership.

There is no one right way to address who
should be invited to form or join a research
partnership but it is very important that
members have a prior history of positive
working relationships. Newer members must
be willing to abide by the rules and procedures
of the ongoing partnership.

Community involvement is critical, including
participation in: the process of building a
shared conceptual model of health and disease;
the development of data collection instruments
that are relevant, valid and culturally
appropriate; data collection processes that
enhance response rates and data quality; data
analysis; the dissemination of findings and
follow-up actions for incorporation of findings
into community action.

The CDC has recently produced a list of
recommendations developed from surveying
national leaders in the field of CBPR. These
recommendations can serve as an outline for
discussions by investigators and other
participants to identify issues that could
become barriers and potential methods of
resolving them.

These processes require researchers and
community partners who are willing to
approach problems from each other’s
perspective.
No one set of principles and procedures are
applicable for all partnerships. While
partnerships can build upon previous
examples, all partnerships must engage in the
process of developing, adopting and putting
into practice their own principles and
procedures that are tailored to the local culture
and community context. Such principles and
procedures should be reviewed periodically,
changed as needed and “codified” for
dissemination to new potential collaborators to
ensure that any new projects affiliated with the
partnership are in compliance.

There are four key lessons of particular
relevance for Arizona:
1. Develop Structures and Processes that
Facilitate the Development of Trust and
the Sharing of Influence and Control
among Partners
Jointly create the mission, vision and
priorities for the partnership and jointly
develop partnership principles and operating
procedures. As with any joint effort, there will
be the inevitable conflict and tensions.
Procedures and mechanisms based on mutual
respect should be included in the initial plan to
identify and resolve conflicts before they

2. Build the Capacity of All Partners

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Develop and implement strategies for
capacity building of all partners involved.
Strategies should include striving to achieve
and invest an equitable distribution of costs,
benefits and resources among the partners.
This can include the establishment and
maintenance of on-site facilities; hiring of
community members as staff; purchasing
supplies; partnering with local businesses; and
providing training, technical assistance, and
continuing education to partners.

required by this work. The partnership should
routinely send partnership reports, papers,
news clippings and other products to funding
agency project officers and key organizational
leaders.
4. Be Inclusive on All Decisions
Regarding the Communication of
Project Results.
Establish policies at the inception of the
project concerning the communication of
project results. The community must have
significant input as to the use and
communication of information resulting from
the research project. A consensus among
investigators and community must be
established on many aspects of the
communication process prior to any
dissemination of results. Key decision points
include: the interpretation and implication of
project results, determination of which results
are to be communicated to third parties, the
identity of the third parties, and the extent of
community participation in the communication
of results and the choice of preferred medium
of communication.

In addition, “capacity building and structural
changes must occur at the institutional and
funding levels so that funding agencies, ethics
review boards, and university promotion and
tenure committees are informed of and
responsive to the necessity of the time needed
for trust building, community entry, and the
building of sustainable research relationships
within an OCAP (ownership, control, access,
and possession) era.”23
3. Plan Ahead for Sustainability
Issues of sustainability need to be addressed
at all phases of a partnership. Sustainability will
require dedication and commitment on the part
of both partners in terms of dedicated
personnel, time and resources. A key
contributing element of sustainability is the
engagement of funding agencies to ensure
ongoing financial resources. This can be
approached by working with funding agencies
to increase their understanding of and support
for the benefits gained and the resources

Successful community-institutional partnerships
recognize the contributions of all members
often including community members as authors
and presenters of the information.
Long term benefits of the partnership can result
from the dissemination and translation of
research findings that lead to policy change(s).

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Education of policy makers requires developing
ongoing relationships with policy makers and
their staff, developing a policy agenda for the
partnership, and creating and disseminating
policy briefs that reflect the key issues, findings
and recommendations for action.

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We also set out key principles for the research
community to embrace as they seek to work
with special underserved communities.

SECTION FOUR:
FRAMEWORK FOR
IMPLEMENTING CBPR IN
ARIZONA

A. COORDINATION

Why it is critical to implementation:

The objective of this handbook is to advance a
framework in which Arizona can go forward in
establishing statewide approaches to
community-based participatory research with
Hispanic/Latinos and other communities. As
emphasized previously, the research agenda
must be established with community
involvement. Participatory research to fulfill
this agenda requires attention to the procedural
specifics that underpin translational research.

