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Policy and Practice
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Applying Community-Based Participatory Research Principles and Approaches in
Clinical Trials: Forging a New Model for Cancer Clinical Research
Sarena D. Seifer, MS, MD1, Margo Michaels, MPH2, and Stacy Collins, MSW2
(1) Community-Campus Partnerships for Health; (2) Education Network Access to Advance Clinical Trials
Submitted 17 July 2009, revised 21 October 2009, accepted 24 November 2009. The Communities as Partners in Cancer Clinical Trials: Changing Research, Practice and
Policy initiative was supported by conference grant R13-HS016471 from the Agency for Healthcare Research and Quality, with co-funding from the National Cancer
Institute. Additional support was provided by the Lance Armstrong Foundation, American Society of Clinical Oncology, California Breast Cancer Research Program, and
Intercultural Cancer Council; unrestricted educational funds from Genentech and GlaxoSmithKline provided additional support for the initiative.
Abstract
Although an estimated 20% of adult cancer patients are
medically eligible for a cancer treatment clinical trial (CCT),1
adult trial participation in the U.S. remains under 3%.2–4
Participation rates are even lower among ethnic and racial
minorities and the medically underserved, who tend to have
higher cancer mortality rates than the population as a
whole.5–7 Given persistent cancer health disparities in these
populations, cancer clinical trial participation is increasingly
an issue of social justice. Community-based participatory
research (CBPR) approaches have been repeatedly recom­
mended as a key strategy for increasing and diversifying
cancer clinical trial participation and enhancing their
relevance and quality. In 2006, Community–Campus
Partnership for Health (CCPH) and the Education Network
to Advance Cancer Clinical Trials (ENACCT) received
funding from the Agency for Healthcare Research and
Quality and the National Cancer Institute (NCI), along with
industry and nonprofit partners, to develop the first set of
national recommendations to employ CBPR approaches in
multisite, phase III cancer clinical trials. The Communities
as Partners in Cancer Clinical Trials: Changing Research,
Practice and Policy final report, developed through a national
advisory committee, two stakeholder meetings and a public
vetting process, makes more than fifty detailed recom­men­
da­tions to engage communities in specific and meaningful
ways throughout the cancer clinical trial process.1 The report
is the first to provide specific guidance as to how and why
clinical trials should involve communities affected by
cancer—from trial design to implementation to dissemination
of results. This paper describes the background and rationale
for the initiative, the process used to develop and disseminate
the report, and the challenges and opportunities for
implementing the report’s community-based approaches to
cancer clinical research.
Keywords
Clinical research, community-based participatory research,
minority recruitment and retention, clinical trials, patient
advocate, community advisory board, community-engaged
research
The Problem
either no treatment or treatment that does not meet currently
A
accepted standards of care.10–16
lthough an estimated 20% of adult cancer patients are
The low accrual rate in CCTs has a significant effect on
medically eligible for a CCT, adult trial participation
both the quality of research and the rate at which new scientific
in the United States remains under 3%.
Accrual
discoveries are made.17,18 Better representation of all those
rates are even lower among ethnic and racial minorities and
affected by cancer—including different races, ethnicities,
the medically underserved,6–8 who tend to have higher cancer
age groups and income levels—is critical to producing more
mortality rates than the population as a whole. Ethnic and
generalizable findings to the population as a whole.8,19–22 Slow
racial minorities with cancer are also more likely to receive
or insufficient patient enrollment in clinical trials significantly
2
3–5
9
pchp.press.jhu.edu © 2010 The Johns Hopkins University Press
38
hampers trial completion and frequently results in the early
research staff in which studies are implemented, to increase
closure of clinical trials. In a recent preliminary analysis of
minority access to research participation27; and (3) address
phase III CCTs led by two national cooperative groups, 15%
persistent barriers to CCTs through the use of CBPR.26
to 30% of trials were closed owing to poor accrual (Dilts D,
personal correspondence, February 2, 2008).
