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National Breast Cancer Research Summit
Mapping the Future
May 26 - 27, 2008 . Toronto . Canada
Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer
Summary 47
Table 51
Worksheets
About CBCRA
Other
Agenda
1. To develop the first cut of a national breast cancer research framework, including identification of:
• Pan-Canadian research priorities for new or enhanced funding across the cancer continuum
• Gaps and opportunities across the breast cancer research system
• Principles to guide funding collaboration
• Preliminary opportunities for collaborative activity among funders
2. To develop an initial approach to move the framework into action, consisting of:
• Agreement as to how framework will be finalized, shared and refreshed
• Discussion of possible contribution of CBCRA and other players.
Desired Outcomes
• Shared commitment to the benefits of developing a national breast cancer research framework and agreement to work together.
• A frank and open discussion of what it will take to achieve these desired benefits.
• A compelling action agenda for making progress: plans for moving forward, agreed areas of focus, partnership opportunities,
collaborations, new models.
Executive Summary
Introduction
Stakeholders agree to the importance of developing a national breast cancer research framework at this time. While significant advance-
ments in breast cancer research, screening and treatment have been achieved and incidence and mortality rates continue to decline,
female breast cancer rates in Canada remain amongst the highest in the world1.
The partners of the Canadian Breast Cancer Research Alliance (CBCRA) have invited some 70 breast cancer leaders – funders, survivors,
policy influencers, researchers, community advocates - as well as influential international guests, to gather in Toronto on May 26 and 27,
2008. The purpose of this National Summit is to develop a shared vision of a pan-Canadian breast cancer research framework that will
anticipate and be responsive to new scientific opportunities and challenges, and improve co-ordination of breast cancer research efforts.
In anticipation of this event, CBCRA commissioned several background data gathering projects to level the playing field in terms of knowl-
edge of current breast cancer initiatives. Input has been solicited from researchers, policy influencers, survivors and funders on a number of
topics germane to the future of breast cancer research. They were asked to identify research priorities, comment on the overall ‘health’ of
the breast cancer research system, indicate what was needed in a national framework and opine on who needs to be involved in its devel-
opment. Results of these conversations are presented, briefly, below. More information is available in the sections following in this binder.
The full reports and other related information is available on the CBCRA website (www.breast.cancer.ca).
Initial data gathering efforts to identify recent breast cancer research prioritization initiatives in other jurisdictions resulted in learnings
about international, UK and US projects occurring within the last 18 months. Further information about these is included in the binder – and
a plenary session at the Summit has been dedicated to helping all participants better understand some of the international strengths and
gaps as an important backdrop to the development of the Canadian framework.
Stakeholder Priorities
Included in this binder are summaries of the current breast cancer research issues that are of concern to stakeholders. The binder materials
provide participants with recent insights, areas of consensus and of disagreement in order to level the playing field of knowledge coming
into the Summit. All participants, regardless of their backgrounds, will have had the opportunity to hear the voice of stakeholders through
this data. Conversations at the Summit are designed to build off this awareness to arrive, through engagement and dialogue, at some
consensus around a small number of focus areas.
Summaries of these data gathering exercises are available in the binder, together with summary tables and a link to the full report on the
website. What follows are the highlights of each together with the highest level analysis of the data. This analysis is presented in table
format, titled Synthesis of Top Breast Cancer Research Priorities Identified by CSO Codes, and provides a ‘snapshot’ overview of the con-
solidated dataset. Within the overall organizing framework of the Common Scientific Outline (CSO), the following information is provided:
• Linkages to the Cancer Control Continuum (Column 1)
• Funding sources and the scale of funding by CSO category (Column 2)
• Within the CSO category, the prioritized CSO codes are listed (based on a detailed analytical exercise) that appear to be most
favoured by all stakeholder groups (Column 3)
• Examples of the types of issues and research questions identified by stakeholders are then put forward (Column 4)
• The final two columns include information identifying which stakeholder group prioritized the code (Column 5), and lastly the
relevant international priorities corresponding to the prioritized CSO code are listed (Column 6).
1
Canadian Cancer Statistics, 2007
NCIC’s participants included a higher percentage of clinicians. Not surprising, the priorities identified focused on screening, prevention
and treatment, but also acknowledged the importance of biological and system modeling research. Participants at the CBCRA workshop
reached consensus around 19 priorities (listed in the Key Findings section under researchers). Areas of commonality across the two data
sets include:
• Biomarkers; targeted and tailored treatment
• Improved screening tools and programs
• Knowledge translation
• Risk reduction/prevention
• Metastatic breast cancer
• Survivorship and psychosocial interventions
• Consideration of marginalized and sub-populations.
Their issues and interests cluster logically into the following key areas:
• Etiology and trying to find a cure
• Prevention and Early Detection: in the absence of a cure, a focus on preventing and particularly, screening
• Delivery of Health Care and the associated cost: included in this cluster is knowledge translation and communication. Policy
influencers are also interested in learning more about complementary and alternative approaches.
Policy influencers strongly support the need for a national breast cancer research framework. They see value in bringing the different actors
together to facilitate better understanding across the system and better coordination of actions. They also support an inclusive approach to
the development of the framework and the involvement of organizations such as CBCRA, CCRA, CIHR, PHAC, CPAC and CAPCA. In terms of
their own role and changes to the research system, there is a strong call for a ‘regularization and formalization’ of interaction among policy
influencers, researchers and stakeholders.
The predominant focus for this stakeholder group is on prevention, screening and treatment. They are also concerned about health system
and service issues (for example: issues of waiting times; coordination/integration; financial barriers; supply of qualified people; wide varia-
tion in protocols and quality of services; significant challenges in rural/remote areas; the knowledge; and communication skills of physi-
cians and other professionals working with women going through the trauma of the diagnostic and treatment experience). Specific areas of
special concern include:
• The broad topic of breast cancer and younger women within the categories of prevention, screening, treatment, supportive
care, and health services/systems.
• The importance of research on metastatic cancer
• The issue of psychosocial and other supports needed before, during and after treatment
• More research into environmental causes and risk factors.
• More research on a wide range of alternative and complementary treatment approaches.
With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also
expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern
about the slow progress on many important issues and the need to focus research efforts.
Two complementary data gathering approaches were used to obtain funder input: a web-based survey which received a 35% response
rate, supplemented by 13 key informant interviews. The stratified interview sample was created based on a selection of leaders in breast
cancer funding agencies across the spectrum: national, provincial, research institutes, cancer care agencies and cancer foundations.
Current priorities for funders include: risk factors and prevention, treatment, developing research capacity and laboratory/basic research.
In rating the previously identified 19 priorities (see researcher section), their highest priorities are biomarkers, metastases and knowledge
translation. They are also concerned about health care delivery. Their emerging priorities and/or areas of concern include: genetics related
research, the impact of environmental risk factors, increasing the amount of translational research and expanding the focus on metastasis-
related research.
Most funders have some experience with collaboration. Thoughtful suggestions were put forward with respect to building successful col-
laborations that could provide guidance to the development of a set of collaboration principles moving forward.
77% of the funders support the development of the national breast cancer research framework, with a particular request that the frame-
work is positioned within a global context. They expect it to be comprehensive, while providing sufficient specificity and clarity of direction.
Including a knowledge translation component is described as being a priority.
Identified gaps to be addressed in the research system in order to facilitate the delivery of world-class breast cancer research include:
funding for multi-disciplinary teams; increasing the number of team grants; increasing the number of clinician/scientists and developing
breast cancer research leaders.
1. Biology 40% 1.4 Cancer progression and metastasis • Early detection of metastasis Researchers: SRAW, NCIC Summit (I) DCIS to progression: determine the
BCCA disease, if oligometastatic disease is Survivors factors in DCIS and/or ADH leading to
*Prevention CBCRA treatable with curable intent Funders progression into invasive carcinoma
*Diagnosis CIHR (I) Gene mutations responsible for
*Treatment TFF/NCIC • Does the ability to metastasize metastasis: investigate which gene
CCS/NCIC develop during growth at the primary mutations in a cancer lead to
CBCF site? metastases
Fondation du cancer du sein du Québec
FRSQ • Tumor dormancy (II) Gain a greater understanding
NRC of the genetic changes that occur
• Risk/prevention of recurrence; why within atypias and DCIS (theme #2
OICR
Saskatchewan Cancer Agency recurrence after 5 years? Policy Influencers’ Initiation of breast cancer)
Perspectives on (II) Consider genetic signature
The Cancer Research Society • Finding new ways to ensure that when exploring progression biology
Breast Cancer Research and designing clinical trials (theme
cancer that spreads to other parts of
the body is found early # 3 Progression of breast cancer)
(II) Develop methods for easy,
reproducible monitoring of
response to and development of
resistance to therapy, as well as
early disease progression (theme
#4 Therapies and targets in breast
cancer)
(II) Increase research efforts into
the role of the tumour microenvi-
ronment and the immune system
in the development and treatment
of breast cancer (theme #4 Thera-
Policy Influencers’ pies and targets in breast cancer)
Perspectives on
CSO Code³ Breast Cancer Research
7. Scientific model systems 1% 7.1 Development and characterization • Animal models of BC progression Researchers: SRAW (II) Improve preclinical models
CBCRA of model system Breast cancer modeling (Generic needs #1)
*Prevention (II) Cross-disciplinary working
*Diagnosis (Generic needs #3)
(II) Develop three-dimensional cell
*Treatment
culture models, containing multiple
cell types, which reflects the
tissue architecture of the normal
and diseased breast (theme #2
Initiation of breast cancer)
(II) Generate better animal models,
particularly for ER-positive tumours,
in which gene expression can be
manipulated in all cell types of the
mammary gland and will not be
altered by transdifferentiation or
dedifferentiation (theme #2
Initiation of breast cancer)
2. Etiology 15% 2.1 Exogenous factors in Exposure to risk factors: biomarkers of Researchers: (III) Ethnic, racial and other disparities
CBCRA the Origin and Cause of Cancer exposure to risk factors (environment) SRAW, in breast cancer incidence and survival
*Prevention CIHR through long term cohort studies NCIC Summit (III) Intersection of multiple factors that
*Diagnosis Fondation du cancer du sein du Québec Survivors impact breast cancer
CBCF • How the food we eat, body weight Policy makers
TFF/NCIC and exercise relate to the risk of breast Funders
cancer
• Why is breast cancer among young
women/pre-menopausal increasing?
• What are the key causes of breast
cancer generally across the population
and within certain cultural groups?
• Lifestyle influence on breast cancer: Researchers: SRAW, NCIC Summit, (II) Improve risk prevention models
3. Prevention 2% 3.1 Interventions to prevent cancer:
How do nutrition/lifestyle/natural Vision 2020 BC (theme #6 Prevention of breast
CBCF personal behaviours that affect cancer cancer)
*Prevention risk remedies influence cancer formation, Survivors
(II) Establish the potential benefits
*Treatment 3.2 Nutritional science in cancer cancer progression and effectiveness Policy makers of diet and exercise post-diagnosis
prevention of therapy at the molecular level, Funders (Prevention a Current Priority on outcome and quality of life for
3.3 Chemoprevention including in sub-populations? with Environmental causes seen as an breast cancer patients (theme #6
• Exposure to risk factors: biomarkers Emerging Priority) Prevention of breast cancer)
of exposure to risk factors
(environment) through long term (III) Environmental links to breast
cohort studies cancer
• Clinical prevention trials in (III) Ethnic, racial and other disparities
genetically high risk women in breast cancer incidence and survival
• Behavioural interventions to (III) Intersection of multiple factors that
reduce risk impact breast cancer
• What population-based interven-
tions can be introduced to reduce
breast cancer incidence?
• Pharmaco prevention
4. Early detection, diagnosis and 13% 4.1 Technology development and/or • Biomarkers: identification of the Researchers: SRAW, NCIC Summit, (I) Molecular signatures: Identifica-
prognosis CBCRA marker discovery molecular basis/biomarkers of progres- Vision 2020 BC tion of molecular signatures to select
CBCF 4.2 Technology and/or sion, to target therapies or imaging and Survivors patients who could be spared
*Screening CIHR to understand and predict progression Funders (Early Detection a chemotherapy
• Breast cancer subtypes: better
appreciation of the functional
4. Early detection, diagnosis and NRC marker evaluation with respect to meaning of breast cancer subtypes current priority with Genomics seen (I) Optimal chemotherapy: Identify
prognosis (cont.) OICR fundamental parameters of method (e.g., “triple negative” breast can- more as an Emerging Priority) molecular features which indicate the
TFF/NCIC 4.3 Technology and/or marker testing in cer) and implications breast cancer optimal chemotherapy regimen (eg
*Treatment a clinical setting progression and for treatment across combination or sequential; anthracyclin
*Diagnosis populations or not; taxane or not)
5. Treatment 15% 5.1 Localized therapies: discovery and • Microenvironment of metastatic Researchers: SRAW, NCIC Summit, (I) Triple negative breast cancer: Iden-
CBCRA development breast cancer: therapy for metastatic Vision 2020 BC tify response/resistance mechanisms
*Treatment CIHR 5.2 Localized therapies: clinical ap- breast cancer targeted at interaction Survivors and thereby therapeutic targets for
CBCF plications between tumor and its microenviron- Funders (Targeted therapies and Ge- triple negative breast cancer
BCCA 5.3 Systemic therapies: discovery and ment nomics seen as Emerging Priorities) (I) No adjuvant therapy : Identifying
CCS/NCIC development which low risk patients require NO
NRC 5.4 Systemic therapies: clinical ap- • BC subtypes: better appreciation adjuvant therapy
OICR plications of the functional meaning of breast (I) Endocrine resistance: Identify
cancer subtypes (e.g., “triple negative” drugable targets that can be devel-
breast cancer) and implications for oped/ exploited for therapeutic gain to
treatment across populations overcome primary/secondary endocrine
resistance
• Phase I and II intervention trials: fo-
cus on multi-centre Phase I and II trials
to test novel paradigms for intervention
5. Treatment (cont.) • Research on hormonal therapy (such (II) Consider genetic signature
as tamoxifen) when exploring progression biology
and designing clinical trials (theme
# 3 Progression of breast cancer)
(II) Develop methods for easy, re-
producible monitoring of response
to and development of resistance
to therapy, as well as early disease
progression (theme #4 Therapies
and targets in breast cancer)
(II) Increase research efforts into
the role of the tumour microenvi-
ronment and the immune system
in the development and treatment
of breast cancer (theme #4 Thera-
pies and targets in breast cancer)
(II) Identify robust markers of resis-
tance or sensitivity to therapy that
can be applied across the spectrum
of breast disease from screen-
detected to metastatic breast
cancer (theme #5 Disease markers
in breast cancer)
(II) Establish the potential benefits
of diet and exercise post-diagnosis
on outcome and quality of life for
breast cancer patients (theme #6
Prevention of breast cancer
6. Cancer control, survivorship and 14% 6.1 Patient care and survivorship issues • KT interventions : knowledge trans- Researchers: SRAW, NCIC Summit, (II) Develop and rigorously evaluate
outcomes CIHR 6.4 Cost analyses and health care fer: increase knowledge about Vision 2020 BC appropriate psychosocial
CBCRA delivery interventions, what works, what Survivors interventions (theme #7
*Supportive care CBCF 6.5 Education and communication Policy makers Psychosocial aspects of breast
doesn’t, studies of uptake and ef-
cancer)
*Palliative care CCS/NCIC fectiveness on the interventions where Funders (Translational research
(II) Encourage cross-specialty
FRSQ evidence exists and Evaluation of Supportive Care collaborations to incorporate
And across complete CCC for described as Current Priorities with psychosocial issues and
• Survivorship and Quality of Life
codes 6.4 and 6.5 Health Services/New Models seen psychological theory (for example
intervention research: better
more as an Emerging Priority) psychological theories in relation to
understanding of issues and design of
behaviour change are relevant to
interventions those researching preventative
• Support across the course of the lifestyles including diet and
disease, including post-treatment exercise) (theme #7 Psychosocial
complications (e.g., pain, lymphedema), aspects of breast cancer)
(II) Ensure research gives greater
stress management, mental health and
attention to all stages of breast
reintegration issues, body image, self- cancer and that the needs of older
esteem, for patients and their family/ women and those from a range of
caregivers ethnic groups are included (theme
• Studying the social influences on #7 Psychosocial aspects of breast
cancer)
behaviour related to breast cancer
• Financial issues/aid (e.g. child care;
employment insurance)
• Health care delivery: how is care
currently being delivered? Are we
doing the things we ought to do? Need
for more coordination or communica-
tion between players and in hospitals;
more clinical teams and less individual
physicians (fewer opportunity for mis-
takes; opportunity for second opinion)
• Research into plans and policies that
will ensure there are enough trained
health care professionals for treatment
and support
• Inequities: inequities and social
determinants, equitable access to
anticancer drugs across the country
(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)
(2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.