Coordination of research activities among
institutions and with the communities involved
is a critical differentiator in the success or
failure of CBPR programs. Coordination in the
CBPR is a cross-cutting need at all stages.
Key Issues Involved:
Members of the community are not interested
in inter-institutional political battles.

The key elements of the framework include
how to address:
•

Coordination

•

Institutional Review Boards

•

Patient Consent

•

Data Ownership and Dissemination

•

Biological Samples

•

Intellectual Property

•

Funds Flow

A lack of coordination among institutions
hinders 1) the development of more effective
trusting community-based partnerships due to
inconsistencies in the application of the
principles of CBPR by various institutions and
2) the development of strategic long range
planning efforts by research organizations and
key state and community organizations.
Ongoing community outreach programs, on the
other hand, do lead to a positive positioning of
the institution within the community—a prerequisite for successful CBPR projects.

Below is a presentation of each of these specific
elements based on discussions with Arizonabased organizations, a review of literature, and
an assessment of best practice models.

Best Practice Guidelines:
ƒ Establish advisory committees both at the

institutional and statewide level to

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formulate long term goals and plans for
attaining them.
ƒ Hire a dedicated community liaison to

facilitate interactions between institutions
and the community.
ƒ Define (on a preliminary basis at

minimum) roles, responsibilities, funds
flow and communication plans among
institutions prior to initiating dialogue with
the community.
ƒ Coordinate, communicate and educate all

parties of the partnership via community
outreach programs including attendance at
healthcare fairs, presentations at schools,
and use of community-based media.

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B. INSTITUTIONAL
REVIEW BOARD

biological samples are likely to be more
complex than many investigators are used to.

Why it is critical to implementation:

Best Practice Guidelines:

Any research involving human subjects must
ensure the safety of the individual. The federal
government has adopted laws and procedures
regulating federally-funded and federallysponsored research to ensure that human
subjects are protected. The trust necessary for
successful CBPR projects is dependent upon an
Institutional Review Board process that
acknowledges the involvement of both the
community and the individual in the research
project.

•

Develop specific training programs for
community members of IRB committees.

•

Invest the time up-front to confer with
community representatives in the
preparation of an IRB application prior to
submission.

•

Include community as reviewing and voting
members of IRB committees.

Include bi-lingual members of the research
team to assist community IRB members in the
proper evaluation of the application.

Key Issues Involved:
IRB policies need to respect culture, language
and other restrictions of the community.
Hispanic/Latino communities have strong
beliefs in community ties and benefits. IRB
applications will need to discuss the benefit(s)
of the research to the communities as well as to
individual subjects. Data collection (biological
and surveys) must respect the sensitivities of
the community. As a result, guidelines related
to storage, secondary use and disposal of

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C. PATIENT CONSENT

Best Practice Guidelines:

Why it is critical to implementation:
Inadequate attention to obtaining truly
informed patient consent is a major cause of
distrust. In the case of research with tribal
members, individual consent is only one
step—tribal consent may also be needed.
Attendant issues that are not discussed (time
commitment, financial costs and
compensation) may result in volunteers
withdrawing from the study at a later date.
Key Issues Involved:
Language barriers can cause significant
confusion –many concepts or disease
conditions will not have a corresponding
English/Hispanic/Latino term rendering the
process of informed consent a difficult process.
In addition, condescending behavior/attitudes
on the part of the investigator can lead to
reluctance on the part of the participant to ask
questions resulting in a lack of consent or an
uninformed consent.

22

•

It is essential that this be a bi-lingual
process that recognizes the difficulty of
appropriate translation.

•

Patient Consent materials must be
developed with language appropriate to the
target audience.

•

Inclusion of family/community members in
the process is important.

•

Allow sufficient time for examination of the
form and questions in order to increase the
level of comprehension.

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D. DATA OWNERSHIP AND
DISSEMINATION

Best Practice Guidelines:
ƒ Every case is different but it is essential to

Why it is important to implementation:

agree up front on issues related to data
ownership, confidentiality and
dissemination.

The lack of inclusion of the community in data
collection processes, analysis and
communication is a major source of
dissatisfaction with research projects and a
violation of one of the key principles of CBPR.

ƒ Investigators need to take the time to

obtain and include community feedback
and revisions to ensure data interpretation
includes cultural issues and subtleties.