The low accrual rate in CCTs—especially among eth-
Premise and Promise for Community Engagement in CCT
Design and Implementation
nic and racial minorities, older adults and other medically
Central to many successful initiatives that seek to under-
underserved groups—is a matter of social justice. Indeed,
stand and improve the health of communities—in particular,
the principles of social justice, as articulated in the Belmont
ethnic and racial minorities and low-income people—are
report on research involving human subjects, demand better
participatory research models in which communities are
representation of all populations in CCTs to ensure the just
actively engaged throughout the research process through
distribution of the benefits and burdens of research participa-
partnerships with researchers.28
6
22
tion. A number of reports have observed that enhancing
In 2004, the Agency for Healthcare Research and Quality
trial participation can address persistent disparities in cancer
(AHRQ) issued an evidence report suggesting that CBPR can
incidence, morbidity, and mortality.
enhance recruitment and retention of study participants and
20
23,24
The literature has identified numerous barriers that nega-
improve research quality and outcomes.29 The report cited
tively affect participation in cancer clinical research. Experts
the application of CBPR across a wide range of clinical and
have repeatedly noted that to both overcome these barriers
behavioral research, including cancer, substance abuse, hyper-
and develop successful approaches to recruitment, such efforts
tension, heart disease, diabetes, and HIV/AIDS.
25
must (1) identify effective strategies to build trust between
Although there are few reported applications of CBPR
researchers, patients and the broader community26; (2) change
approaches throughout all aspects of a clinical trial,30,31 a
both the local environment and the behaviors of clinical
number of groups have implemented community engagement
Figure 1. Community Engagement Opportunities at Each Stage of Phase III CCT Design & Implementation
Progress in Community Health Partnerships: Research, Education, and Action
Spring 2010 • vol 4.1
strategies in therapeutic clinical research. Perhaps the best
National Advisory Committee to guide the initiative, com-
example of comprehensive and systematic implementation
posed of national leaders from five key stakeholder groups:
of CBPR principles and approaches in clinical research is the
(1) cancer clinical research investigators and their staff from
National Institute of Allergy and Infectious Diseases–funded
both academic and community settings; (2) cancer clinical
HIV/AIDS clinical trials network program that requires the
research sponsors from both government and industry; (3)
involvement of community members.
cancer patient advocates and advocacy organizations; (4)
32
Numerous government-sponsored reports have called for
community-based organizations whose constituencies are
the need to involve community members in clinical research
disproportionately affected by cancer; and (5) experts in
design, implementation, outreach, and accrual
CBPR. The committee met monthly by phone for the first 18
3,33–36
to improve
clinical research participation, especially among ethnic and
racial minorities. Notably, the AHRQ evidence report recommended that future research “to improve participation of
months of the initiative.
Stakeholder Meetings
underrepresented populations in CCTs . . . be developed within
With the guidance of the National Advisory Committee,
the framework of CBPR, with community involvement through
ENACCT and CCPH convened in September 2007 a diverse
all phases of the research.” Despite these repeated calls for
group of seventy people from the above-mentioned key
action, none of these recommendations have been systemati-
stakeholder groups to develop recommendations for applying
cally implemented and are still largely absent from national
CBPR principles and approaches to phase III CCTs.
26
policy forums and efforts to reform the CCT enterprise.
37
38
A background paper articulating the rationale and goals
In 2006, CCPH and the ENACCT sought and received fund-
of the project, along with a set of invited commentaries on
ing from the AHRQ and the NCI to develop a strategic plan for
the paper,39 were shared with participants before the meeting.
applying CBPR principles and approaches to multi-site, phase
To ensure a shared understanding of both CCTs and CBPR,
III CCTs. The funded initiative, “Communities as Partners in
orientation sessions on each topic were held. During the
Cancer Clinical Trials: Changing Research, Practice and Policy”
meeting, participants discussed the definition of community
envisioned a phase III CCT system that meaningfully engages
and who “represents” community, the need for improving
communities at all points throughout the research process
community engagement in the CCT process, the pressures
(Figure 1), from national design to local implementation to
faced by cancer researchers and institutions, and how engage-
dissemination. The Lance Armstrong Foundation, American
ment works in other clinical research systems. In particular,
Society of Clinical Oncology, California Breast Cancer Research
participants examined the federally funded AIDS Clinical
Program, Intercultural Cancer Council and unrestricted edu-
Trials Group, which has an analogous structure to the NCI
cational funds from Genentech and GlaxoSmithKline provided
National Cooperative Groups,40 but has incorporated com-
additional support for the initiative. This paper describes the
munity engagement and CBPR principles since the late 1980s.
background and rationale for the initiative, the process used
At this first of two gatherings, participants articulated a vision
to develop and disseminate the report, and the challenges and
for the future and guiding principles for the development of
opportunities for implementing the report’s community based
the strategic plan, as described in Table 1.
approaches to cancer clinical research.