(3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details. The codes listed in this column are the ones considered to be the most important by all stakeholders, relative to the other codes in that category.
* According to CCRA 2005 data (total $37.5M, which does not include Weekend to End Breast Cancer funding recipients and some provincial and federal funding agencies (e.g., SSHRC, Genome Canada)
(4) This column lists some examples of the type of research question/issues that stakeholders consider most important to address in that category.
(5) This column cross references the themes and priorities identified in three international studies: (i) International web-based consultation on priorities for translational breast cancer research (“The Top Ten Priorities”), (ii) Evaluation of the current knowledge
limitations in breast cancer research: a gap analysis (“The UK Gap analysis”) and (iii) Identifying gaps in breast cancer research: Addressing disparities and the roles of physical and social environment (“The CBCRP Initiatives”), against the CSO codes selected
by the stakeholders consulted for the present report.
Introduction
Why does Breast Cancer Research Continue to be Important?
Female breast cancer rates in Canada are amongst the highest in the world1. In every adult age group, breast cancer is the most common
female cancer, accounting for over 30% of all new diagnoses in women aged 20-49 and 50-69, and 20% among older women. It is the
leading cancer cause of death in young women, and ranks second and third, respectively in older ages.
One in 9 women is expected to develop breast cancer during her lifetime. One in 28 will die of it. On average, 431 Canadian women will
be diagnosed with breast cancer and 102 Canadian women will die of breast cancer every week. In 2008, an estimated 22,400 women
and 170 men will be diagnosed with breast cancer. Out of these estimated figures, 5,300 women and 50 men will die of it. It is a daunting
picture. While incidence and mortality rates have continued declining in all ages combined and in every age group, likely as the result of
the uptake of screening mammography and the use of more effective adjuvant therapies following surgery, there are many questions that
remain unresolved.
Breast cancer research in Canada is at an important crossroads. While leading edge work is underway across the country, there has never
been a more important time to meet as a community to determine a more strategic and efficient pathway to success. The National Summit
on Breast Cancer Research has the potential to achieve this goal. As a forum of leaders, it will be a source for valuable input and thought-
provoking discussion surrounding development of a much needed national breast cancer research framework. The framework, once fully
implemented, will facilitate the sharing of meaningful information and result in more effective anticipation of and response to scientific
opportunities.
The Summit is also a critical component of CBCRA’s strategic review and planning process, opening the door to a broad and inclusive
consultation process that will shape its future role and contribution to Canada’s breast cancer research community as “the voice and action
of breast cancer” in this country.
Invited Summit participants include representatives from cancer care agencies and foundations, NGOs with a mandate in cancer research,
1
All statistics taken from Canadian Cancer Statistics, 2007: produced by CCS, NCIC, Statistics Canada, provincial/territorial cancer
registries, and the Public Health Agency of Canada.
Results
National Breast Cancer Research Summit | Key Findings | Introduction p 20
provincial and federal funding organizations, health research agencies and research institutes, researchers, policy-makers, survivors and
breast cancer community leaders at both the national and regional levels.
Moving forward, CBCRA’s objective will be to support the decisions made at the Summit and to encourage and facilitate the identified
priorities for breast cancer research in Canada, maximizing synergies and reducing duplication. To that end, the outcomes of the
Summit, together with an extensive governance review that is underway, will inform the CBCRA Board of Directors in the development
of the five-year strategic plan (CBCRA-Vision 2015). The Summit discussions will also help to clarify the role and voice of the Alliance as
Canada’s co-ordinator of national breast cancer research efforts.
There were some concerns expressed about the initiative. Reassurances were sought that the role of the individual researcher will not be
overlooked in a rush to develop large projects and large teams or that the initiative would turn into merely a coordination exercise – for it
to have value, stakeholders emphasized it must be “greater than the sum of all of the parts”.
2
Note: This list is not meant to be comprehensive, merely exemplary of the type of content that stakeholders believe should be included in
a national framework.
Introduction
National Breast Cancer Research Summit | Key Findings | Results p 21
Mapping The Future
Diverse opinions were shared as to the optimal process for creating such a framework with some favouring an inclusive consultative
approach and others a ‘dream team’ expert based model. In fact, in developing the proposition, every attempt has been made to marry both
processes to ensure engagement as well as strong content.
1. The largest recent international initiative designed to identify research priorities with input from researchers across the globe.
What have become known as the “Top 10” or the St Gallen Research Priorities were issued in March, 2007
2. A rigorous national initiative undertaken in the United Kingdom over the last couple of years identified research gaps and
published (March 2008) recommendations in seven themes including: genetics, initiation, progression, therapies and targets,
disease markers, prevention, and psychosocial aspects
3. The California Breast Cancer Research Program (CBCRP) has identified research priorities related to the role of the
environment and disparities, as well as the intersections of multiple factors that impact breast cancer. They issued a funding
announcement for nine new initiatives in April, 2008
4. A Collaborative Summit on Breast Cancer Research, hosted in Virginia by key funding agencies like the Avon Foundation,
The Breast Cancer Research Foundation, Susan G Komen for the Cure and attended by some 100 invited participants: (funders,
advocates, government agencies and scientists from academic institutions and the pharmaceutical industry) led to the identi-
fication of a number of key action items, including the establishment of a National Breast Cancer Planning Committee and
the commitment to being more transparent in sharing information and reporting to the public.
See http://www.fnih.org/news/breast_cancer_summit.shtml for details.
Within Canada, similar momentum is being experienced. CBCRA held a Strategic Research Agenda Workshop in December 2006.
Proceedings are available on the CBCRA website (www.breast.cancer.ca) and the outcomes of the workshop are discussed later in this
section under the heading Summary of Canadian Breast Cancer Researcher Priorities. The results of the Summit hosted by the National
Cancer Institute of Canada (NCIC) in May 2007 were also used to inform the researcher results write-up. A multi-stakeholder workshop
was convened in Vancouver in the spring of 2007 by the BC/Yukon Region of the Canadian Breast Cancer Foundation (CBCF). “Vision 2020 -
Imagine a future without breast cancer” included in its proceedings five priorities for action related to prevention, the health care workforce,
early detection, treatment and research. Proceedings are available at www.cbcf.org/en-US/BC%20Yukon/Our%20Chapter%20in%20Action.
aspx.
Moving the Plan through to successful execution will require commitment from the funding parties, individuals and organizations with the
passion, time and energy to move a national agenda forward. Flexibility and adaptability, with strong accountability will be needed. Col-
laboration among the funders will be a further requirement given that they will need to work together in new and different ways.
3
For additional information, see http://www.toptenresearch.org/index.html - The full text article url is at:
http://breast-cancer-research.com/content/9/6/R81
4
The report on this initiative is entitled “Evaluation of the current knowledge limitations in breast cancer research: a gap analysis”, A.
Thompson et al. Breast Cancer Research, 2008, 10:R26 identified research gaps. The full text article is at
http://breast-cancer-research.com/content/10/2/R26
5
For additional information, see http://www.cabreastcancer.org/media/pr/041008.php
Results
National Breast Cancer Research Summit | Key Findings | Introduction p 22
If Collaboration Among Funders is Key, Is there Any Appetite among Funders to Play?
The data gathered indicates that funders, on the whole, are interested in collaborating to fund excellent science. Key informants and sur-
vey respondents indicate experience with collaboration (most typical areas are prevention and knowledge translation) – and based on that
track record, identify that while collaboration can have enormous benefits, it is not without its challenges. In particular, funders identify the
following critical success factors:
• Develop a shared sense of purpose the earlier, the better –a sense of purpose that can be described as having a large win for
the country; included in the sense of purpose should be what the group effort will accomplish that couldn’t be done
individually. Establish ‘ambitious’ programs and don’t ‘smatter’ funds for the sake of pleasing everyone
• Fewer partners make the process easier
• Find partners with complementary or compatible operating styles
• Apply the funding in agreed value-added ways
• Establish clear accountability, role definition and shared ownership of the agenda
• Identify a lead partner who can help orchestrate the activities of the collaboration and bring cohesion to its activities
• Remember to evaluate, actively manage the risk and to celebrate results.
Following this introductory chapter, a comprehensive summary of research results is provided. Research priorities have been identified by
each of:
• Policy influencers
• Funding organizations
• Survivors
• Researchers, and
• International initiatives.
The approach used is to present some background on the data gathering process, including some detail on the methodology, and an
overview of the results. A summary table designed to capture the identified research priorities and organized by Common Scientific Outline
(CSO) category, is also provided in each section. One cross cutting summary is included, focusing on the gaps and changes required to the
current research system if this national research framework is to be implemented successfully.
Preceding this chapter is an Executive Summary and Summary Table. Both are critical documents. The data gathering findings are described
in the Summary in the simplest way possible. The summary table was developed based on an extensive review and analysis of all the
findings. It presents – by CSO code, within each of the CSO categories, the priorities identified across all stakeholder groups. Included in
the table are also examples of possible research questions, the related international priorities, and a listing of the current funding agencies
with a track record of investing in that specific CSO category.
Rounding out the contents of the binder is a list of definitions and some background material on CBCRA. Note that there is a tab for a
Participants’ Worksheets. These will be your roadmap to navigating the Summit and will be made available on site at the Summit.
Introduction
National Breast Cancer Research Summit | Key Findings | Results p 23
Mapping The Future
Introduction
The Board of Directors of the Canadian Breast Cancer Research Alliance decided last June to take the recommendation of an external
evaluation of the organization to explore the possibility of expanding the mandate of the CBCRA to go beyond funding of breast cancer
research to facilitating the development of a national breast cancer research framework. This prospect will be explored at a summit in
May 2008. In preparation for this summit, a series of background papers was produced which present various perspectives. This paper
represents the views of those who set or influence policy related to breast cancer. This perspective was obtained through interviews with
15 individuals who either make or influence policy related to various aspects of breast cancer treatment and management at the federal,
provincial, territorial and organizational levels. The individuals were identified by canvassing members of the breast cancer community
and asking for recommendations of people who together would comprise an appropriate functional and geographical profile. Limitations
to this data include the challenge of identifying the appropriate individuals in the different levels of government given that breast cancer
is no single policy maker or influencer’s entire portfolio. Further, once the appropriate people were identified, getting sufficient time on the
schedule of busy policy leaders was frequently challenging.
When asked about current priority activities in their jurisdiction, the participants mentioned a wide range of activities – from screening
to palliation. Taken in total, there was a clear emphasis on screening and clinical trials as the current priorities. Participants’ knowledge
of priorities within their own jurisdiction was usually restricted to one or two activities and they did not seem to have a full appreciation
of what was happening in other jurisdictions, with those involved in screening among the few exceptions. Participants were then asked
to make any observations related to breast cancer research in general that they might wish and to identify what they felt were important
issues related to the areas of screening, treatment/cure and prevention/palliation. Under each category, research questions were
identified.
As general observations, participants highlighted one overall priority and one concern. It seems that the search for priorities is an exercise
that is being repeated at other levels across Canada, such as the one currently underway in British Columbia. The question arises of how
to link the results of these exercises in a way which will maximize their utility to all levels of government and interested organizations.
Secondly, there is a broad consensus regarding the need to address the future, if it is not already current, shortage of health human
resources (HHR). Factors such as new technologies and expanded screening coverage are increasing demand for treatment and services
while factors at work on the supply side such as retirement, burn-out and outdated sourcing processes are hampering attempts to meet
those demands.
Research Questions:
1. What fundamental changes can be made to the current approaches to the detection, treatment and management of
breast cancer, and the funding thereof, in order to accelerate progress in its management and cure?
2. What are the current and forecast gaps in HHR related to detection, treatment and management of breast cancer?
What are the current sources of HHR? What strategies can be developed to fill those gaps? How can job stress best
be reduced?
Early Detection
Regarding screening, it was felt that the current collaborative model involving different levels of government and organizations has pro-
duced a number of benefits. The model has increased sharing of information and the development of standards for measures and targets.
But despite the fact that early detection remains a major policy priority across Canada, it was also made clear that more needs to be done.
The World Health Organization screening target of 70% has not been met consistently in any jurisdiction and the role of the family physi-
cian in advocating early detection has to be strengthened. There is also the need for the programs to be more flexible and to overcome the
“one size fits all” implementation approach. The “low hanging fruit” has been picked and the programs must be able to accommodate the
cultural, ethnic and geographical variation of Canada and find new ways of convincing and enabling women to participate in early detection
Research Questions:
1. What are the best communications strategies to educate family physicians about the realities of breast cancer and to encourage
them to pass those lessons on to their patients?
2. What are the most influential factors in determining whether a woman is screened? How do these change in various populations
and geographies (like the North)?
3. What are the different service models that would facilitate the delivery of screening services to women close to home?