Key issues involved:

ƒ Investigators should also insure that the

Project design without involvement of the
community often results in inappropriate
instruments and incorrect data. Data evaluated
out of cultural context has resulted in invalid
and damaging conclusions that have not been
communicated to the community and vetted
prior to publication. In addition, project data
has often been used for secondary, unapproved
projects without permission of the community.

community understands the results of the
research and its implications for their
benefit. Provision of links to university,
organization libraries will help knowledge
transfer independent of specific
individuals.

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E. BIOLOGICAL SAMPLES—
OWNERSHIP AND DISPOSAL

Best Practice Guidelines:
ƒ Biological samples include tissue samples,

Why it is important to implementation:

DNA, and other materials.

Collection, use, and disposal of biological
samples as dictated by the cultural beliefs of
special populations is an area that is rarely
addressed properly by investigators resulting in
serious dissatisfaction (and worse) by research
participants.

ƒ The investigator needs to determine and

negotiate ownership of these samples and
the limitations and utilization in
repositories, and secondary use and
development of cell lines.
ƒ The investigator also needs to understand

Key issues involved:

cultural beliefs in the disposal of such
samples.

To members of many cultures, biological
samples are not mere research reagents.
Storage and disposal of biological samples
must respect the cultural beliefs of the
community. In addition, secondary use of
biological samples is viewed as a separate
project and must be approved by the
community in order to ensure cultural
sensitivity.

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F. INTELLECTUAL PROPERTY

There is no short cut to negotiations related to
intellectual property—an issue that is likely to
become more and more complicated with
increasing collaborative research projects. IP
generated by research projects is usually
owned or controlled by the funding agency.
Research investigators and institutions may
negotiate allocation of their shares (and their
shares only) of the IP. The portion of
Community-based ownership of IP is retained
by the community.

Why it is important to implementation:
The creation of intellectual property (IP) from
research activities is often considered a
significant success of the project. While not all
discoveries have commercial value, there is a
significant level of effort required to identify,
protect, manage and license intellectual
property generated through research activities.
In the context of translational research
collaborations, the basic issues relating to
intellectual property (disclosure, patenting,
marketing/commercializing) are compounded
by questions concerning the rights to share in
IP generated among the collaborating parties.
These rights to IP are closely linked with rights
to data ownership and publication rights. The
community has an ownership share in IP
generated as a result of the CBPR research
project.

While a coordinated effort among Arizona
organizations to establish basic policies would
be useful it is more reasonable to realize that
negotiations will be needed on a case by case
basis.
Best practice Guidelines:
Key issues for negotiation include:
•

Inventor and institutional designation
(a legal determination),

•

Ownership and control of research data,

•

The decision process for:

Key issues involved:
Communities are interested in benefiting from
research discoveries made through study of
their populations. That interest in now
extending to the commercialization of research
discoveries. Community interests in controlling
the release of information and the right to
publish may at times conflict with the need to
protect intellectual property. Policies dictated
by funding source and the partner organization
may result in barriers to some communitybased research projects.

Utilization of intellectual property:
assigning rights to third, not-for-profit
entity, direct licensing to industry, and use
as the basis for establishment of company.
Involvement in licensing negotiations, for
example: distribution of royalties and/or
equity.

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Institutions may need to revise existing
intellectual property policies in order to
support CBPR projects.

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G. FUNDS FLOW

Indirect Cost Determination and Distribution:
any negotiation about the allocation of funds
among partners may require alteration/revision
of university policies.

Why it is important to implementation:
True CBPR partnerships are more likely to be
successful with “open book” sharing of
financial resources leading to some level of
capacity building for the community. The
ultimate goal of the research efforts must be
kept in sight at all times to ensure that financial
resources are utilized to the benefit of all
participants in the project.

Intellectual Property, Royalties and Other
Revenues: allocation of revenues from
intellectual property needs to be negotiated at
the beginning of the project design; utilization
of Intellectual Property may provide the
opportunity to enhance business development
by community members.

Key issues involved:

Procurement/Staffing: increased use of local
business and employees may be a means of
offsetting university-directed Indirect Costs.

Projects will not be successful if the community
believes that the research project has been
developed only to acquire funding for and
advance the career of the investigator.
Resentment from the community has resulted
from projects where “the riches” were not
shared. Control of funds by the research
organization contributes to a perception of
control and superiority by failing to
communicate the use of research funds.
Best practice guidelines:
Investment of some funds to the community is
an important component of CBPR as a sign of
true partnership and a road to capacity
building. Administration of some awards
through a community/tribal organization is one
method of “sharing the wealth.”

