Breast Cancer Screening Knowledge Exchange Virtual Event - “What We Heard” Summary Report
Table of Contents
- Executive Summary
- 1.0 Background
- 2.0 Panels and Presentations
- 2.1 Setting the Stage – Breast Cancer Screening Guidelines in Canada and Abroad
- 2.2 Stakeholder Perspectives – Gaining an Understanding
- 2.3 Research and Innovation for Advancing Screening Practices – Current Challenges
- 2.4 Research and Innovation for Advancing Screening Practices – Looking to the Future
- 3.0 Roundtable Discussions
- Appendices
Executive Summary
Background
In June 2023, PHAC announced its intention to host a knowledge exchange event to bring together experts, partners, those with lived experiences, and stakeholders, to discuss the current state of the science, including knowledge gaps, related to breast cancer screening. This Knowledge Exchange Event (KEE) was organized and convened by the Public Health Agency of Canada (PHAC) with support from Health Canada, the Canadian Institutes of Health Research, the Canadian Partnership Against Cancer, the Canadian Cancer Society, the Canadian Breast Cancer Screening Network, and Dr. Aisha Lofters. The Canadian Public Health Association (CPHA) was contracted as the event coordinator and provided advice on planning and logistics.
Purpose
The event was intended to inform the Canadian Task Force on Preventive Health Care (CTFPHC)’s breast cancer screening guideline update and foster collaboration between stakeholders to advance issues related to breast cancer screening in Canada.
Event
The Breast Cancer Screening KEE was held on September 26–27, 2023, with participants from a variety of sectors and regions across Canada. This event included presentations from 15 different stakeholders across three main areas: breast cancer screening guidelines in Canada and abroad, stakeholder perspectives, and research and innovation for advancing screening practices (including current challenges and looking to the future). Panel presentations were followed by Q&A sessions, as well as roundtable discussions with audience members.
Discussion Highlights
Roundtable discussions focused on the following aspects of breast cancer screening in Canada:
- Current available data and research (currently underway and required in the near future)
- The harms of screening (including false positives and overdiagnosis/overtreatment)
- Use of modelling, including the OncoSim Model, to inform guidance and practices.
- The U.S. Preventive Services Task Force (USPSTF) recommendations and Alberta Clinical Practice Guidelines as references for CTFPHC’s breast cancer screening guideline update
- Tomosynthesis and mammography as screening modalities
- Accessibility challenges (including the primary care crisis and remoteness as major barriers)
- Benefits of screening and added benefits of organized screening programs
- Variation in screening practices across Canada
- All-cause mortality as a study endpoint (pros and cons)
- Demographic / race-based data gaps, with a focus on the higher mortality rate in Black women (i.e., genetics vs. social determinants of health)
- Risk-based screening (including the Polygenic Risk Score [PRS])
- Equity and breast cancer screening
- Breast density
- Cultural safety
- The Canadian National Breast Screening Studies (CNBSS) data and influence on breast cancer screening guidelines
- Advancements in technologies used for breast cancer screening, notably blood tests and Artificial Intelligence (AI)
- Education and awareness on breast cancer screening, including Shared Decision-Making (SDM)
Final Reflections
Participants expressed the following final reflections:
- We now have information on the stage distribution and 10-year net survival with some provinces/territories making screening available at 40 years old vs. 50 years old and this knowledge should be considered when updating guidelines.
- Not evaluating potential benefits due to the lack of recent randomized controlled trial (RCT) data would pose a risk for many women. Evaluating potential benefits with evidence that is broader than RCTs.
- Older RCTs do not account for advancements in modern imaging technology and current treatments. For example, RCTs conducted in the 1960s and 1980s (e.g., Canadian National Breast Screening Studies (CNBSS) I and II) were conducted prior to the use of Tamoxifen (in 1984), for instance, which is now a standard treatment for breast cancer. Therefore, a concern is that this data is not reflective of current treatments.
- In a modern and emerging data driven environment, it is unlikely there will be new RCTs on breast cancer screening. Opportunities to leverage different types of evidence to support guidance development exist. Evergreen and dynamic guidelines rather than guidelines with periodic updates would be more responsive to evolving evidence.