Developing a Strategic Plan for CBPR Approaches in
Phase III Cancer Clinical Trials
The initiative involved a series of key steps that we briefly
describe below.
National Advisory Panel
ENACCT and CCPH established a fourteen-member
Seifer, Michaels, & Collins
Participants adopted the definition of “community”
advanced by the Centers for Disease Control and Prevention:
those whose participation is necessary for the implementation
of the research and whose well-being is likely to be affected by
the conduct of the research.41 For years, cancer patient advocates have been representing the cancer patient “community,”
providing critical input into the design and implementation
of CCTs at both national and local levels. However, to reap
the full benefit of community engagement in phase III CCTs,
Applying CBPR to Clinical Trials
39
40
W
Analysis, Interpretation and Dissemination. The workgroups
hen considering who best represents the
met via conference call over a 5-month period to develop
community perspective in phase III CCTs,
initial recommendations for research, practice, and policy.
participants recommended the inclusion of both
The draft recommendations were circulated widely for com-
community representatives and patient advocates,
ment through listserv postings, conference presentations,
recognizing that both are essential to the research
and teleconferences. We received more than fifty comments
process:
from Cooperative Group chairs, patient advocates, CBPR and
• Community Representatives have experience
with the healthy population at risk and
ideally are affiliated with a community-based
organization or group whose constituency is
disproportionately affected by cancer.
public health researchers, oncologists, research nurses, and
• Patient Advocates have experience as a patient
with cancer, caregiver, or family member and
ideally are affiliated with a cancer advocacy
organization or group.
comments received. Supportive comments fell into five main
participants recommended that (1) the definition of community be expanded, such that communities disproportionately
affected by cancer morbidity and mortality should also be
well-represented (see side bar); (2) there should be a greater
number of community representatives, and (3) their roles be
systematized, strengthened, and made more inclusive.
Drafting and Vetting the Recommendations
After the first stakeholder meeting, participants joined
one of three workgroups—National Level Trial Design and
Implementation; Local Level Trial Implementation; or Data
staff from the NCI and the AHRQ. With guidance from the
National Advisory Committee, the comments were reviewed
and the predominant themes were identified. These are summarized below and illustrated with a direct quote from the
categories:
1. The recommendations have potential to improve the
design and conduct of CCTs: “These recommendations
. . . [are] useful . . . both to improve the recruitment of
study participants and for improving interpretation of
study results for different population groups.”
2. Strengthen the role and impact of community/patient
representatives: “Most of us have had a research focus
that has removed us from spending a lot of time in
meetings with communities . . . we then lose that connection. To include those advocates whose primary
focus is working with communities is critical.”
3. Recruit, prepare, and support community/patient
repre­sentatives: “The advocates really need to take
responsibility for training their new colleagues because
they are the only ones who really know how the job
is done.”
Table 1. Stakeholder Meeting Vision for the Future and Guiding Principles
Vision for the Future
Principles for
Developing the
Strategic Plan
A Coordinated National-local System That Includes Trained Community Representatives and Patient Advocates
Involved in Each Component of Phase III CCTs.
Focus on improving process and outcome of phase III CCTs
Focus on recommendations that facilitate application of CBPR principles and community engagement strategies
Evaluate recommendations against CBPR principles
Acknowledge the many access barriers to CCTs that are beyond the scope of this project
Acknowledge that federal research priorities impact the plan but are beyond the scope of this project
Acknowledge that we cannot fix all that may be broken about the U.S. health care system
Build upon efforts of those in the CCT system currently working to engage communities
Challenge the CCT system to change, while also working within the system
Progress in Community Health Partnerships: Research, Education, and Action
Spring 2010 • vol 4.1
4. Change is challenging and time consuming, but ultimately worth the effort: “The expectations outlined . .
. will be challenging to meet, but the potential advance
in individual and community understanding and use of
research findings is great.”
5. Test out these ideas: “Several pilots should be
conducted.”
Critical comments fell into six main categories:
1. Need strong rationale or evidence base: “You need documented examples of where having communities involved
early in the process materially changed the study design,
study execution, or, ultimately the accrual rate.”
2. Need to more fully acknowledge existing patient advocates/advocate role: “[T]here are patient representatives
that have been involved (in cooperative groups) since
1992. . . . I agree that we need a more concerted and
focused effort, but to deny that anything has been done
doesn’t paint an accurate or fair picture.”
“unfunded mandates” wherein groups will be required
to take certain steps by the NCI without any incremental funding to do so.”