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SECTION FIVE:

•

Periodic updates during and after
completion of the project (if desired) on
successes, failures and implications;

•

Community involvement including the
hiring of local members to be part of
process when possible;

•

Inclusion of community participants in
presentations and meetings with funding
agencies when possible; and

•

Continued access to healthcare once the
research period is over.

RECOMMENDATIONS FOR
AN ARIZONA STATEWIDE
APPROACH TO COMMUNITYBASED PARTICIPATORY
RESEARCH

Arizona can best advance a statewide approach
to community-based participatory research by:
•

•

Recognizing the rights of community
members
Addressing, statewide, the issues of
coordination, funding, intellectual
property, IRBs and patient consent, data
ownership and distribution and biological
samples.

It is important for the investigator to remember
that one of the returns for their investment in
establishing true CBPR partnerships is the
increased quality of their research as a result of
community input into data acquisition and
interpretation.

RIGHTS OF COMMUNITY
MEMBERS IN CBPR

Research investigators and participants in CBPR
need to ensure that the community/participant
is entitled to:
•

Upfront negotiations and understanding by
all partners on key issues related to the
specific project;

•

A valid project conducted by qualified
investigators;

•

Respectful treatment of samples and
information;

RECOMMENDATIONS FOR
ARIZONA RESEARCH
ORGANIZATIONS

In order to establish trust with Hispanic/Latino
communities, Arizona research institutions
would benefit from coordinated, consistent,
standardized policies and procedures for a
more reliable implementation of CBPR. With
consistent base line procedures and policies,
time and effort could be invested in more value
added negotiations related to project specific
issues. The following recommendations would
contribute to the goal of statewide
implementation of CBPR initiatives.

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The added complexity of IRB applications for
projects involving Hispanic/Latino community
members demonstrates the need to have a pool
of committee members trained in both the
technology and the cultural aspects of projects.

Coordination of statewide efforts
Establish a Statewide Advisory Committee to
facilitate research/community partnerships
Each institution should consider designating a
point person/office to facilitate team building
and community interactions. When multiple
departments/programs are involved with their
own representatives—ongoing coordination
and communication is essential to support
community interactions.

Development of a pool of representatives from
Hispanic/Latino communities that would advise
and serve on a statewide basis would be a
valuable coordinating and communication
resource. Overlapping terms for these
representatives would provide consistency, aid
knowledge transfer and accelerate the
application process.

Funding
Establish a pool of funding dedicated to
CBPR projects for special populations

Intellectual Property

Research priorities are often set by funding
agencies rather than community needs.
Additionally, little funding is available for
early stage projects in Community-Based
Participatory Research yet it is the early stages
that provide the basis for success or failure. A
dedicated, ongoing statewide pool of funds that
would require application of CBPR principles
would provide the incentive and support and
time to align research projects with community
needs.

Historically, research subjects have not
experienced immediate benefits from
successful research projects. Therapies
developed commercially from research
projects may be inaccessible to members of
special populations due to cost; the financial
return on resulting intellectual property in the
form of royalties does not find its way
downstream. Consequently, members of
special populations are revising their
approach to ownership of intellectual
property to more actively participate and
benefit from commercialization.

Institutional Review Board (IRB)

Training for Research Community
Working with Special Populations

Develop a pool of Hispanic/Latino
representatives that are available for
consultations prior to submission of
the IRB application.

Require that all researchers working with
members of special populations utilizing

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state funding support or conducting research
at public universities take a training course.

interest does not automatically translate into
value to the community. The balance between
intellectual freedom and social responsibility
with links between the research and healthcare
policy is an important component of CBPR.

Training of researchers in CBPR concepts is
critical to achieve the required cultural mind
set on the part of the research community.
Training is an important element for building
capacity and ensuring quality control. It may be
useful to have such training provided by a third
party, which can serve as a more neutral and
honest broker of needs from both the
researcher’s and community’s point of view.
Identification of key qualifications for
participation in CBPR projects would help
identify those investigators best qualified to
participate and lead sensitive research
programs. In addition, a dedicated residency
program and/or qualified mentors could
provide relevant training to physicians and
other primary care providers to better engage
in research with special population groups.