- The CTFPHC should be transparent and clear in weighing evidence on benefits (e.g., lives saved) and harms (e.g., false positives and overdiagnosis). Also, the effects of morbidity associated with treating advanced cancers should be included.
- Non-White women have different rates of aggressive cancers and there is a need for race-based data to have a better understanding of how screening could help disparities in clinical outcomes.
- The CTFPHC should evaluate available race-based data for breast cancer screening and identify where Canadian data might be lacking (e.g., Black women’s mortality from breast cancer in Canada).
- There is a myriad of systemic issues that impact equitable access to screening, diagnosis, and treatment of breast cancer for Indigenous women in Canada. Disparities in determinants of health include income, education, housing, and social inequities that are associated with higher-grade breast tumours, later stage at presentation, and higher rates of breast cancer mortality.
- Self-determination and cultural safety are two critical principles that should be incorporated in the development of guideline recommendations.
1.0 Background
1.1 About this Report
This report provides a summary of panelist and participant contributions from a Knowledge Exchange Event (KEE) hosted by the Public Health Agency of Canada (PHAC) in September 2023. The KEE brought together experts, partners, those with lived experiences, and other stakeholders to discuss the current state of the science, including knowledge gaps, related to breast cancer screening. The outcomes from the KEE were synthesized and analyzed in this report.
The Canadian Public Health Association (CPHA) was contracted by PHAC to act as the event coordinator, provide advice on planning and logistics, and host the KEE. This report was funded by PHAC and prepared by CPHA in collaboration with PHAC. It does not provide an overall representation of public opinion, institutional policies or positions, nor that of a randomly selected population sample. Rather, it presents a synthesis of the ideas expressed by the people who participated in the KEE. This report does not necessarily reflect the opinions of CPHA or PHAC.
1.2 Acknowledgement
Thank you to everyone who took the time to participate in this KEE. Your contributions and insights will inform the Government of Canada’s efforts to improve the health of people living in Canada.
1.3 Context
In June 2023, the Honourable Jean-Yves Duclos, then Minister of Health, announced PHAC’s intention to host a KEE related to breast cancer screening. The Breast Cancer Screening Knowledge Exchange Virtual Event aimed to:
- Gather diverse viewpoints by bringing together experts, researchers, patient partners, and stakeholders to create an open and collaborative environment where participants could share their perspectives, insights, and experiences related to breast cancer screening.
- Explore the existing state of breast cancer screening in Canada and other jurisdictions, including challenges, opportunities, and suggestions for improvements to inform equitable screening practices and patient care across the country.
- Engage participants in discussions on current knowledge gaps, where future research efforts should be focused, including emerging evidence and innovations in breast cancer screening.
- Facilitate connections and collaborations among experts, partners, and stakeholders involved in breast cancer screening to identify synergies and to encourage potential future collaborations.
This two-day virtual KEE created an accessible, safe, and inclusive space for all participants to be treated with dignity and respect, during which diverse perspectives and experiences were expressed and appreciated. This was accomplished by observing the following engagement strategies during discussions:
- Active listening
- Empathy and understanding
- Open-mindedness
- Respectful language
- Staying on topic
- Avoiding blame and accusations
- Clarification and asking questions
- Give and take
Refer to Appendix A for more details about the Event Program.
1.4 Process
To assist in planning this event, PHAC established an Advisory Planning Committee, which included representatives from Health Canada, the Canadian Institutes of Health Research (CIHR), the Canadian Partnership Against Cancer (CPAC), the Canadian Cancer Society, and the Canadian Breast Cancer Screening Network (CBCSN). Dr. Aisha Lofters also provided valuable feedback to key meeting documents.
The KEE was held on September 26–27, 2023, with participants from a variety of sectors and regions across Canada. This event included presentations from 15 different stakeholders across three main areas: breast cancer screening guidelines in Canada and abroad, stakeholder perspectives, and research and innovation for advancing screening practices (including current challenges and looking to the future). After each panel, participants were encouraged to ask questions and share their views on the various topics presented either verbally or by using the Q&A chat function in Zoom.