4. How can we ensure that the most cost-effectiveness technologies, whether new or broadly established, are used?
5. What are the benefits and risk associated with genotyping?
Treatment /Cure
With respect to treatment and cure, participants felt that the research and methodologies surrounding clinical trials and clinical practice
guidelines are well established, especially given the exemplary work being done by the Clinical Trials Group of the National Cancer
Institute of Canada. Concerns arose, however, about the length of time required to go from research to practice and questions raised
about how the process could be expedited. This view was countered by the observation that, although analytical rigour is indeed time-
consuming, it is essential and cannot be compromised. It was felt that the translation of research was also operating well through
established processes, although the issue of maximizing the uptake of guidelines was raised. Wait times was also of key concern. Despite
the increased profile provided by federal initiatives in the area and the resulting increase in attention given wait times by the research com-
munities, there remain some basic questions about wait times. For example, at what point in time does waiting present a risk? What are
the emotional impacts on patients and families of waiting? It was felt that more collaboration is needed among the provinces to maximize
the exchange of information as was done in the case of screening.
Research Questions:
1. How can clinical trials and other studies and their translation be expedited in order to get new treatments and approaches into
practice as quickly as possible, while maintaining the rigour of the process?
2. How can the uptake of guidelines be maximized?
3. After what period of time and under what circumstances does waiting for treatment for various breast cancers become dangerous?
4. What are the physical and psychological impacts of waiting?
5. Are wait times a disease specific issue, requiring an appreciation of the characteristics of the disease or treatment; or is it a
system-wide issue that can be resolved by organizational change or additional funding?
6. What is the state of treatment assessment and research evaluation in Canada? What lessons can be learned from other jurisdic
tions? What would be the best strategy for developing assessment and evaluation protocols?
7. How must the current system change in order to incorporate molecular science into medicine?
8. What role should non-medical interventions such as homeopathic treatments play not only in treatment but also in
prevention and palliation?
Prevention/Palliation
There is an undeniable consensus that, when looking along the continuum, there is an imbalance between the level of research being
undertaken in areas such as clinical trials and screening and areas like prevention, psycho-social programming and palliation. A number of
reasons were cited for this – different methodologies, variation in time horizons of researchers and policy analysts, the much longer period
of time required to investigate prevention issues as compared to other types of research. In addition, the need was highlighted to correct
women’s misperceptions regarding environmental and lifestyle determinants of breast cancer as well as the basic facts related to early
detection and screening. Finally, the need for expanded research in the areas of prevention, psycho-social programming and palliation was
continually emphasized.
Research Questions:
1. What are the factors which impede research into prevention, psycho-social and palliation issues?
2. What are the key causes of breast cancer generally across the population and within certain cultural groups? What are the best
communications strategies for providing those populations with that information?
3. What population-based measures can be taken to reduce breast cancer incidence and increase screening?
4. Within an integrated population-based approach to reducing cancer or chronic disease, what niche activities related to breast
cancer specifically are still required?
5. What are the models of an integrated approach that covers the full spectrum of care?
The majority of policy influencers agree that there is a clear need for a coordinating body, as part of a national research strategy, to target
research to achieve better results. From a policy perspective, there is a need to ensure that researchers are more cognizant of policy
requirements both in terms of types of evidence needed as well as the time horizons which exist outside the research community. Some
interviewees felt that CBCRA and the Canadian Cancer Research Alliance have, to a certain extent, been able to fulfill that role - but
more needs to be done. For instance, while CBCRA is considered by some participants to have done a good job in encouraging interaction
between players, it was observed that “stovepipes” still remain and that researchers can be expected to “go by their heart and train-
ing”. Often academic researchers are out of the picture until a discovery is made which propels a disease or possible cure to the fore.
Suggestions were made regarding the need for “regularization and formalization” of interactions among policy influencers, researchers and
stakeholders.
A national strategy must be inclusive of participants from the whole breast cancer community – researchers, policy influencers, survivors
and patients. In fact, inclusion should go beyond the immediate breast cancer community to include non-single issue women’s groups
because all women are potential patients. In terms of the essential players, it was felt that there is a need for national level coordination
which possesses the “big picture perspective” - federal and provincial bodies like the Canadian Institutes of Health Research, the Public
Health Agency of Canada and provincial ministries – although not without their demerits - were mentioned in this regard. It was noted
that it is an advantage to have diversification and competition in the research funding field. It was also recognized that the Canadian
Partnership Against Cancer (CPAC) and the Canadian Association of Provincial Cancer Agencies have significant roles to play.
It was noted that a national strategy would best be lead by an organization which can achieve buy-in from all players; an organization
which is essentially non-aligned, national and based on consensus building. A science advisory committee would also be necessary,
composed of representatives from all segments of the community – screening, science, clinical, prevention, psycho-social and survivor.
It was continually noted that a direct benefit of the development of a breast cancer research strategy would be a process which brings
together all the actors – researchers, policy influencers, lawyers and ethicists. This process would promote a broad understanding of the
goals and obstacles related to each group and in turn foster an integrated approach to disease management research - from prevention
to screening to diagnosis to treatment to palliative care. Benefits would also arise indirectly from the establishment of a critical mass of
funding and HHR that can be directed toward established priorities. The refinement of goals would help identify gaps in the evidence and
duplication would be avoided.
A coordinating body is needed which has the “big picture perspective” and is national, non-aligned and inclusive to target research into
more cost-effective areas and to ensure that information is shared among jurisdictions.
There is a need for a comprehensive assessment process for all cancer treatments, including those related to breast cancer.
Research will continue to be a time-consuming process and the variation in time horizons among players will continue to cause frustration.
Research is needed to identify ways of minimizing that delay and frustration.
There is a significant gap in research related to prevention, psycho-social and palliation issues related to breast cancer as well as the
provision of health services – particularly critical is the rural/urban and cultural variation issues. Much more effort must be put into breast
cancer programs for First Nations and Inuit.
There is also the need for strategies to increase the awareness of breast cancers facts and encourage access to screening; evaluations of
existing strategies related to access and wait times; a translation component to provide a better understanding of the predictive factors for
breast cancer and large scale studies related to prevention.
Appendix
Dr. Pierre Band Senior Medical Epidemiologist Healthy Environments and Consumer Safety Branch, Health Canada
Marcia Campbell Program Coordinator Government of the North West Territory
Breast Cancer Screening, Yukon Region
Sheree Davis Director, Health Systems Strategy Division Ontario Ministry of Health and Long-term Care
Susan Fitzpatrick Executive Director Ontario Ministry of Health and Long-term Care
Negotiations and Accountability Management
Health Services Accountability and
Performance Division
Virginia Greene President, Business Council Former Chair, Canadian Breast Cancer Foundation Board
of British Columbia
Jean Kammermayer A/Director, Women’s Health and Health Canada
Gender Analysis Division
Kami Kandola Medical Health Officer Government of the Northwest Territories
Dr. Eshwar Kumar Co-Chief Executive Officer New Brunswick Cancer Network
Dr. Antoine Loutfi Directeur Direction de la lutte contre le cancer
Ministère de la Santé et des Services sociaux
Jay Onysko A/Manager, Screening and Early Detection Public Health Agency of Canada
Chronic Disease Management Division
Melanie Rathgeber Program Director Health Quality Council, Saskatchewan
Susan O’Reilly Vice President, Cancer Care British Columbia Cancer Agency
Faye Stark Nursing Consultant, Maternal and Government of the Northwest Territories
Child Health, Department of Health
and Social Services
Lianne Vardy Director, Chronic Disease Management Public Health Agency of Canada
Division
Dawn Walker Special Advisor, Strategic Policy, Planning First Nations and Inuit Health Branch, Health Canada
and Analysis Division
The full report on Policy Influencers’ Perspectives on Breast Cancer Research is available on the Canadian Breast Cancer Research Alliance
website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).
2. Etiology 2.1 Exogenous Factors in the Origin and 2.1/2.2 What are the key causes of
Cause of Cancer breast cancer generally across the
*Prevention population and within certain cul-
*Diagnosis tural and sub-population groups (for
example First Nations and Inuit)?
2.2 Endogenous Factors in the Origin 2.1/2.2 What are the key causes of
and Cause of Cancer breast cancer generally across the
population and within certain cul-
tural and sub-population groups (for
6. Cancer control, survivorship and 6.1 Patient care and survivorship 6.1 What are the physical and phyco-
outcomes issues logical impacts of waiting?
6.3 Behavior
6.4 Cost analyses and health care 6.4 What are the benefits and risk as-
delivery sociated with genotyping?
6.5 Education and communication 6.5 What are the best communications
strategies to educate family physicians
6.6 End-of-life care about the realities of breast cancer and
to encourage them to pass those lessons
6.7 Ethics and confidentiality in cancer on to their patients?
research
6.5 How can the uptake of guidelines be
6.8 Complementary and alternative maximized?
approaches for supportive care of
patients and survivors 6.5 What are the best communications
strategies for providing sub- populations
6.9 Resources and infrastructure with relevant information?
related to cancer control, survivorship
and outcomes research 6.7 What are the ethical issues associ-
ated with genotyping?
² Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.
³ The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.
Data has been provided by the Canadian Cancer Research Alliance (CCRA). More in-depth analysis is available for the funding year 2005
with more high level comparators only being available for 2006. While there was a significant increase in the number of funding organiza-
tions contributing data to the 2006 survey, data from some key organizations is missing (see comments at end of document).
Based on this data, breast cancer remains the most highly funded of all cancer sites, but represents a smaller percentage of the total pot
(12% as opposed to 15%).
(1) In 2005, data for the survey were contributed by CCRA members and affiliated organizations only.
(2) In 2006, 14 additional organizations (including Canada Research Chairs, Canada Foundation for Innovation, Stem Cells Network and
Networks of Centres of Excellence) contributed data to the survey, in addition to the CCRA members and affiliated organizations.
Genome Canada is now a CCRA member.
In terms of trends over the last four years, Figure 1 suggests that breast cancer research funding has increased at a faster rate compared
to other sites. Also showing growth is research funding for brain and prostate cancer – but particularly with prostate, the data may be
misleading given the inclusion of additional data sources in 2006.
$ 4 5 ,0 0 0 ,0 0 0
$ 4 0 ,0 0 0 ,0 0 0
$ 3 5 ,0 0 0 ,0 0 0
$ 3 0 ,0 0 0 ,0 0 0
$ 2 5 ,0 0 0 ,0 0 0
$ 2 0 ,0 0 0 ,0 0 0
$ 1 5 ,0 0 0 ,0 0 0
$ 1 0 ,0 0 0 ,0 0 0
$ 5 ,0 0 0 ,0 0 0
$-
B r a in B re a s t C o lo r e c t a l L e u k e m ia Lung P ro s t a t e O th e r
* This chart was obtained from Kim Badovinac, Manager, Canadian Cancer Research Survey, Canadian Partnership Against Cancer.
Table 2 categorizes the research investment by CCRA members and affiliated organizations in each of the CSO categories. Only CBCRA
(Total: $8,824,242) and the Alberta Cancer Board (Total: $275,874) fund across the full spectrum of breast cancer research.
Table 2: Breakdown by CSO Category – 2005 Data
Table 3 categorizes the investment by type of grant. The preponderance of operating grants becomes obvious when analyzed in this way.
Table 3: Breakdown by Grants Types - 2005 Data
Research
related Salary Trainee
Equipment/Infrastructure Operating Grants support support research
ACB
AHFMR
BCCA
CCMB
FCSQ
FRSQ
MSFHR
OICR
SCA
CBCF
CBCRA*
CCS-NCIC
CIHR
CTCRI
NCIC-TFF
CRS
* All research grants funded by CBCRA are classified as operating grants in the CCRA database, including CBCRA’s Strategic Initiatives
grants.
For more information, please consult the list of definitions and acronyms in the final section of your binder.
The largest groups of funding organizations remaining outside of the CCRA database are the provincial cancer foundations and hospital
foundations1. While specifics are not available, there are some broad data points to inform the discussion:
• Revenue within hospital foundations has been growing at a significant pace, especially in Alberta and Nova Scotia. Overall
revenue had increased 86% in 2006 from numbers recorded in 2001
• Ontario represents 68% of all giving to hospital foundations, with 40% of all funds being raised in Toronto with the largest
foundations being Princess Margaret Hospital Foundation and the Hospital for Sick Children Foundation
• Hospital Foundations are experiencing significant increases in their cost of fundraising given the competitive marketplace for
professional fundraisers the overall expansion of fundraising programs; the greater investment in marketing and communica-
tions, and new spending on donor relations in an effort to retain donors and promote a philanthropic culture
• There is little information available as to how these funds are spent
• The Weekend to End Breast Cancer appears to be growing its revenue in Canada. However, Winnipeg has decided not to hold
an event in 2008. Data presented in Table 4 reflects gross amounts. No disclosure is made as to net versus gross receipts, or
what the split is between funding of breast cancer care initiatives and breast cancer research.
Table 4: Funds raised in 2007 by Provincial Cancer Foundations and Hospital Foundations through Weekend to End Breast
Cancer Walks
Some preliminary figures are presented below to provide guidance to Summit participants as to the cost associated with different funding
vehicles. Input from leaders of research funding organizations suggests the following ballpark figures:
Operating grants (e.g., CBCRA, NCIC, CIHR, CBCF) Generally between $300 K and $1.5 M depending on the length (2-5 years)
of the grants and the area of research (epidemiology grants have higher
ceilings, fundamental science grants have lower ceilings).
Team grants Generally between $1 M and $ 1.5 M per year for up to 5 years.
Clinical trials Amount varies widely. Generally clinical trials cost between $3 K and
$4 K per patient. However, with new expensive drugs, the cost can be up
to $20 K-$30 K per patient.
Cohort studies The Ontario Institute for Cancer Research has budgeted $20 M over 5
years for their cohort study.
1
Data from report: Trends in Hospital Fundraising and Expenditures (2001-2006) the Offord Group, Inc and Innovative Research Group, Inc.
April 2008
Introduction
In preparation for a National Summit on Breast Cancer Research, in Toronto on May 26 and 27, 2008, the Canadian Breast Cancer Research
Alliance undertook a multi-pronged process to conduct research, and gather perspectives and opinions concerning key issues in breast
cancer research today.
This report presents the findings from a survey of organizations that fund breast cancer research in Canada as well as more in-depth
interviews with representatives of a small number of these same organizations. The results represent the collective views of 13 targeted
key informant interviews and twenty (approximately 35%) of a potential 58 breast cancer research funding organizations that completed an
on-line survey.
By design, the online survey and in-depth interviews were complementary to each other, thereby allowing for more meaningful input and
to elicit a deeper understanding of issues and perspectives from agencies that fund breast cancer research. The broader themes consistent
across the two data sources, and the subject of an integrated analysis were: (a) Research Priorities and Perspectives; (b) Funder Collabora-
tion; (c) System Gaps and (d) a National Breast Cancer Research Strategy.