2. Gather the right team
Traditional research projects, not involving
special populations, typically require only that
the investigator research team be competitive
for funding from federal and state agencies or
foundations. This is not the case in working
with special populations, where the community
needs to be integrated into the research activity.
As a result, investigators are not used to
building teams with members from widely
diverse areas of expertise. To participate
successfully in CBPR, investigators will need to
be more inclusive in their approach.
In order to understand the cultural, legal,
social and regulatory issues, it will be necessary
to perform a significant amount of due
diligence prior to approaching the community.
In addition, the complete institutional team is
needed early in the process to a) facilitate this
due diligence and b) assist in developing and
negotiating the project plan. Team members
could include research administrators,
anthropologists, other social scientists, legal
experts, and primary caregivers. Community
representatives should also be included in early
stages of project design and negotiations to
ensure a successful project.

Key elements of the training program are as
follows:
1. Acquire a more holistic mind set
The investigator needs to recognize that
communities are dealing with complex
issues—many of which will not be solved by
the investigator’s research agenda. Within the
broader social/healthcare context, the research
project may not provide value to the community
within the time frame expected (or at all). The
investigator’s funding/career is not the primary
concern of the community and a research

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In all of this, investigators will need to
recognize that sharing of control and
authority is a given. Be prepared for iterative
consent procedures for many aspects of the
project—including such issues as
manipulation of materials and secondary use of
samples (viewed by many communities as a
new study). Ongoing communication and
management will also be significant time
commitments in CBPR. When dealing with
tribal governments, it may be necessary to
renegotiate many issues when new members
join the tribal council.

Investigators need to take the time to obtain
community feedback and revisions to ensure
the project design and interpretation of results
includes cultural issues and subtleties. One
person’s “myth” is another’s deeply held belief.
It is also important that the community
understands the procedures and results of
research and implications for their benefit. For
example, significant educational efforts may be
needed for some tests or procedures such as
an autopsy.
Probe and clarify your assumptions. Members
of the community are receiving their
information from many sources. What you
assume is common knowledge may not be so.
Not everyone feels positively regarding the
human genome project and other genetics
research projects. Be willing to respect diverse
opinions and question your own assumptions
regarding the value of research to communities
and healthcare.

3. Use complete and clear language, not
jargon
Experts in any area communicate with others in
the field by jargon and technical terminology.
Other team members and members of the
community are not likely to be fluent in what is
essentially another language. For example,
“Standard procedures” does not provide
sufficient information for the research
participant to truly understand what is involved
in the project. Use plain language and explain
fully the concepts involved in the project.

IN SUMMARY

Translational research is the process by which
basic science discoveries are advanced into
new clinical operations leading to improved
health care outcomes. It is increasingly
recognized, however, that translational
research is not a “one size fits all” endeavor
and that certain populations are significantly
underserved in the current approach to linking
research and healthcare.

4. Exercise cultural sensitivity
The beliefs and customs of each community
must be respected in all aspects of the research
project. Commit time to learn about the culture
of the community and participate in community
events in order to build a trusting, long term
relationship.

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As an extension of the current Arizona initiative
that seeks to enhance the contributions of
translational research to healthcare, the
Arizona Biomedical Research Commission and
The Flinn Foundation convened a broadly
representative group of major academic and
research institutions and healthcare providers
in Arizona to better understand how translational
research can serve the needs of Arizona’s
Special Populations by improving and
expanding the partnerships between their
organizations and members of Arizona’s special
populations.
The group chose as their initial focus the
advancement of collaboration mechanisms that
establish community-based participatory
research (CBPR) with initial concentrations on
working with Native American and
Hispanic/Latino populations.
The accomplishment of a key goal—
development of this handbook to guide
investigators in CBPR—is the result of work by
and information from many individuals. The
contents were developed by an investigation of
national best practices as well as input from
Hispanic/Latino community leaders.
This handbook is meant to serve as a living
document and guide for developing a
collaborative and productive dialogue with
community members that will lead to
interactions of benefit to both investigator and
community.

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ENDNOTES
16

See: Reyes C, Van de Putte L, Falcon AP, Levy
RA. Genes, Culture, and Medicines: Bridging Gaps in
Treatment for Hispanic Americans. The National
Alliance for Hispanic Health and the National
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33

Ibid.