5. Concern over further slowing down trials: “In the end
we may improve the diversity of patients on trial, but
the results may be years slower in arriving and, if all of
the recommendations are funded, we may have even
less money to do research.”
6. Concern over misplaced priorities: “If a person in a
community is aware of a clinical trial and anxious to
enroll, that does them no good if their doctor is not
prepared to provide the option.”
Project participants reconvened in March 2008 to revise
the recommendations based on the comments received. At
the meeting, participants also articulated the potential benefits
of a community-engaged CCT system (Table 2).
The revised draft recommendations were again widely
3. Need to pay attention to current realities: “[T]he cooperative groups are miserably under-funded at present .
. . our academic hospitals have to contribute an average
of $3,000–$5,000 for every new patient they accrue to
a trial.”
circulate for comment and revised before being released in
4. Concern over unfunded mandates: “The recommendations . . . represent a large number of potentially
to dissemination of results.. The report’s fifty-eight recom-
October 2008 as the Communities as Partners final report.1
The report is the first to provide specific guidance as to why
and how the CCT process should involve communities
affected by cancer—from trial design to implementation
mendations fall into seven major categories (Table 3) and
Table 2. Potential Benefits of a Community-Engaged CCT System
CBPR Approaches in Trial Design at the
National Level Can Help to:
· Ensure well-designed, high quality, costeffective trials that will accrue, in a timely
manner, sufficient numbers of patients and
patients from diverse backgrounds
· Ensure that trials are more universally
relevant to the real lives of patients
· Increase participation of underrepresented
populations in trials
· Enhance community awareness of and
trust in clinical research
CBPR Approaches in Trial Implementation at
the Local Level Can Help to:
· Ensure that clinical trials opened for local
accrual can more readily accrue patients
· Promote the early adoption of safe and
effective therapies at the community level
· Enhance community comfort with and
trust of researchers, research institutions
and the research process
· Increase equitable access to state-of-the-art
care and reduce cancer health disparities
· Enhance community understanding about
clinical research, enabling them to make
more informed decisions about whether to
participate in a trial
· Increase the rigor and validity of the
research
· Encourage researchers to think of
community involvement/engagement as a
benefit, not a burden
Seifer, Michaels, & Collins
CBPR Approaches in the Interpretation,
Dissemination and Implementation of
Cancer Research Studies Can Help to:
· Improve health literacy
· Build greater trust in the clinical trials
system
· Build greater public awareness about the
importance of CCTs
· Generate stronger participation in CCTs
· Identify issues that should be addressed in
phase IV effectiveness studies
· Enhance dissemination of research findings
to the public and community clinicians
Applying CBPR to Clinical Trials
41
42
target specific key stakeholders in the CCT process, including
the Vanderbilt Ingram Cancer Center, and the UNC Carolina
the NCI, NCI-sponsored National Cooperative Groups, the
Community Network.45
U.S. Food and Drug Administration, the Office of Human
ENACCT and CCPH are convening the four selected sites
Research Protections, industry, institutional review boards,
for monthly technical assistance conference calls and several
and local research sites and investigators. In addition to
have also sought on-site training. All are conducting process
making recommendations, the report also includes extensive
evaluations and are leveraging other resources to sustain
appendices that suggest action steps and resources to support
their work beyond the 1-year period of seed grant funding.
their implementation.
The results of these efforts will be reported in a subsequent
report.
Disseminating and Implementing the Report
The report dissemination process has involved a two-
Challenges to Implementing the Recommendations
pronged approach: outreach to key audiences through
There are a number of challenges to implementing the
conferences and meetings, and support for groups seeking
report’s recommendations. We have identified the main
to implement specific recommendations.
comments and criticisms that were raised during the vetting
of the draft report recommendations. We now highlight the
Outreach to Key Audiences
two challenges that have proven to be the most significant
As the largest provider of publicly funded phase III CCTs,
the NCI-sponsored Cooperative Groups were a key dissemination audience. Project staff presented at four Cooperative
Group semi-annual meetings.42 Other audiences included
institutional review boards, National Institutes of Health
Clinical and Translational Science Awardees, NCI staff, and
the American Cancer Society health disparities community.
throughout this initiative and during the year since the report
was released.