The fact that most of the broad research areas were identified as current priorities suggests that the identification of one overall research
priority could be challenging within a national research framework. Perhaps more exploration within the sub themes of a category is war-
ranted in further defining research priorities within a national research framework.
Prioritizing Previously Identified Priorities: Survey participants were also asked to rate the relative importance of nineteen breast cancer
research priorities that had been previously identified by CBCRA through a broad consultation with the research community in 20061. They
were also asked to identify the areas they considered to be most important from this list. The topic areas that emerged were: biomark-
ers, the early detection of metastatic disease and knowledge translation processes. Lifestyle influences on breast cancer, breast cancer
subtypes and screening tools for high risk women were all equally rated as the next areas of importance. Overall, biomarkers received the
highest number of selections as the ‘most important’.
Emerging Priorities: Options regarding “emerging” topic areas for breast cancer research also provide insight into potential priority areas
for consideration in national planning activities. Although opinions were quite varied, the following areas yielded some common ground
across participants: cancer genetics; environmental risk factors; metastasis-related research, translational research, and a more holistic,
life course perspective as an organizing research framework. Some of these opinions on emerging research converge with the ratings of
relative importance of various topics (e.g. metastasis and translational research). Going forward, it will be important to triangulate these
findings, and other opinions summarized in this report from individual respondents, with other sources of information being brought to bear
at the Summit.
1
See report in Summary of Canadian Breast Cancer Researcher Priorities
Funder Collaboration
Most respondents to the survey (80%), and approximately half of those interviewed, reported some history of collaborative work with other
funders. There is, therefore, an established base of experience among funding organization who may wish to explore the potential for in-
creased collaboration. Lessons learned from previous collaborative work would include the need to work from a clearly stated and common
goal; engage a limited number of partners and those with similar operating values; and be very clear with respect to level of commitment,
roles and responsibilities. There were also strong opinions expressed about the importance of a “shared sense of purpose”, similar operat-
ing values as well as the need to be define the “value-add” in working more strategically together.
Although the enthusiasm for collaboration was reasonably high (caveats and cautions aside), the current level of collaboration on the top
organizational priorities was markedly low. The most frequently cited areas for collaboration included translational research and preven-
tion. The data gathered suggests underlying factors such as the ability to find the right partner with similar priorities or that collaboration
was not a preferred way of doing business may explain the relatively low level of current collaboration on those topics of highest priority in
each organization. A more formalized national network may assist in linking organizations together with a mutual interest in addressing an
identified research priority area.
System Gaps
The major gaps identified in the current breast cancer research system in Canada included: the need for funding to new multidisciplinary
teams (clinicians/basic researchers), more team grants for long term sustainable programs and renewable grants to enable support of long
term studies. Other gaps and needs that came to the fore were the critical shortage of physician/clinician scientists, the need for more
strategic and integrated partnerships, and the need for leadership generally in order to fully realize Canadian potential.
Conclusion
This project has successfully garnered feedback on breast cancer research priorities, research collaboration, system gaps and other issues
of relevance for a potential national research framework, from the perspective of research funding organizations in Canada. It is instructive
to conclude with some observations from this project that may help identify areas of strengths going forward, and possible challenges to
be addressed in the development of a national breast cancer research framework.
Strengths:
• There is strong support for developing a national breast cancer research strategy in Canada, with careful consideration to be
given to its essential purpose, value-add and many other operational issues that would need to be worked out.
• There is previous history of collaboration by many key players and open acknowledgement of lessons learned on critical
success factors and key processes.
• Although more resources can be put to good use for breast cancer research, Canada does have a solid funding base upon
which to build a more strategically development research agenda.
• Canada also clearly has a cadre of excellent and internationally renowned researchers working in the area of breast cancer.
Existing national and international relationships will be key to fitting an emergent Canadian research agenda into an
international context.
Potential Challenges:
• There is a need for additional physician/clinician scientists in Canada that are doing breast cancer research. This would, for
example, increase the quantity of translational research, moving the research findings to the patient level.
• Other system gaps that have been identified, such as the need for larger team grants with integrated teams and longer-term
funding, would require not only a significant amount of collaboration but also a significant funding investment.
• It is possible that too much continued focus on breast cancer, outside of the broader field of cancer research, will have some
negative consequences for scientific advancements that are important for breast cancer (knowledge and methods).
• The variation in scope and priorities within the national versus provincial/territorial funding contexts may present challenges.
A small number of key informants mentioned issues related to provincial differences (e.g., smaller provinces challenged to fit
their priorities and their funding dollars into larger-scale initiatives).
• The diversity among the funding bodies may present a challenge. For example, some distribute funds and their recipients
decide what research to support, compared to other organizations that more directly support individual topics and studies.
• Role clarity is an identified pre-requisite for successful collaboration. Examples of such issues for clarity include: who
participates, what is the process for inclusion, which organization/s leads, in the development of a national research frame
work; do participants speak as individuals or as organizational representatives with decision-making authority; and the role of
the CBCRA as a possible coordinator versus a ‘voting member”.
• There may be “turf” issues in general that will require objective leadership and clear terms of reference.
• Limited attention was given to ensuring an evaluation system is in place for assessing the effectiveness of a potential national
framework. This stands in contrast to the salience attached to clear goals, accountability and a value-add perspective on more
collaborative work.
The full report on Breast Cancer Research Priorities: A survey of organizations funding breast cancer research in Canada and
related key informant interviews is available on the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click
on National Breast Cancer Research Summit).
Appendix
Those responding to the survey were given the opportunity to identify themselves. Fifteen of the 18 did so, as follows:
National Organizations
• Canadian Institutes of Health Research (CIHR)
• NCIC
Provincial Organizations
• Nova Scotia Health Research Foundation
• Ontario Ministry of Research and Innovation
• Saskatchewan Health Research Foundation
• Fonds de la Recherche en Santé du Québec
Cancer Care Agencies
• Cancer Care Program, Eastern Health
• Saskatchewan Cancer Agency
Research Institutes
• Segal Cancer Centre-Jewish General Hospital
• Ontario Institute for Cancer Research
National Organizations
Dr. Joy Johnson Scientific Director Canadian Institutes of Health Research – Institute of Gender and Health
Dr. Heather Bryant Vice–President, Cancer Control Canadian Partnership Against Cancer
Ms. Jessica Hill CEO Canadian Partnership Against Cancer
Research Institutes
Dr. Tak Mak Director Campbell Family Institute for Breast Cancer Research
Dr. Anne Marie Mes-Masson Centre de recherche CHUM Institut du cancer de Montréal, Hôpital Notre-Dame
Dr. Elizabeth Eisenhauser Director, Investigational New Queens University
Drug Program, NCIC Clinical
Trials Group
Dr. Victor Ling Scientific Director Terry Fox Research Institute
CSO Category (1) and Funding organizations’ perspectives on breast cancer research priorities
corresponding Cancer Care % rating priority as very important; [x] overall rating in importance;
Continuum categories (2) CSO Code (3) self-identified current and emerging priorities
7. Scientific model systems 7.1 Development and characterization of model system 7.1 Animal models of breast cancer progression (#6) – 22.2%
*Prevention
*Diagnosis
*Treatment 7.2 Applications of model systems
7.3 Resources and infrastructure related to scientific model
systems
2. Etiology
2.1 Exogenous Factors in the Origin and Cause of Cancer 2.1/2.3 Exposure to risk factors (#18) – 27.8%
*Prevention 2.2 Endogenous Factors in the Origin and Cause of Cancer
*Diagnosis
2.3 Interactions of genes and/or genetic polymorphisms with 2.1/2.3 Exposure to risk factors (#18) – 27.8%
exogenous and/or endogenous factors CSO Code³
2.4 Resources and Infrastructure related to etiology
Genomics
Emerging Priority
CSO Category (1) and Funding organizations’ perspectives on breast cancer research priorities
corresponding Cancer Care % rating priority as very important; [x] overall rating in importance;
Continuum categories (2) CSO Code (3) self-identified current and emerging priorities
3. Prevention 3.1 Interventions to prevent cancer: personal behaviours that 3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2%
affect cancer risk 3.1 Lifestyle influence on breast cancer (#15) – 27.8%
*Prevention 3.1 Exposure to risk factors
*Treatment (#18) – 27.8%
3.2 Nutritional science in cancer prevention 3.1/3.2 Lifestyle changes in subpopulations (#3) – 22.2%
3.3 Chemoprevention 3.3 Clinical prevention trials in high risk women (#17) – 27.8%
Policy Influencers’
3.4 Vaccines Perspectives on
3.5 Complementary and Alternative Prevention Approaches Breast Cancer Research
3.6 Resources and Infrastructure related to prevention
4.1 Technology development and/or marker discovery 4.1/4.2 Biomarkers (#1) 55.6% [1]
4. Early detection, diagnosis and
4.1 Breast cancer subtypes (#2) – 33.3%
prognosis
4.1 Breast cancer heterogeneity (#8) – 16.7%
*Screening
*Treatment
4.2 Technology and/or marker evaluation with respect to 4.1/4.2 Biomarkers (#1) 55.6% [1]
*Diagnosis
fundamental parameters of method 4.2 Lifestyle influence on breast cancer (#15) – 27.8%
4.3 Technology and/or marker testing inCSO Code³
a clinical setting 4.3 Screening tools for high risk women (#4) – 33.3%
4.4 Resources and infrastructure related to detection, 4.4 Molecular pathology platforms (#16) – 38.9%
diagnosis or prognosis
CSO Category (1) and Funding organizations’ perspectives on breast cancer research priorities
corresponding Cancer Care % rating priority as very important; [x] overall rating in importance;
Continuum categories (2) CSO Code (3) self-identified current and emerging priorities
5. Treatment 5.1 Localized therapies: discovery and development 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]
5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%
*Treatment
5.2 Localized therapies: clinical applications 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]
5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%
5.3 Systemic therapies: discovery and development 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]
5.1/5.2/5.3/5.4 Breast cancer subtypes (#2) – 33.3%
5.4 Systemic therapies: clinical applications 5.1-5.5 Microenvironment of metastatic breast cancer (#9) – 33.3% [3]
5.4/5.7 Phase I and II intervention trials (#14) – 38.9%
Policy
5.1/5.2/5.3/5.4 BreastInfluencers’
cancer subtypes (#2) – 33.3%
Perspectives on
5.5 Combinations of localized and systemic therapies Breast Cancer
5.1-5.5 Microenvironment Research
of metastatic breast cancer (#9) – 33.3% [3]
5.7 Resources and infrastructure related to treatment 5.4/5.7 Phase I and II intervention trials (#14) – 38.9%
6. Cancer control, survivorship and 6.1 Patient care and survivorship issues 6 (all) KT of intervention (#7) – 38.9% [2]
outcomes 6.1 Health care delivery (#10) 33.3% [3]
6.1 Survivorship interventions (#12) – 16.7%
*Supportive care
*Palliative care 6.2 Surveillance 6 (all) KT of intervention (#7) – 38.9% [2]
CSO Code³
And across complete CCC for codes 6.3 Behavior 6 (all) KT of intervention (#7) – 38.9% [2]
6.4 and 6.5 6 (all) KT of intervention (#7) – 38.9% [2]
6.4 KT processes (#13) -33.3%
6.4 Cost analyses and health care delivery 6.4/6.5/6.7 Inequities (#11) – 11.1%
6 (all) KT of intervention (#7) – 38.9% [2]
CSO Category (1) and Funding organizations’ perspectives on breast cancer research priorities
corresponding Cancer Care % rating priority as very important; [x] overall rating in importance;
Continuum categories (2) CSO Code (3) self-identified current and emerging priorities
6.7 Ethics and confidentiality in cancer research 6 (all) KT of intervention (#7) – 38.9% [2]
6.4/6.5/6.7 Inequities (#11) – 11.1%
6.8 Complementary and alternative approaches for support- 6 (all) KT of intervention (#7) – 38.9% [2]
ive care of patients and survivors
CSO Code³
1 The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp).
2 The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.
3 Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.
4 The following 19 Strategic Research Priorities were identified at CBCRA December 1-2, 2006 Strategic Research Agenda Workshop (SRAW). In the table above, the number in parenthesis indicated the ranking of the priority.
1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and predict progression
2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across populations
3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo influence their breast cancer risk
4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to identify women with high risk
5- “EARLY DETECTION OF METASTATIS DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent
6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression
7- “KT INTERVENTIONS”: Knowledge transfer: Increase knowledge about interventions, what works, what doesn’t, studies of uptake and effectiveness on the interventions where evidence exists
8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of disease; large in scale
9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its microenvironment
10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do?
11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed which are tailored to different populations, ethical quality indicators
12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions
13- “KT PROCESSES”: What are the best Knowledge Translation processes in different settings, in order to influence practices, policies?
14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention
15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and effectiveness of therapy at the molecular level?
16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups, infrastructure to support large scale molecular pathology platform
17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women
18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies
19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?
Introduction
The Canadian Breast Cancer Research Alliance (CBCRA) is convening a National Summit in Toronto on May 26 and 27, 2008. In preparation,
the CBCRA undertook a multi-pronged process to conduct research and gather perspectives and opinions concerning key issues in breast
cancer today, including a survey aimed getting the opinions of breast cancer survivors, family members/loved ones and others involved in
breast cancer area (e.g., caregivers, health professionals, volunteers). This report presents the findings from this survey.
Methods
A web-based survey questionnaire was designed based on the identified needs for information (e.g., coverage of topics; level of detail
required), and relevant literature/reports on breast cancer research and needs of survivors and family members. Input was provided into the
questionnaire from multiple perspectives including researchers, breast cancer survivors, family members, and executives of breast cancer
stakeholder organizations. Following a pilot test and a professional “plain language” review the questionnaire was posted for Internet
access. The survey was available in both English and French. The web links to the survey advertised/promoted by eleven breast cancer or-
ganizations across Canada. The survey site was open for a total of 20 days and 808 individuals entered the site and completed the survey
in its entirety.
The survey was successful in capturing a diverse group of people in terms of age, geographic representation across Canada, and experi-
ences related to breast cancer. It is important to note, however, that the survey was not designed to randomly sample breast cancer
survivors and others affected by breast cancer. Importantly, the final sample is comprised of a group of breast cancer survivors of younger
age than is the norm in the population – as reflected in both the large percentage who are pre-menopausal and the relatively short duration
since initial diagnosis. Caution must therefore be exercised in generalizing the findings to all breast cancer survivors and others affected by
breast cancer living in the community in Canada.
Results
(i) What is the perceived importance of the main topic areas for breast cancer research?
The three categories of “treatment”, “screening” and “risk/factors/prevention” were rated highest by respondents, followed by lab
research. The two categories of “supportive care and quality of life” and “health systems and health services”, received lower points, on
average. These are relative ratings of perceived importance and not an indicator of absolute importance to participants.