To ensure accessibility, French/English simultaneous interpretation and closed captioning were provided for each session, and low-vision participants were provided with materials in advance. The KEE was hosted by using the Zoom platform, and was facilitated by NIVA Inc. team member, Ms. Julie Desmarais, contracted by CPHA.
The KEE Advisory Planning Committee established the list of panelists and participants to be invited to the KEE based on a variety of criteria and methods, including their leadership and subject matter expertise in the breast cancer screening sector. Panelists and participants included people with lived experience, Canadian and international experts, health professionals, academics and researchers, representatives from patient advocacy groups, Indigenous and racialized communities, non-governmental organizations, as well as various provinces and territories.
Over 100 key stakeholders were invited to attend and approximately 70 of them attended both days. The Honourable Ya'ara Saks, Minister of Mental Health and Addictions and Associate Minister of Health, and PHAC senior officials also participated in the KEE.
2.0 Panels and Presentations
Participants heard presentations from various stakeholders. Panel presentations were followed by Q&A sessions as well as roundtable discussions with audience members. Summaries of all presentations and highlights from all live roundtable discussions and Q&A chat discussions are provided in this section.
2.1 Setting the Stage – Breast Cancer Screening Guidelines in Canada and Abroad
This panel showcased the experiences of groups developing breast cancer screening guidelines in Canada and abroad.
2.1.1 Canadian Task Force on Preventive Health Care (CTFPHC)
Presented by Drs. Guylène Thériault and Ahmed Abou-Setta (Canadian Task Force on Preventive Health Care)
The panelists’ presentation was entitled, “Breast Cancer Screening: Update to the CTFPHC 2018 guideline.”
Key highlights of the presentation included:
The process that the Canadian Task Force on Preventive Health Care (CTFPHC) is using to update their 2018 Breast Cancer Screening Guideline was presented. When the Breast Cancer Screening Guideline was last updated in 2018, the recommendations were based on an overview of systematic reviews of randomized trials as well as patients’ values and preferences. The 2018 breast cancer screening recommendations were as follows:
- For women aged 40 to 49 years, guidelines do not recommend screening with mammography
- For women aged 50 to 69 years, guidelines recommend screening with mammography every 2–3 years
The guideline also stated that women in the age range of 40 to 49 may choose to undergo screening based on their personal values and preferences. In such cases, healthcare providers should actively participate in shared decision-making with women expressing an interest in screening. In both age ranges, the decision to undergo screening is conditional on the relative value that a woman places on possible benefits and harms from screening, shaped through shared decision-making with a healthcare provider.
The CTFPHC decided to update the current guideline in February 2023 (with an expedited timeline since June 2023) and the update will consider a variety of data sources, including:
- Systematic review on the effectiveness of mammography (including observational studies)
- Systematic review on comparative effectiveness (USPSTF’s most recent review)
- Systematic review of patient values and preferences
- Modelling (OncoSim)
- Literature scan on the risk of breast cancer and death from breast cancer in Canada
- Canadian epidemiological data (Statistics Canada)
In addition, the CTFPHC received a total of 145 documents (including 88 peer-reviewed publications) from 19 individuals and nine organizations through its online portal, which was open during the month of August 2023. Publications will be reviewed for inclusion in the systematic reviews currently underway.
Data derived from the various sources is needed in absolute numbers to provide frontline clinicians with breast cancer screening recommendations and to inform and equip Canadian women to decide whether they want to participate in screening or not.
The three main questions leading the update of breast cancer screening guidelines are:
- What are the benefits and harms of different mammography screening strategies vs. no screening in women aged 40 and older, and do benefits and harms differ based on population characteristics (age, breast density, race and ethnicity, socio-economic status, availability of mammography screening, family history)?
- What are the comparative benefits and harms of different mammographic breast cancer screening strategies in women aged 40 and older, and do comparative benefits and harms differ based on population characteristics?