Mistrust and Lack of an Organized Constituency to Advocate
for Change
Unlike HIV/AIDS research, which has long had an expec-
43
tation of community involvement from both the researcher
The AHRQ also invited a presentation on the report at its
and patient perspective, the same does not hold true for in
annual conference as the sole example of nonprofit organiza-
cancer clinical research. Although cancer patient advocates
tions utilizing its evidence reports as a foundation for a policy
have worked for years to gain influence within the CCT
change initiative.
research system, they have been few in number, their influ-
44
The “Implementation Partners” Program
Typically, national reports are released as stand-alone
documents with no support provided for their implementa-
ence is highly variable, and the mandate for their involvement
is weak at best. Some researchers continue to question the
need for their role, let alone expanding their ranks to include
community representatives.
tion. Industry funding for the project allowed us to release
Seeking to achieve a unified vision among the five distinct
the report with a request for proposals from organizations
constituencies assembled by this project proved challenging,
seeking to implement specific report recommendations.
despite several deliberate attempts to orient them to each
These “implementation partners” would each receive a
other’s perspectives and “world views.” A significant portion
modest 1-year seed grant, along with training and technical
of the first meeting was spent sharing perspectives on an
assistance from ENACCT and CCPH. Forty-three organiza-
established clinical research “system” that some participants—
tions submitted proposals, including NCI designated cancer
especially those from community-based organizations—felt
centers, community-based organizations, and community
ready to challenge, whereas others—especially those working
oncology practices from twenty-six states. After a merit review
in the system—were quick to defend. In some cases, groups
process, these four organizations were selected to participate:
were skeptical of each others’ motives and capabilities. Some
Columbia St. Mary’s Health System in Milwaukee, the Grand
CBPR experts did not view community engagement in CCTs
Rapids Michigan Community Clinical Oncology Program,
as a high priority and were skeptical that CCTs could truly be
Progress in Community Health Partnerships: Research, Education, and Action
Spring 2010 • vol 4.1
Table 3. Report Recommendations for Community Engagement in Phase III CCTs
Rationale
Example Recommendation:
We recommend that . . .
It is critical to broaden community involvement in clinical
research through expanded opportunities for both CRs and PAs.
However, if they are to be ethically and meaningfully involved
in the research process, the system must ensure fairness,
transparency, training, clear role definition, and meaningful
integration.
Public and private sponsors of Phase III CCTs:
(I.1) Ensure that the application and selection process
for CR/PAs serving at the national level is open and
transparent. Opportunities to serve should be widely
communicated both to traditional and non-traditional
sources of potential candidates.
II. Ensuring Community
Perspectives in the
Institutional Review
Board (IRB) Review
Process
Although phase III CCTs are designed nationally, IRBs play an
important role not only in approving the study from an ethical
perspective, but also in ensuring locally appropriate consent
and recruitment activities. IRBs present an important and often
overlooked opportunity for community participation.
IRBs that review Phase III CCTs, including the NCI
Central IRB:
(II.1) Be comprised of 25% community IRB members
who are properly oriented, trained, mentored and
compensated by the IRB sponsoring institution.
III. Improving the Informed
Consent Process
The complexity of the informed consent process presents a
formidable barrier to CCTs. Existing tools—such as the Office
of Human Research Protections approved “short form” process
and patient navigation – are underutilized in the CCT system.
Moreover, approaches to address the needs of non-English
speaking, Limited English Proficiency (LEP) and low-literacy
individuals in the informed consent process are sorely needed.
IRBs that review Phase III CCTs, including the
NCI Central IRB:
(III.3) Ensure that all members are trained in
approaches to address the needs of minority, lowliteracy, poor and elderly, underserved, and LEP
populations in the informed consent process.
IV. Ensuring Community
Perspectives in Proto­col
Development, Trial
Design and
Implementation
Nationally, trained CR/PAs should be actively involved in
protocol development and trial design. Locally, CR/PAs can help
to ensure that trial selection and patient recruitment/retention
are aligned with community needs, capacities and culture.
Public and private sponsors of Phase III CCTs:
(IV.2) Encourage and permit funding for local research
sites to develop mechanisms, such as community
advisory boards (CABs), for ongoing community
participation in study implementation.
V. Improving Trial
Participant Recruit­
ment, Accrual and
Retention
Accrual remains an enormous challenge for sponsors and
investigators; moreover, substantial uncertainty exists about
effective approaches for CCT recruitment, especially among
minority populations. Clearly defined recruitment and retention
plans, and use of the Culturally and Linguistically Appropriate
Services Standards may increase the likelihood of recruitment
success.