(ii) Are the demographic characteristics of the respondent associated with the perceived importance of major categories of
breast cancer research?
• There were no difference according to the age category of the respondent;
• English language respondents gave higher ratings to “risk factors and how to prevent breast cancer” compared to their French
language counterparts who gave higher ratings to “breast cancer treatment”;
• There was also a statistically significant regional difference that reflected lower ratings on average for Quebec for “risk factors
and how to prevent breast cancer” and correspondingly higher ratings for “breast cancer treatment”.
(iii) Is the respondent’s experience with breast cancer associated with the perceived importance of major categories of breast
cancer research?
• Survivors and Family Members gave higher average ratings to “breast cancer treatment”;
• The Survivor group gave slightly lower ratings to “health systems/services”;
• Participants who had experienced their initial diagnosis of breast cancer less than two years ago gave higher rating to “breast
cancer treatment” compared to women with longer histories;
• Women who had been diagnosed before menopause gave lower ratings on average to “screening for breast cancer” and
higher rating for “breast cancer treatment” compared to women diagnosed after menopause;
• There were no differences in the average ratings given to each type of research for women who had been diagnosed a second
time; the length of time since second diagnosis, or whether the woman had experienced metastatic breast cancer.
Early detection:
• Finding new ways to ensure that cancer that spreads to other parts of the body (metastatic breast cancer) is found early
• Finding better ways to screen for breast cancer that would improve on mammography
• Finding ways to detect breast cancer that cause less discomfort for women and give clearer results
(v) What topic areas for breast cancer research did respondents identify as being important?
Survey participants were offered the opportunity to identify additional topics they felt were not adequately covered in the survey ques-
tions. They also responded to an open-ended question at the conclusion of the survey asking for any additional input they would like
to provide to improve breast cancer research in Canada. These qualitative data were coded into the broad categories of breast cancer
research with the responses falling into the two broad categories of “health services/health systems” and “supportive care/quality of
life” being mentioned the most frequently. More detailed coding yielded the following highlights in terms of specific topic areas of high
importance for participants.
Highlights of the feedback concerning breast cancer research and research funding included:
• the need for more funding or more research in general
• investing more directly in research and treatment and minimizing administration/overhead/big salaries
• more coordination of research (e.g., sharing info across teams; more centres of excellence and less small/territorial research
and pools of money; building upon and not duplicating international work).
Conclusions:
Several study limitations must be considered in interpreting the findings from this survey. These include:
• The younger age and larger proportion of women with pre-menopausal breast cancer than would have been expected. How
ever, there were no age difference in quantitative results obtained and few differences based on number of years since initial
diagnosis or pre- versus post-menopausal histories. Thus, it is not clear whether the results of the survey would have been
substantively different with a more representative sample.
• Sub-topics rated by respondents within each of the broad categories of breast cancer research did not capture the rich and
varied spectrum of research within these areas. This is important to keep in mind when comparing these findings with
priorities identified by other data collection strategies and perspectives (e.g., funders).
• The inter-relationship across the many coded categories is not evident in the way the data are coded and displayed. Examples
of this inter-connectivity are concerns about the availability of MRI and related issues about the limitations of mammograms;
and financial barriers in the health system and mental and emotional stress about financial consequences of a breast cancer
diagnosis supports needed in that area.
• The challenge in the interpretation of the findings with respect to lab/basic research is also acknowledged. When asked to
rate topics in relative terms it is likely that the respondents gave higher ratings to things they felt were closer to their
own experience, thereby scoring the domains of prevention, screening and treatment higher. Respondents may have been
challenged to make the connection between lab/basic research and the more familiar domains of prevention, screening and/or
treatment. Certainly the results do not diminish the importance of this work in the breast cancer area.
Balanced approach: It is interesting that the three categories of research that were given the most points on average in terms of impor-
tance covered the spectrum of treatment, screening and prevention. This would support a balanced funding portfolio across this spectrum.
Priorities across the broad areas of research: Although research studies on breast cancer report many important issues related to
health services for breast cancer (e.g., lack of coordination/communication across providers) as well as supportive care and quality of life
(e.g., need for psychosocial supports), on the whole, these two categories scored lower than the others. For the majority of respondents,
prevention, screening and treatment might be viewed as the “need to know”, whereas health systems and supportive care might be seen
as less critical in terms of overall impact.
The above notwithstanding, the issues of supportive care/quality of life and health services/systems clearly came to the fore in the qualita-
tive data. This reinforces their importance and salience for the respondents even though in relative terms the other areas may be more
important. For reasons identified above, the results do not speak clearly to the relative importance of lab/basic research which is consid-
ered foundational to much of the work in the breast cancer area.
Health systems/services: There were many salient issues brought forward with respect to the health care system, including issues of
waiting time; coordination/integration; financial barriers; supply of qualified people; wide variation in protocols and quality of services; sig-
nificant challenges in rural/remote areas many issues focused on the knowledge; and communication skills of physicians and other profes-
sionals working with women going through the trauma of the diagnostic and treatment experience. It is anticipated that the results of this
survey and other information collected for the National Summit will be cross-referenced to the categories of research used in the Common
Scientific Outline (CSO). Since health systems/services research topics are subsumed under other broad categories (mostly “cancer control,
survivorship and outcomes”) it will be important to ensure that the many issues related relevant for a health systems research agenda do
not get lost in the translation process.
• The broad topic of breast cancer and younger women was very important to a high percentage of respondents and several
sub-issues were identified within the categories of prevention, screening, treatment, supportive care, and health services/systems.
• The importance of research on metastatic cancer also cut across several areas.
• The issue of psychosocial and other supports needed before, during and after treatment is seen as critically important.
• More research into environmental causes and risk factors was seen as extremely important.
• More research seen as needed concerning a wide range of alternative and complementary treatment approaches.
With respect to breast cancer research and research funding, participants voiced their appreciation for work done to date but many also
expressed the need for more collaboration and sharing of information among researchers. A small but notable minority also voiced concern
about the slow progress on many important issues and the need to focus research efforts.
The full report on Breast Cancer Research Priorities: A Survey of Survivors and Others Involved in Breast Cancer is available on
the Canadian Breast Cancer Research Alliance website at www.breast.cancer.ca (click on National Breast Cancer Research Summit).
1.4 Cancer progression and 1.4 Finding new ways to ensure that
metastasis cancer that spreads to other parts of
the body (metastatic breast cancer) is
found early
2. Etiology 2.1 Exogenous Factors in the Origin and 2.1 How the food we eat and body
Cause of Cancer weight relate to the risk of breast
*Prevention cancer?
*Diagnosis 2.1 Research into the effects of food
and exercise on how breast cancer
develops
2.1/2.2/2.3 Why is breast cancer
among young women/pre-menopausal
increasing?
3.3 Chemoprevention
3.4 Vaccines
4. Early detection, diagnosis and 4.1 Technology development and/or 4.1 Research into triple negative breast
prognosis marker discovery cancer
4.3 Technology and/or marker 4.3 Finding better ways to screen for
testing in a clinical setting breast cancer that would improve on
mammography
5. Treatment 5.1 Localized therapies: discovery and 5.1-5.5 Research on the treatments for
development cancer that spreads to other parts of
*Treatment the body (metastatic breast cancer)
5.3 Systemic therapies: discovery and 5.1-5.5 Research on the treatments for
5. Treatment (cont) development cancer that spreads to other parts of
the body (metastatic breast cancer)
*Treatment
5.3/5.4 Research on hormonal therapy
(such as tamoxifen)
6. Cancer control, survivorship and 6.1 Patient care and survivorship issues 6.1 Research on more aftercare /post-
outcomes discharge support/physio referral, brief
follow up even after five year mark
*Supportive care
*Palliative care 6.1 Research on ways to manage pain
And across complete CCC for codes 6.1 Research on ways to reduce pain
6.4 and 6.5 and swelling in the treated area (after
cancer treatments or surgery)
6.2 Surveillance
6.3 Behavior
6. Cancer control, survivorship and 6.4 Cost analyses and health care 6.4 Research on issues in smaller or
outcomes (cont) delivery isolated communities (second opinion,
waiting time, lack of personnel, out-
*Supportive care dated equipment)
*Palliative care
6.4 Research into plans and policies
And across complete CCC for codes that will ensure there are enough
6.4 and 6.5 trained health care professionals for
treatment and support
6.5 Education and communication 6.5 Need for more education of young
women/pre-menopausal about breast
cancer
¹ The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research
(www.cancerportfolio.org/cso.jsp).
² The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.
³ Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details.
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community
stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has
undertaken and documented a number of data gathering activities including two specific initiatives designed to determine breast cancer
research priorities, one hosted by CBCRA in December 2006 and the other hosted by NCIC in May 2007.
2- Overview of Findings
Somewhat similar approaches were taken in each case: attempting to define the state of knowledge and important considerations and then
bringing together a group of wise individuals to determine priorities. Details of the methodology and limitations of both studies, together
with the results are included below. The results have also been re-classified according to the Common Scientific Outline (a classification
system organized around seven broad areas of scientific interest in cancer research, developed by the International Cancer Research Portfo-
lio, a joint initiative of International Cancer Research Funding Organizations) and are displayed in the attached summary table.
Methodology
In preparation for the workshop, CBCRA’s Research Advisory Committee members and other experts in specific areas of breast cancer
research were asked to prepare summary documents describing the “State of the Union” in breast cancer research in each of eight key
areas. The workshop began with two keynote addresses on the current state of breast cancer research and the accomplishments of CBCRA
since its inception in 1993.
In the first half of the workshop, participants were divided into discipline-specific groups and tasked with identifying (1) the key opportuni-
ties, barriers and gaps to be considered by CBCRA in developing its future research agenda and (2) the key research themes that should be
addressed by research in the future.
In the second half of the workshop, participants were divided into interdisciplinary groups and asked to refine the research priorities identi-
fied above and to present a short list of five priorities to all participants, who then designated their top three priorities by vote. This process
led to the identification and ranking of 19 future research priorities, listed below.
Although every attempt was made to include participants from all areas of breast cancer research in addition to breast cancer stakeholder
and survivors, the findings obtained are a direct reflection of the areas of expertise of the individuals who participated, and a different
group of participants might have led to slightly different results.
Results:
The following 19 Strategic Research Priorities were identified during the Strategic Research Agenda Workshop (SRAW):
1- Biomarkers Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and
to understand and predict progression
2- Breast Cancer Subtypes Better appreciation of the functional meaning of breast cancer subtypes and implications for
treatment across populations
3- Lifestyle Changes In Look at particular subpopulations and how the lifestyle changes that they undergo influence their
Subpopulations breast cancer risk
4- Screening Tools For High Development of sensitive, specific, accessible, cost effective screening tools to identify women
Risk Women with high risk
5- Early Detection Of Metastatic Early detection of metastatic disease, if oligometastatic disease is treatable with curative intent
Disease
The complete proceedings of this workshop are posted on the CBCRA website.
ii] The National Cancer Institute of Canada (NCIC): Breast Cancer Research Summit May 2007
NCIC’s strategic plan, approved in June 2005, requires the organization to periodically review its research portfolios to determine future
directions and priorities. As part of such a review of its breast cancer research portfolio, a series of key informant interviews were con-
ducted together with a two-day meeting in early, 2007. Limitations to the findings include the recognition that in the timeframe in which
the process was conducted, the appropriately broad and representative cross-section of the breast cancer researcher community was not
available. Some participants were both interviewed and participated in the meeting – and no attempt was made to control the weighting
of their data in the final analysis. Finally, within the meeting, the small group discussions were very different, resulting in concerns that
perhaps the understanding of the exercise was not shared.
Methodology:
Participants in both the key informant interviews and the research summit were chosen for their ability to represent different aspects or
components of the breast cancer research community: breast cancer areas, clinical settings, policy/advocacy arenas and survivors.
A total of 31 structured phone interviews were conducted with a purposeful sample of researchers, clinicians, policy makers, survivors and
funders. The interviews consisted of six open-ended questions designed to identify directions in breast cancer research over the next 10-15
years as well as current opportunities and/or barriers. The same two interviewers created a coding framework, refined through several
iterations and then one interviewer coded all the interviews and summarized the themes identified by interview question and by major
coding framework theme.
The summit, attended by 22 participants, began with a series of presentations designed to provide background information and context
to seed the discussions. The presentations provided context for breast cancer research funding in Canada as well as an example of how
a California breast cancer research funding agency had identified its strategic focus. Roundtable discussions were then held to identify
research breakthroughs, barriers and the ‘low hanging’ fruit that, if funded, would lead to rapid results.
Conversations at the Summit were analyzed, and then findings compared and contrasted with those of the key informant interviews.
Results:
The following three clusters of priorities emerged as being of importance to both key informants and summit participants. A fourth generic
cluster has also been created to capture miscellaneous common areas of concern/importance:
1- Prevention
1.1 Behavioural interventions to reduce risk
1.2 Pharmaco-prevention
1.3 Studies on the role of the environment
2- Early detection and treatment
2.1 Targeted therapies: smaller populations for treatment sparing and reduced toxicity
2.2 Tailored or combination therapies for treatment sparing and reduced toxicity
2.3 Advances in basic research (understanding genetic interactions and biological pathways and the identification of biomarkers)
were described as key to developments in detection, diagnosis and treatment
2.4 Molecular specificity and functionality : knowing if cancer exists, the behaviour pattern of the tumour, and what therapies, if
any, are required
2.5 Screening tools and process: diagnostic sparing. Two tier to identify high risk candidates first/approach to triage
3- Survivorship
3.1 Evidence-based holistic support to encompass whole individuals based on evidence (integrating psychosocial, financial,
treatment, etc)
3.2 Post-treatment complications, both medical and non-medical. Managing long term morbidity.
3.3 Improved understanding of tumour dormancy
3.4 Identification of support required at time of diagnosis, during and after treatment and long term, i.e. across the spectrum.
4- Other
4.1 Breast cancer modeling
4.2 Molecular imaging
4.3 Target marginalized and subpopulations for prevention, detection and treatment
4.4 Exploit Canadian resources e.g. tumour banks, correlative studies. Coordinate databases and making them more accessible.
4.5 Need to make the clinical trial system more effective and faster, e.g. by creating a central ethics board, blending Phases I
and II, blending Phases III and IV, increasing enrolment, modernizing collection of tissue and blood, providing support to cor
relative studies.
4.6 Move beyond descriptive Quality of Life studies and undertake intervention research
4.7 Uptake and translation from laboratory to clinic
1.4 Cancer progression and 1.4 Early Detection of 1.4 Tumor dormancy
metastasis Metastasis Disease (#5)
7. Scientific model systems 7.1 Development and 7.1 Animal models of breast 7.1 Breast cancer modeling
characterization of model system cancer progression (#6)
*Prevention
*Diagnosis 7.2 Applications of model systems
*Treatment
7.3 Resources and infrastructure 7.3 Translation lab-clinic
related to scientific model systems
2. Etiology 2.1 Exogenous Factors in the Origin 2.1/2.3 Exposure to risk factors 2.1 Environmental/
and Cause of Cancer (#18) occupational exposure
*Prevention
*Diagnosis 2.2 Endogenous Factors in the
Origin and Cause of Cancer
4. Early detection, diagnosis 4.1 Technology development and/or 4.1/4.2 Biomarkers (#1) 4.1 Targeted and tailored therapies
and prognosis marker discovery
4.1 Breast cancer subtypes (#2) 4.1/4.2/4.3 Advances in basic
*Prevention research
*Diagnosis 4.1 Breast cancer heterogeneity
*Treatment (#8)
4.2 Technology and/or marker 4.1/4.2 Biomarkers (#1) 4.1/4.2/4.3 Advances in basic
evaluation with respect to research
fundamental parameters of method 4.2 Lifestyle influence on breast
cancer – effectiveness of
therapy (#15)
4.3 Technology and/or marker 4.3 Screening tools for high risk 4.1/4.2/4.3 Advances in basic
testing in a clinical setting women (#4) research
4.4 Resources and infrastructure 4.4 Molecular pathology 4.4 Screening tools and
related to detection, diagnosis or platforms (#16) process
prognosis
4.4 Tumour banks and databases
5.2 Localized therapies: clinical 5.1-5.5 Microenvironment of 5.2/5.4 Targeted and tailored
applications metastatic breast cancer (#9) therapies
5.4 Systemic therapies: clinical 5.1-5.5 Microenvironment of 5.2/5.4 Targeted and tailored
applications metastatic breast cancer (#9) therapies
5.7 Resources and infrastructure 5.4/5.7 Phase I and II 5.7 Tumor banks and databases
related to treatment intervention trials (#14)
5.7 Clinical trials
6.1/6.3/6.6/6.8/6.9 QoL
intervention research
6.4 Cost analyses and health care 6 (all) KT of intervention (#7) 6.1/6.4 Evidence-based support
delivery
6.4 Health care delivery (#10) 6.1/6.4/6.5 Target sub-populations
6.5 Education and communication 6 (all) KT of intervention (#7) 6.1/6.3/6.5 Support across the
spectrum
6.4/6.5/6.7 Inequities (#11)
6.1/6.4/6.5 Target sub-populations
6.4/6.5 KT processes (#13)
1- “BIOMARKERS”: Identification of the molecular basis/ biomarkers of progression, to target therapies or imaging and to understand and
predict progression
2- “BC SUBTYPES”: Better appreciation of the functional meaning of breast cancer subtypes and implications for treatment across
populations
3- “LIFESTYLE CHANGES IN SUBPOPULATIONS”: Look at particular subpopulations and how the lifestyle changes that they undergo
influence their breast cancer risk
4- “SCREENING TOOLS FOR HIGH RISK WOMEN”: Development of sensitive, specific, accessible, cost effective screening tools to
identify women with high risk
5- “EARLY DETECTION OF METASTATIC DISEASE”: Early detection of metastatic disease, if oligometastatic disease is treatable with
curative intent
6- “ANIMAL MODELS OF BC PROGRESSION”: Develop better animal models for breast cancer progression
7- “KT INTERVENTIONS”: Knowledge transfer: Increase knowledge about interventions, what works, what doesn’t, studies of uptake and
effectiveness on the interventions where evidence exists
8- “BC HETEROGENEITY”: Better understanding and novel approaches to predict how heterogeneity influences the natural history of
disease; large in scale
9- “MICROENVIRONMENT OF METASTATIC BC”: Therapy for metastatic breast cancer targeted at interaction between tumor and its
microenvironment
10- “HEALTH CARE DELIVERY”: How is care currently being delivered? Are we doing the things we ought to do?
11- “INEQUITIES”: Inequities and social determinants: studies on special populations (e.g. minorities) so that programs can be designed
which are tailored to different populations, ethical quality indicators
12- “SURVIVORSHIP INTERVENTIONS”: Survivorship: better understanding of issues and design of interventions
13- “KT PROCESSES”: What are the best Knowledge Translation processes in different settings, in order to influence practices, policies?
14- “PHASE I AND II INTERVENION TRIALS”: Focus on multi-centre Phase I and II trials to test novel paradigms for intervention
15- “LIFESTYLE INFLUENCE ON BC”: How do nutrition/ lifestyle/ natural remedies influence cancer formation, cancer progression and
effectiveness of therapy at the molecular level?
16- “MOLECULAR PATHOLOGY PLATFORMS”: Support for molecular pathology platforms, coordination of access to clinical trial groups,
infrastructure to support large scale molecular pathology platform
17- “CLINICAL PREVENTION TRIALS IN HIGH RISK WOMEN”: Clinical prevention trials in genetically high risk women
18- “EXPOSURE TO RISK FACTORS”: Biomarkers of exposure to risk factors (environment) through long term cohort studies
19- “ABILITY TO METASTASIZE”: Does the ability to metastasize develop during growth at the primary site?
January 2008
Developments in imaging
• Digital mammography (improved detection for women under age 50 and those with dense breasts)
• Improved evidence of the mortality reduction from screening women in their 40s with mammography
(Coldman et al. BC Screening Program)
• Breast MRI (an accurate and effective way to screen women who are at high hereditary risk
• PET CT for planning therapy
• Better understanding of the role of breast density
• Need to develop optimal screening strategies
• Emergence of breast CT and tomosynthesis – techniques to provide 3-dimensional breast images
• Research on imaging methods to assess response of tumours to neoadjuvant therapy
Molecular targeting
January 2008
• The epidemiology of breast cancer has shown that the disease has both environmental and genetic causes, that “hormonal”
exposures are important, and that some drugs can reduce the frequency of the disease.
• Environmental causes are shown by the wide international variation in disease risk, and by changing rates of disease in
migrants. The study of environmental causes is hampered by difficulties in measuring potentially relevant exposures. It has
been suggested that priority areas for research include: 1) the development of methods to assess nutrient intake, energy
expenditure, and intermediate markers; 2) the enhancement of cohort and cross-cultural studies; and 3) the development of
criteria for the development of full-scale intervention trials (1). Few risk factors for breast cancer can be changed, but body
weight, diet, alcohol intake, hormone use, and mammographic density, are examples of some that can.
• Family clustering of the disease suggests genetic causes of breast cancer. Some genes with strong effects on risk have been
found, but they account for a small proportion of the disease. It is theoretically possible that a relatively small genetically pre
disposed section of the population accounts for most cases of the disease, and some genes of low penetrance have now been
reproducibly identified as associated with the disease. Gene-gene and gene-environment interactions may also be important
in causing breast cancer, but are not well understood, and their study requires very large study populations, as well as
resolution of the problems in measuring environmental exposures referred to above.
• “Hormonal” events, such as menarche, parity and menopause, influence breast cancer risk. Most attention has been focused
on estrogen, and higher levels are associated with a modest increase in risk of breast cancer in pre and postmenopausal
women. Several other hormones, including prolactin and the growth-hormone-IGF axis, may be involved. Little is known about
the factors that regulate levels of exposure to any of these hormones.
• Tamoxifen and raloxifene have been shown to reduce the frequency of breast cancer in selected populations, but concerns
about safety have limited their use to date.
(1) Prentice RL et al. Nutrition and physical activity and chronic disease prevention. J Natl Cancer Inst 2004, 1276-87.
“State of the research” in: Breast Cancer Knowledge Translation, Health Services, Policy and Ethics
Prepared by:
Dr. Eva Grunfeld
Director, Health Services and Outcomes Research, Cancer Care Nova Scotia, Halifax, NS
and Dr. Lisa Schwartz
Associate Professor, Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, ON
January 2008
• Resource allocation:
• Waiting times: 50% had 34+ days from diagnosis to surgery (Nancy Mayo)
• Organization and delivery gaps and competition
• Impact of fee-for-service mammography programs (Heather Bryant)
• More needs to be done to organize and inform better access to care.
• Gaps in services for patients with advanced breast cancer.
• The ethics of breast cancer funding (e.g., for profit organizations).
• Health technology assessment and evaluation of treatment options (cost-effectiveness, quality of life; e.g. of breast
conserving therapy and of adjuvant therapy; DCIS treatment.
• Herceptin use and drug funding (Timothy Whelan)
• Mammography: population-based study outcomes; value in surveillance (Larry Paszat; Jacques Brisson)
• Radiation treatment schedules; effectiveness of accelerated partial irradiation (Timothy Whelan)
• Mammography surveillance after breast reconstruction (Philip Barnsley, Eva Grunfeld, Larry Paszat)
Public Health:
• Value of Public health in screening and education; communicating dietary prevention (C. Rand).
• Impact of environmental contaminants
• Communication of public health messages
Genetics:
Health Services:
Qualitative Studies:
• Experience of members of First Nations (Roanne Thomas-McLean; Jennifer Poudrier)
• Informal careers: informational needs (Eva Grunfeld)
• Impact on families including costs of care and wage loss (Elizabeth Maunsell)
• Involving users in service planning
• Communication (Tom Hack)
Research ethics:
Notes:
The term “user” tends to be preferred over the term “patient” by researchers in these fields; Names of CBCRA-funded researchers are
indicated in parenthesis
Prepared by:
Dr. John Hassell
Professor, Department of Biology, McMaster University, Hamilton, ON
and Dr. Jim Woodgett
Senior Investigator, Director of Research, Samuel Lunenfeld Research Institute, Toronto, ON
March 2008
1. Emerging role of breast cancer stem cells in cancer initiation, progression and metastatic potential, and the implication of the
existence of these cells for treatment. Are we targeting the right cells and judging clinical success by the right criteria?
2. Identification of predictive genes, miRNA and protein signatures and biomarkers of breast cancer progression (metastasis) and
treatment. Based on this knowledge, there will be considerable development and validation of new predictive tests.
3. Key signaling pathways dysregulated in breast tumors have been identified. The emerging use of high-content screens to
identify synthetic lethal combinations of therapies selective for tumour cells with defined activation of pathways offers the
promise of tailored and less toxic therapies.
4. We now recognize the importance of breast tumor heterogeneity and its implications for treatment regimens. This is
leading to the development of sophisticated animal models that reflect the stratification of human disease and considers the
importance of processes such as epithelial to mesenchymal transitions (EMT) in disease etiology.
5. High throughput datasets of protein expression coupled with bioinformatics analysis is leading to identification of novel
therapeutics and therapeutic/diagnostic combinations based on intelligent targeting of pathways and processes dysregulated
in breast cancer.
Prepared by
Dr. David Huntsman
Associate Professor, Department of Pathology and Laboratory Medicine
University of British Columbia, Vancouver, BC
Predictive classifiers:
Can we leverage our clinical trials successes into international leadership in predictive oncology?
How can we move toward cutting edge research that will change the way the disease is currently being managed?
Proteomics is an emerging technology and it will be some time before the technology is easy to use.
Clinical deployment of biomarkers: improving the delivery of standard biomarkers, incorporating new biomarkers into standard practice,
developing new strategies for integrating multiple pathology data types (from standard microscopy to gene chips) into a usable reporting
structure for treatment decisions. Current barriers include lack of training in this area, insufficient knowledge translation and inadequate
policies.
New technologies: can a risk adverse community lead? The pathology community is not engaged enough in research, although this is a
unique and exciting time where pathology could play a major role in cancer research.
Without national collaboration will we have the scale to produce meaningful research? If new research identifies new subtypes of breast
cancer to be different diseases, then inter-institutional collaborations will be needed to generate cohorts of subtypes with reasonable size.
Prepared by:
Dr. Tom Hack
Associate Professor, St Boniface Research Centre, Winnipeg, MB
and Dr. Mary Jane Esplen
Head, Program of Psychosocial and Psychotherapy Research in Cancer Genetics
Toronto General Research Institute, Toronto, ON
January 2008
• The proliferation of treatments for breast cancer over the past decade has made it more challenging for women diagnosed
with early stage disease to decide on their treatment. The Internet has enhanced a patient’s ability to access relevant illness
and treatment information. This mass of available information includes erroneous facts, making it challenging for some
women to get accurate information. Evidence-based decision aids and preparatory information packages are on the rise to help
women become better informed treatment consumers.
• Only in the past few years has the extent of arm morbidity following breast cancer surgery and nodal dissection been
systematically documented. These studies have demonstrated that morbidity is common and persistent. Sentinel node biopsy
may help to reduce this morbidity.
• The clinical practice of psychosocial oncology has expanded in cancer centres across the country, as distress screening has
documented a need for supportive counseling through-out the illness trajectory. Not all centres, however, are equipped for
adequate screening or yet incorporate evidence-based psychosocial counseling.
• The Human Genome Project has resulted in opportunities for identification of individuals and families at high risk for cancer.
Genetic counseling and testing is a particular area of growth, both in terms of service and research. While genetic counseling
services are well-established in most centres, there continues to be a need for the development and testing of psychological
approaches and decisional aids to assist individuals at risk for cancer comprehend and manage their cancer risk.
• Many promising interventions have been developed over the past few years (e.g., distress screening, behavioral insomnia
remedies, group psychotherapies and psychoeducational programs, exercise regimens, decision aids), and the renewed
interest in knowledge translation has sparked concern that promising psychosocial interventions are not reaching eligible
patients.
• The psychosocial needs of minority breast cancer populations (e.g. young women; women from rural settings; cultural groups;
those seeking complimentary therapies) in Canada are not well understood, and targeted services based on solid research
findings are lacking.
• There are some emerging findings on interventions geared towards families and couples, however, there continues to be a lack
of resources and integration of empirically-based services in this area.
• While there are currently evidence-based programs and interventions to provide general psychosocial support to patients,
there are areas requiring further research, including specialized treatments to address alterations in body image and impact on
sexual functioning.
“State of the research” in: Breast Cancer Treatment and Clinical Trials
Prepared by:
Dr. André Robidoux
Professor, Comprehensive Breast Cancer Research Centre, CHUM- Hôtel-Dieu, Montreal, QC
January 2008
Targeted Therapy
• Dual inhibition of HER2 pathway in neoadjuvant and adjuvant therapy of breast cancer
• Role of partial breast irradiation compared to conventional whole breast irradiation in stage 0, I or II breast cancer
• Role of Trastuzumab given concomitantly with radiation therapy compared radiation therapy alone for women with HER2
positive ductal carcinoma in situ
• Assessment of clinical cancer tests trial assigning individualized options for treatment of breast cancer
• Targeted therapy
• Tailored therapy
• Optimization of neoadjuvant therapy to increase pathological complete response and identification of predictors of high
likelihood for pathologic response in the breast and nodes
Prepared by:
Dr. Shoukat Dedhar
Senior Scientist, Cancer Genetics and Developmental Biology, BC Cancer Research Centre, Vancouver, BC
January 2008
Stroma are “Organ Specific” and may have significant impact on the establishment and growth of organ-specific breast
cancer metastases
5. Drug discovery of breast cancer is carried out using models of primary breast cancer. Models of metastatic/systemic breast cancer
should be developed and used for more effective treatment of breast cancer
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community
stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA has
undertaken a number of data gathering activities to identify what a range of stakeholders believe to be the most important breast cancer
research priorities at this time. For research to be successful, the system1 that underlies it needs to provide the necessary resources and
supports. Hence, the data gathering undertaken by CBCRA also sought to identify the systemic changes required in order for the national
breast cancer research framework to be implemented successfully.