The National Cancer Institute:
(V.10) Expand research funding to document and
demonstrate promising practices in CCT recruitment
and retention efforts, and in particular, on efforts to
involve members of underserved minority, non-English
speaking, poor and elderly communities.
VI. Enhancing Local
Community Support for
Cancer Research
Building trust in the clinical research process increases the
likelihood that affected communities are invested in and
supportive of the research being done locally. By enhancing
community literacy about CCTs, it is possible to change social
norms, so that when a person receives a cancer diagnosis, s/he is
more likely to inquire about CCTs as an option for treatment.
Local Research Sites implementing phase III CCTs:
(VI.4) Engage in outreach activities with community
groups, particularly those working to reduce health
disparities, to educate the broader community about
CCTs beyond any particular trial. Whenever possible,
research sites located in the same geographic area
should collaborate in these efforts.
VII. Enhancing Community
Interpretation,
Dissemination and
Implementation of Trial
Outcomes
Opportunities for community engagement in the final stage
of a Phase III CCT include better communication of trial
results to participants, as well as broader use of CR/PAs in
the interpretation and dissemination of trial outcomes to the
broader community.
The National Cancer Institute:
(VII.3) Partner with advocacy and community-based
groups to set priorities for interpretation, broad
dissemination, and implementation of study results,
based on importance and applicability. There should be
particular emphasis on reaching underserved, minority,
LEP, low-literacy, poor and elderly populations.
Category
I.
Ensuring a Mean­ing­ful
Role for Community
Repre­sentatives/ Patient
Advocates (CR/PAs) in
Phase III CCTs
Seifer, Michaels, & Collins
Applying CBPR to Clinical Trials
43
44
participatory in their design. Some researchers and advocates
felt that their current efforts to include advocates in the research
Opportunities for Implementing the Proposed
Recommendations
process were being minimized or criticized. Some patient
Despite the challenges, there are a number of paradigm
advocates have questioned the need for broadening their
shifts underway at the federal level that could help to acceler-
ranks and making their roles more formal. Although many
ate implementation of the report’s recommendations. The
are supporting the resulting vision and recommendations—
director of the NCI has commissioned the “Advocates in
some enthusiastically—no champions or lead organizations
Research Working Group,” whose mission is to develop rec-
emerged who were willing to make the recommendations a
ommendations for more consistent integration of advocates
significant advocacy agenda.
across the NCI. The NCI Clinical Trials Working Group is
A Well-Established Cancer Research System Reluctant or
Unable to Change
also examining the role of advocates involved in concept and
protocol review within NCI scientific review committees. The
increased focus at NIH on community engagement in clinical
Despite the interest generated by the report (as evidenced
and translational research, most visibly apparent in the NIH
by the hundreds of downloads of the report from the project
Trust Initiative and the Clinical and Translational Science
web site and the response to the request for proposals for
Award program, is contributing to a growing interest in CBPR
implementation seed funding) and the ongoing difficulty in
approaches among academic health centers. The report also
recruiting and retaining ethnic and racial minority partici-
aligns with and advances the Obama administration’s agenda
pants in CCTs, the cancer research community has voiced
more broadly around greater transparency, public engage-
concerns about the recommendations and their capacity to
ment, and interagency cooperation.
implement them. Many cancer research institutions lack both
the infrastructure and external relationships to begin the
Conclusion
journey toward community engagement in clinical research.
For cancer clinical research to achieve its full potential in
For example, although all of the organizations applying for
reducing cancer deaths and eliminating cancer disparities, it
implementation seed funding conveyed a sincere desire to
is imperative to foster greater community involvement in the
implement specific report recommendations, the vast majority
design and implementation of CCTs. Communities must bet-
were unable to articulate a plan to operationalize community
ter understand how CCTs work, how members can be involved
engagement strategies, instead offering to implement tradi-
as participants and advisors, and how they can maximally
tional patient education and outreach programs. Very few
benefit from the results. Similarly, researchers must better
were able to name actual community leaders or community
understand how communities are organized and function,
organizations with whom they would partner. Further, most
how community involvement can benefit cancer research, and
did not consider the broader institutional culture in which
how to effectively engage communities in meaningful roles.
community members would need to be supported and
The Communities as Partners report calls for nothing less than
engaged.
a paradigm shift in the way CCTs are conducted.
Progress in Community Health Partnerships: Research, Education, and Action
Spring 2010 • vol 4.1
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Progress in Community Health Partnerships: Research, Education, and Action
Spring 2010 • vol 4.1