2- Methodology
Stakeholders were asked to identify what they saw as being the key gaps and barriers to the conduct of successful research moving
forward. These questions were posed in different ways to the different stakeholder groups, depending on the nature of the data gathering
exercise. Specifically:
Researchers2:
• At the CBCRA’s SRAW workshop, in both discipline specific as well as interdisciplinary groups, researchers identified system
gaps and barriers
• At the NCIC Summit, during the interviews and the in-person discussions, gaps and barriers were identified
• A Focus Group was held by CBCRA in November, 2007 specifically to address this question. 14 senior investigators, across
the research spectrum and from across the country attended a dinner meeting chaired by Dr Martin Yaffe to identify research
system gaps and areas where Canada is internationally competitive in breast cancer research. System gaps identified were
classified into four categories: funding, infrastructure, capacity and relationships between funders and researchers
Survivors:
• Input was received via two open ended questions: one asking for advice with respect to breast cancer research and research
funding and the second being the final request question requesting any additional advice/input
Policy Influencers:
• A specific question was included in the interview guide
Funders:
• The results from the dedicated focus group of researchers described above were tested in the on-line survey
• A specific question was also included in the key informant interview guide.
3- Discussion
The attached table summarizes the major gaps identified by stakeholder group. As would be expected, the researchers – as a group –
identified the most gaps given their intimate knowledge of the system and what is - and is not - currently working. The overall category
with the most mentions is funding. There appear to be a number of specific types of funding that researchers particularly would welcome,
with some of these gaps also being supported by other stakeholders: for example, greater equity in funding across the continuum, a gap
also identified by funders and policy makers. Other areas of convergence between the different groups surveyed, include the building of
researcher capacity, the funding of multi-disciplinary/team grants and the translation of research findings into practice.
While policy influencers were adamant about the need to find ways to ‘formalize and regularize’ interaction between researchers, policy
influencers and other stakeholders, two other gaps attracted a great deal of comment, notably:
• The ability to access tumour banks
• The issue of knowledge translation and finding ways to ensure research findings are taken into account when developing, and
improving, policy and practice.
It is interesting to observe that in some of the international studies, similar types of system issues were also documented. For example, in
the UK study, three ‘generic needs’ were identified related to infrastructure and funding.
1
Definition used for research system: The funding mechanisms, infrastructure requirements, key processes (such as planning and
surveillance) and human resources to support a world class research enterprise
2
See Canadian Breast Cancer Researcher Priorities Summary for more details on the CBCRA and NCIC workshops
Policy
Gaps Researchers Survivors Influencers Funders
Research Capacity
• Current career structure for researchers creates limitations x x
• Build capacity to lead and participate in multi-disciplinary teams x x x
Research Infrastructure
• Tumour Banks: banking and access to patient samples, x x
(including metastatic tissue) and the clinical data associated with
them; access to tissue microarrays;– Issue of lack of funding for
oversight and management of tumour banks. Need for more targeted
tumour banks
•Application of clinical trial infrastructure to new questions/issues x
Funding
• Funding for international networks x x
• Funding for long term studies, including cohort studies x x
• Need for funding of team/multidisciplinary grants x x x
• Salary support to allow clinician scientists to have protected x
research time
• Funding for research on existing cohorts x
• Raise current funding ceilings (especially for epidemiology and x x
prevention grants)
• Lower the pay line/cut-off line on Operating Grants x
(i.e. to increase success rate)
• Create more equity in funding across the breast cancer x x x
research continuum
• Fund mechanisms for bringing people together to x x
collaborate/discuss issues, including regular interaction of researchers,
policy makers and stakeholders
• Need for more creative funding approaches x
Planning and Coordination
• Need for new ways of doing research: of scientists interacting more x
and applying their knowledge/ techniques to real world issues
Knowledge Exchange/Transfer
• Translation of breast cancer findings to other disease sites x
• Gaps in knowledge as to the best way to conduct knowledge translation x x
• Translation of research findings into practice, including to x x x
psychosocial area and publicizing of research results
• ‘Regularization and formalization’ of interaction among policy x
influencers, researchers and stakeholders
Communication
• Weaknesses across the system and with the outside world x
Structure
• Need for better alignment across existing initiatives and across x x
provincial jurisdictions
• Need for better linkage with global agenda/more international x
networks needed
Other
• Limited capacity across the system for change x x
• Studies in specific underserved populations x x
• Identification of appropriate accountability mechanisms x
1- Introduction
CBCRA is convening a National Breast Cancer Research Summit in May 2008, where funding leaders and other breast cancer community
stakeholders will gather to develop a National Breast Cancer Research Framework for Canada. In preparation for this Summit, CBCRA
has undertaken a number of data gathering activities, including reviewing the literature to identify recent attempts outside of Canada to
establish breast cancer research priorities.
2- Overview of Initiatives
Four initiatives were identified as having taken place in the past 18-24 months and are described below. The attached table presents a
mapping against the Common Scientific Outline categories of the results of three of these consultations since the full results of the fourth
have yet to be released.
(I) The Top Ten International Priorities – sometimes referred to as the St Gallen Priorities (results published by Mitch Dowsett et al.,
Breast Cancer Research, 2007, 9:R81)
This is the product of an international effort organized by Professor Mitch Dowsett (Royal Marsden Hospital, London UK) in 2006 to find
consensus as to the key areas of translational research1 among the many clinicians and researchers around the world undertaking in-
novative work in breast cancer. The overall aim of the Top Ten Programme was described formally as to ‘identify, through international
consensus, the ten most important research priorities for the breast cancer community in the area of translational research, and thereby
encourage the targeting of the best research to questions of the highest priority’ (Report, pg 4). The programme was designed to assimi-
late the opinions and ideas from as wide an international group of concerned parties from the research community as possible. Following
an informative, interactive process of amalgamation and feedback of ideas on current and prospective research activities, findings were
disseminated to both the participants themselves and to the wider breast cancer community. Findings were formally announced at the St
Gallen Conference in March, 2007.
Methodology:
• The program was implemented, steered and informed by an advisory group of six internationally recognised experts in the
breast cancer field, led by Prof. Dowsett
• In the programme, which ran from October 2006 to March 2007, the views and feedback from the global breast cancer
research community on the ten most important current research topics/questions in translational breast cancer research were
elicited via email and via an interactive website
• Potential participants were identified from a database of more than 4,000 participants to the 2005 San Antonio Breast Cancer
Symposium and the 2005 St Gallen Consensus Meeting on Primary Therapy of Early Breast Cancer
• Over 600 registrants to the website, from a total of 62 countries around the world, contributed ideas for candidate research
topics/questions, of whom 420 participated in a voting procedure to select and rank the best ten from a total of 70 principal
candidate topics/questions
• Registrants who voted comprised clinicians (53%); academics (24%); research scientists (20%); and pathologists (3%), and the
major world regions were represented in the registrants’/ voters’ countries of origin: North America (USA and Canada: 48%);
Europe (32%); Asia (10%); Oceania (5%); South America (3%); Central America (1%); Africa (<1%); Latin America (0%)
• Participants who registered to vote were each invited to rank their ten selected research topics (from the list of 70) in order
of priority, and these votes were then used to obtain a final weighted total points score for all the topics/questions, from all voters
• Votes were recorded from 420 voters (2,520 votes) from 48 countries, with 48% of voters coming from North America. Half
of the voters identified themselves as clinicians, with the remainder being academics, research scientists or pathologists.
Votes were counted and allocated scores. The scores were summed for each of the topics to create the consensus scoring
• The programme culminated in the identification of the ten most important areas of highest research priority, selected from the
list of 70 specific candidate topics.
1
Translational research is understood for the purposes of this report as endeavours to apply the results of laboratory studies to advance the
treatment of breast cancer
#1- Molecular Signatures • Identification of molecular signatures to select patients who could be spared chemotherapy.
#2- Optimal Chemotherapy • Identify molecular features which indicate the optimal chemotherapy regimen (e.g., combination
or sequential, anthracyclin or not, taxane or not).
#3- DCIS To Progression • Determine the factors in DCIS and/or ADH leading to progression into invasive carcinoma.
#4- Stem Cell • Determine the role of stem cells in breast cancer development, progression and treatment sensitivity.
#5- Triple Negative BC • Identify response/resistance mechanisms and thereby therapeutic targets for triple negative
breast cancer.
#6- Computer Systems • Develop a system (computer etc) that will integrate all the information so far gathered about
breast cancer to build robust models for understanding the aetiopathogenesis, treatment and
prognosis of breast cancer.
#7- No Adjuvant Therapy • Identifying which low risk patients require NO adjuvant therapy.
#8- Pathways • Determine if other growth factor pathways are important targets for therapy such as EGFR, IGFR,
Notch, Hedeghog, Wnt and other angiogenic pathways.
#9- Gene Mutations Responsible • Investigate which gene mutations in a cancer lead to metastases.
For Metastatis
#10- Endocrine Resistance • Identify drugable targets that can be developed/ exploited for therapeutic gain to overcome
primary/secondary endocrine resistance.
For additional information, see http://www.toptenresearch.org/index.html - The full text article is at:
http://breast-cancer-research.com/content/9/6/R81
(II) UK Breast Cancer Research Recommendations based on a Gap Analysis: (results published by A. Thompson et al., Breast
Cancer Research, 2008, 10: R26).
In 2006/7, a gap analysis was conducted among 56 Breast Cancer Campaign grant holders and other prominent UK breast cancer
researchers to determine which areas of breast cancer research, if addressed, could produce the greatest impact on patients.
Methodology:
• In November 2006, the research charity Breast Cancer Campaign convened a panel of leading breast cancer researchers, as
an initial event, to debate and identify the limitations of current research into the pathophysiology, detection, treatment,
prevention and psychosocial aspects of breast cancer. The choice of participants was based on publication record, research
activity and clinical stature, and selected using a database of researchers developed since the inception of the Breast Cancer
Campaign in 1988.
• Seven key research areas were selected for review taking into account UK, European and USA themes in scientific meetings
focused on breast cancer and UK Government analyses of research funding streams
• Prior to the event, participants were asked to review relevant literature and construct short presentations summarising their
areas of expertise and identifying potential research gaps.
• On 2 November 2006 a one-day meeting was convened in London, UK. In the initial subgroup sessions, each participant gave
a presentation to their group. Issues explored during the gap analysis were structured around the following questions: What
do we already know; What are the gaps in our knowledge; What are the problems that need to be overcome to fill these gaps;
What are the translational implications?
Results:
General barriers to progress identified included lack of financial and practical resources (need for improved preclinical models and access
to appropriate and annotated clinical material), and poor collaboration between disciplines.
The table below summarizes the gaps and recommendations in each of the seven themes.
(4) Therapies and Targets • There is an incomplete understanding of the • Build resources through high-quality, uniform,
within breast cancer biology of breast cancer including the multicentre collection of clinical material from
effects of compensatory signalling pathways breast cancer patients before and during treat-
responsible for drug resistance ment (including neoadjuvant studies),
• We cannot determine who goes on to develop including samples of primary tumours as well
metastatic disease or drug resistant cancers as metastatic deposits
• Individualization of therapies could be • Develop methods for easy, reproducible
improved monitoring of response to and development of
• The optimal duration of therapy is unclear for resistance to therapy, as well as early disease
many drugs progression
• Increase research efforts into the role of the
tumour microenvironment and the
immune system in the development and
treatment of breast cancer
(5) Disease markers of breast • Optimum protocols for pathological • Design innovative trials and translational
cancer assessment of DCIS and sentinel lymph nodes studies to develop and evaluate predictive and
• Combining clinical, radiological, pathological prognostic markers
and genomic data in trial populations • Develop close multidisciplinary collaboration
• No robust validated markers have yet been with high-quality histopathology and rigorous
developed for predicting response to chemo scientific assessments to validate new
therapy or radiotherapy markers important for patient outcome
• There is no consensus for markers indicative of • Identify robust markers of resistance or
resistance to therapy sensitivity to therapy that can be applied
• There is a need for improved prognostic indices across the spectrum of breast disease from
based on disease markers screen-detected to metastatic breast cancer
(6) Prevention of breast • The long term effects of chemoprevention of • Improve breast cancer risk prediction models
cancer ER positive cancers are unknown • Encourage transdisciplinary input to
• Prevention of ER-negative cancers remains a prevention trials (e.g., geneticists, epidemiolo-
challenge gists, nutritionists, psychologists and clini-
• There is a need to understand the target cell cians) to study the psychosocial, compliance
for breast cancer prevention and genetic aspects of prevention
• Need to improve current risk prediction • Establish the potential benefits of diet and
models by including modifiable risk factors exercise post diagnosis on outcome and
• The health beliefs of high-risk and population quality of life for breast cancer patients
risk women require exploration
• The effects of breast screening out with
currently targeted groups is not known
• To define deliverable diet and exercise
interventions for the primary and secondary
prevention of breast cancer.
• To elucidate the mechanism for breast cancer
prevention with energy restriction
(III) The CBCRP Priorities: Identifying Gaps in Breast Cancer Research Addressing Disparities and the Roles of the Physical
and Social Environment – April 2008
For the last four years, the California Breast Cancer Research Program (CBCRP), the largest state-funded breast cancer research program in
the United States, has convened over 300 leading experts and advocates from throughout California and across the nation, as a first step in
a five-year effort to find answers that will push breast cancer research forward. The goals of the CBCRP in identifying new research areas
and developing new initiatives are:
• To initiate research that will point to actions that can be taken to reduce the burden of breast cancer
• To conduct research that will provide recommendations to advocacy organizations and policy makers for evidence-
based change
• To stimulate more research into the environment-breast cancer connection and the reasons why some groups of women bear a
greater burden of breast cancer
Environment is defined in this study as all of the non-genetic factors that might lead to breast cancer that are also largely outside an
individual’s control.
The following areas/initiatives were identified and research funding was announced in April, 2008
#2 Ethnic, Racial and Other Disparities in Breast Cancer Incidence and Survival
An Integrated Approach to Understanding Behavioral, Social, and Physical Environment Factors and Breast Cancer Among Immigrants
In general, women come to the U.S. from countries with lower rates of breast cancer than the U.S. rate. The longer they live here, the more
their risk rises. Their daughters who are born here are at still higher risk. Researchers will be invited to submit proposals for trans-disciplin-
ary pilot studies to describe the changes in behavior, social and physical environment that may cause the dramatic increase in breast cancer
risk that occurs as people immigrate to and remain in California. Estimated $1,680,000
Environmental Exposures and Breast Cancer Among a Large, Diverse Cohort of Women
The most promising of two pilot studies will be considered for full study funding to explore environmental exposures and breast cancer
among a large, diverse cohort of women. The statewide California Teachers Study has several universities collaborating on a study inves-
tigating over 133,000 women who periodically provide information about their lives and biological samples (such as blood) to the study’s
researchers. Kaiser Permanente Northern California has initiated a study with over 200,000 women named the Research Program on Genes,
Environment and Health (RPGEH) examining genetics, lifestyle factors, environmental exposures and health status. Two pilot projects will
be funded at $100,000 each. Funding for a full study would be $5-6 million
The purpose of the Breast Cancer Summit was to define new research funding paradigms that would optimize opportunities and reduce
barriers and waste toward the goal of ending breast cancer. The 100 invited participants included funders, advocates, govt agencies and
scientists from academic institutions and the pharma industry.
Methodology:
The approach included a few didactic lectures, followed by a panel of experts and a Q&A session to help set the stage so that all partici-
pants were informed about the current landscape and opportunities. Then, participants were divided into small group round tables where
barriers to progress and key issues were discussed. Overnight, the organizing members (Avon, ACS, Komen, NCI, etc) met and looked over
all the roundtable discussions. On the second day, in plenary, the outcomes of the roundtables were discussed and three priorities agreed.
Results:
1. Biology 1.1 Normal Functioning 1.3 Stem cells (#4 -Determine the role 1.5 Access to appropriate and anno-
1.2 Cancer Initiation: Alterations in of stem cells in breast cancer devel- tated clinical material (Generic needs)
*Prevention Chromosomes opment, progression and treatment
*Diagnosis 1.3 Cancer Initiation: Oncogenes and sensitivity) 1.2/1.5 Encourage development of re-
*Treatment Tumor Suppressor Genes search techniques to allow integrated
1.4 Cancer progression and metastasis 1.3 Pathways (#8 - Determine if other analysis of sequence-level, epigenetic
1.5 Resources and Infrastructure growth factor pathways are important and large-scale somatic changes (
targets for therapy such as EGFR, theme #1 Genetics of breast cancer)
IGFR, Notch, Hedeghog, Wnt and other
angiogenic pathways) 1.2/1.5 Engage in national initiatives
for activities such as high-throughput
1.3 Endocrine resistance (#10 - Identify Policy Influencers’
re-sequencing and UK controls (theme
drugable targets that can be devel- Perspectives
#1 Genetics of breaston
cancer)
oped/ exploited for therapeutic gain to Breast Cancer Research
overcome primary/secondary endocrine 1.2/1.5 Encourage research involving
resistance ) intermediate phenotypes (theme #1
Genetics of breast cancer)
1.4 DCIS to progression (#3 - Deter-
mine the factors in DCIS and/or ADH 1.2/1.3/1.4 Gain a greater understand-
leading to progression into invasive ing of the genetic changes that occur
carcinoma) within atypias and DCIS (theme #2
Initiation of breast cancer)
1.4 Gene mutations responsible for
metastasis (#9 - Investigate which 1.5 Enhance access to appropriate
gene mutations in a cancer lead to clinical materials, including sequential
metastases) samples obtained during treatments
PolicytoInfluencers’
extending new agents (theme #3
1.5 Computer system (#6 - Develop Progression of breaston
Perspectives cancer)
a system (computer etc) that will
CSO Code³ Breast Cancer Research
integrate all the information so far 1.4 Consider genetic signature when
gathered about breast cancer to build exploring progression biology and
robust models for understanding the designing clinical trials (theme # 3
aetiopathogenesis, treatment and Progression of breast cancer)
prognosis of breast cancer)
1.5 Build resources through the high-
quality, uniform, multicentre collection
of clinical material from breast cancer
patients before and during treatment
(including neoadjuvant studies), includ-
ing samples of primary tumours as
well as metastatic deposits (theme #4
Therapies and targets in breast cancer)
National Breast Cancer Research Summit | Results p 88
Mapping The Future
International Research Priorities, Identified Gaps and Barriers
2. Etiology 2.1 Exogenous Factors in the Origin 2.4 Computer system (#6 - Develop 2.4 Access to appropriate and anno- 2.1/2.2/2.3/2.4 Environmental links to
and Cause of Cancer a system (computer etc) that will tated clinical material (Generic needs breast cancer
*Prevention 2.2 Endogenous Factors in the Origin integrate all the information so far #2) *Chemicals Policy and Breast Cancer
*Diagnosis and Cause of Cancer gathered about breast cancer to build * Make Chemicals Testing Relevant to
2.3 Interactions of genes and/or robust models for understanding the 2.4 Cross disciplinary working (Generic Breast Cancer
genetic polymorphisms with exogenous aetiopathogenesis, treatment and needs #3) *Environmental Causes of Breast
and/or endogenous factors prognosis of breast cancer) Cancer Across Generations
2.4 Resources and Infrastructure 2.3/2.4 Encourage development of re-
related to etiology search techniques to allow integrated 2.1/2.2/2.3/2.4 Ethnic, racial and other
analysis of sequence-level, epige- disparities in breast cancer incidence
netic and large-scale somatic changes and survival
Policy
(theme Influencers’
#1 Genetics of breast cancer) *An Integrated Approach to Under-
Perspectives on standing, Behavioral, Social and
CSO Code³ 2.3/2.4 Engage
Breast in national
Cancer initiatives
Research Physical Environment Factors and
for activities such as high-throughput Breast Cancer Among Immigrants
re-sequencing and UK controls (theme *Demographic Questions for California
#1 Genetics of breast cancer) Breast Cancer Research
*Understanding Racial and Ethnic
2.3/2.4 Encourage research involving Differences in Stage-Specific Breast
intermediate phenotypes (theme #1 Cancer Survival
Genetics of breast cancer)
4. Early detection, diagnosis and 4.1 Technology development and/or 4.1/4.2/4.3 Optimal chemotherapy 4.4 Access to appropriate and anno-
prognosis marker discovery (#2 - Identify molecular features which tated clinical material (Generic needs
4.2 Technology and/or marker indicate the optimal chemotherapy #2)
*Screening evaluation with respect to fundamental regimen)
*Treatment parameters of method 4.4 Cross disciplinary working (Generic
*Diagnosis 4.3 Technology and/or marker testing Policy
needs #3) Influencers’
in a clinical setting Perspectives on
4.4 Resources and infrastructure Breast Cancer
4.4 Encourage Research
development of research
related to detection, diagnosis or techniques to allow integrated analysis
prognosis of sequence-level, epigenetic and
large-scale somatic changes (theme #1
Genetics of breast cancer)
4. Early detection, diagnosis and 4.4 Build resources through the high-
prognosis (cont.) quality, uniform, multicentre collection
of clinical material from breast cancer
*Screening patients before and during treatment
*Treatment (including neoadjuvant studies), includ-
*Diagnosis ing samples of primary tumours as
well as metastatic deposits (theme #4
Therapies and targets in breast cancer)
5. Treatment 5.1 Localized therapies: discovery and 5.1/5.3 Triple negative BC (#5 - Identify 5.7 Access to appropriate and anno-
development response/resistance mechanisms and tated clinical material (Generic needs
*Treatment 5.2 Localized therapies: clinical thereby therapeutic targets for triple #2)
applications negative breast cancer)
5.3 Systemic therapies: discovery and 5.7 Cross disciplinary working (Generic
development 5.1 No adjuvant therapy (#7 - Identify- needs #3)
5.4 Systemic therapies: clinical ing which low risk patients require NO
applications adjuvant therapy) 5.7 Enhance access to appropriate
5.5 Combinations of localized and clinical materials, including sequential
systemic therapies 5.3 Endocrine resistance (#10 - Identify samples obtained during treatments
5.6 Complementary and alternative drugable targets that can be devel- extending to new agents (theme #3
treatment approaches oped/ exploited for therapeutic gain to Policy Influencers’
Progression of breast cancer)
5.7 Resources and infrastructure overcome primary/secondary endocrine Perspectives on
related to treatment resistance) Breast Cancer
5.3 Consider Research
genetic signature when
exploring progression biology and
designing clinical trials (theme # 3
Progression of breast cancer)
6. Cancer control, survivorship 6.1/6.2/6.4/6.5/6.9 Ensure research 6.2-6.9 Intersections of multiple factors
and outcomes gives greater attention to all stages that impact breast cancer
of breast cancer and that the needs of *New Statistical Models to Address
*Supportive care older women and those from a range of Disease Complexity
ethnic groups are included (theme #7 *Biological/Ecological Models of
*Palliative care (cont.)
Psychosocial aspects of breast cancer) Breast Cancer Causation and
Prevention
*Environmental Exposures and Breast
Cancer Among a Large, Diverse Cohort
of Women
Policy Influencers’
7.1/7.2 Improve preclinical models
7. Scientific model systems 7.1 Development and characterization Perspectives on
(Generic needs #1)
of model system Breast Cancer Research
*Prevention 7.2 Applications of model systems
7.3 Cross-disciplinary working (Generic
7.3 Resources and infrastructure
*Diagnosis needs #3)
related to scientific model systems
*Treatment
7.1/7.2 Develop three-dimensional cell
culture models, containing multiple
cell types, which reflects the tissue ar-
chitecture of the normal and diseased
breast (theme #2 Initiation of breast
cancer)
(1) The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)
(2) The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment, Supportive Care and Palliative Care.
(3) Each CSO category is broken down further into “codes”. See www.cancerportfolio.org/cso.jsp for all details
Cancer Control Continuum The six cancer control categories are: Prevention, Screening, Diagnosis, Treatment,
Supportive Care and Palliative Care.
CCRA The Canadian Cancer Research Alliance is an alliance of cancer research funding organizations and
affiliated partners working together to enhance the overall state of cancer research funding in Canada
through improved communication, cooperation and coordination.
CCRA started within the context of the Canadian Strategy for Cancer Control (CSCC), which repre-
sents a very broad partnership of Canada’s leading cancer organizations that has worked since the
late 1990s to create an inclusive, integrated and comprehensive strategy to address the increasing
number of new cancer cases and cancer deaths in Canada.
CPAC The Canadian Partnership Against Cancer is a relatively new independent corporation charged with
accelerating action on cancer control across Canada.
The foundation document for CPAC is the Canadian Strategy for Cancer Control, which was developed
over the course of seven years with a number of stakeholder groups.
CSO Code The Common Scientific Outline (CSO) is a classification system organized around seven broad areas of
scientific interest in cancer research (www.cancerportfolio.org/cso.jsp)
CSCC The Canadian Strategy for Cancer Control is a stakeholder-driven initiative, led by a partnership
between the Canadian Cancer Society, National Cancer Institute of Canada, Canadian Association of
Provincial Cancer Agencies and Health Canada.
Collaboration “a process through which parties who see different aspects of a problem can explore constructively
their differences and search for solutions that go beyond their own limited vision of what is pos-
sible” (Gray, 1989: 5). There are different types of collaboration. A small body of literature does exist
that has segmented the term “collaboration” into a number of different models such as Coexistence,
Cooperation, Coordination, Coalition and Coadunation based on factors such as level of autonomy
and integration, locus of decision making, and resources deployment (Bailey and Koney, 2000; Frey,
Lohmeier, et al., 2004; Gajda, 2004; Hogue, 1991; Peterson, 1991)
Elements of a Research Strategy The content that must be included in a national breast cancer research framework for it to be
credible. Examples might include: description of methodology; identification of enabling structure;
having both national and local/regional priorities; having a balanced portfolio
Knowledge Translation The exchange, synthesis and ethically-sound application of knowledge – within a complex system of
interactions among researchers and users - to accelerate the capture of the benefits of research for
Canadians through improved health, more effective services and products, and a strengthened health
care system
Partnership A partnership is an arrangement in which the parties in a spirit of co-operation agree to carry on an
enterprise, contribute to it, by combining property, knowledge or activities and to share its profit.
There may or may not be a formal agreement. Thus, a partnership is a specific type of collaboration
that describes an ongoing relationship where the entities are vested in each others’ success
Research System The funding mechanisms, infrastructure requirements, key processes (such as planning and
surveillance) and human resources to support a world class research enterprise
Translational research For the purposes of the Top 10 Priorities report, translational research is defined as endeavours to
apply the results of laboratory studies to advance the treatment of breast cancer
Definitions of terms used in survey of breast cancer survivors, family members/loved ones and others
involved in breast cancer (survey instrument of main categories of breast cancer research)
Risk factors and how to prevent breast cancer This kind of research would study the risk factors that make people more likely to get
breast cancer. It would include lab and population studies into risks such as smoking,
toxic chemicals, air and water pollution, and the use of common medicines such as hor-
mones and anti-depressants. Research in this topic would also look at how family history,
breast density, food, vitamins, and exercise may be linked to the risk of breast cancer.
Screening for breast cancer (early detection) The kinds of screening tests we now use include mammography, digital and magnetic
resonance imaging (MRI). These tests make it possible to find cancer early. Research
on this broad topic would focus on finding better and more advanced ways to do breast
cancer screening.
Breast cancer treatment Research on this topic would look at ways to improve breast cancer treatment that are
now in common use across Canada. New drug-based ways to treat cancer, such as
vaccines and drugs that target certain cells within the breast, would be explored.
Complementary and alternative medicine would also be studied.
Caring support and quality of life When a woman learns she has breast cancer, this may have a deep effect on how she
feels about her life. Research in this topic includes the benefits of support groups and
group therapy. Studies would also look at how breast cancer affects a woman’s social
relationships and how certain groups of women (based on their age, ethnic group, etc.)
cope with the disease. How women make decisions about treatment and how they
use “decision aids” (e.g. brochures) would be studied. A final part of this topic includes
research into ways to help women with breast cancer learn to reduce stress.
Health systems and health services Research on this topic has a strong community focus. Some studies might evaluate
breast cancer screening programs. Studies might also focus on women’s access to: health
services, support services, end-of-life care, ongoing help, and health services outside the
mainstream. An important part of this type of research is understanding how research
findings translate into medical practice.
Lab research (also called basic research) Studies that fall under this topic include laboratory research on hormonal factors; the role
of tumour suppressor genes and cancer-causing genes; how breast cancer develops over
time; cell markers; how cancer spreads; and family history factors. New technologies are
used in many of these lab studies.