- What is the relative importance placed by patients on the potential benefits and harms of breast cancer screening by mammography?
The clinical outcomes being considered for the guideline are:
- Breast cancer mortality
- Total mortality
- Types of treatment (surgery, radiotherapy, chemotherapy)
- Distribution by stage of cancer
- Morbidity (including side effects and functionality)
- Overdiagnoses
- False positives (total and requiring biopsy)
- Interval cancers
- Quality of life
- Years of life gained or lost
The CTFPHC’s next steps include:
- Stakeholder-reviewed research plan will be made publicly available on Open Science Framework (OSF) (with responses to stakeholder comments)
- The CTFPHC Breast Cancer Working Group will analyze available data in mid-October 2023
- Follow-up meetings are planned for October and November 2023 to develop a first draft
- Recommendations for specific groups (if data is available) in the FallFootnote 1
2.1.2 U.S. Preventive Services Task Force (USPSTF)
Presented by Dr. Wanda Nicholson (U.S. Preventive Services Task Force)
The panelist’s presentation was entitled “U.S. Preventive Services Task Force: Screening for Breast Cancer.”
Key highlights of the presentation include:
This presentation was focused on the draft update of the U.S. Preventive Services Task Force (USPSTF) Breast Cancer Screening Guidelines. Breast cancer is the second most common cancer and second most common cause of cancer death among American women. In 2023, it is estimated that there will be 297,790 new cases of breast cancer, with 43,170 women who will die of the disease. Black women are 40% more likely to die from breast cancer despite similar incidence among Non-Hispanic White and Non-Hispanic Black women.
Recommendations:
The 2016 U.S. Preventive Services Task Force (USPSTF) Breast Cancer Screening Recommendations stated the following:
- The decision for a woman between the ages of 40 to 49 to be screened is an individual one.
- Current evidence is insufficient to assess the benefits and harms of digital breast tomosynthesis (DBT) as a primary screening method for breast cancer.
- The evidence also remains insufficient to assess the balance of benefits and harms of screening mammography in women aged 75 years or older as well as for supplemental screening using ultrasonography or Magnetic Resonance Imaging (MRI) in women identified to have dense breasts.
In May 2023, the USPSTF published draft breast cancer screening recommendations based on evidence of the benefits and harms for screening pertaining to the age to start and stop screening and the screening interval and included clinical trials, studies, and collaborative modelling. The specific draft recommendations are:
For women ages 40–74 years, biennial screening mammography is recommended.
- For women ages 75 and older, the current evidence is insufficient to support screening mammography.
- For women with dense breasts, the current evidence is insufficient to recommend supplemental screening for breast cancer using breast ultrasonography or MRI.
The following resources were used to develop these recommendations:
- Epidemiologic trends using Surveillance, Epidemiology, and End Results (SEER) data showed a 2.4 annual per cent increase in invasive breast cancer incidence in women 50 years and younger and a 0.6 annual per cent increase in invasive breast cancer incidence in Non-Hispanic Black women aged 50 and younger, from 2016 to 2019.
- Breast Cancer Surveillance Consortium (BCSC) data from over 12,000,000 mammograms recorded in 1996–2019 from the six active sites (including 18,000 breast cancers diagnosed through screening).
- Collaborative Modelling that assessed screening strategies for age to start and stop screening, as well as screening intervals. Data input for models included new data on real world patterns of care, cancer type, interval cancers, and current data on treatment efficacy. Models that were specific for Black women were included. Treatment efficacy was assumed to be equal by race, while treatment effectiveness was modelled as lower for Black women due to the impact of systemic racism on treatment quality.
Addressing inequities:
To achieve the benefit of screening and mitigate disparities in breast cancer mortality by race and ethnicity, it is important that all persons with abnormal screening mammography receive equitable and appropriate follow-up evaluation as well as additional testing (including biopsies), and that those diagnosed receive effective treatment. Studies have identified disparities in follow-up after screening for Black, Hispanic, and Asian women, along with disparities in breast cancer treatment for Black women. Improvements are needed across the entire spectrum of breast cancer care to help mitigate inequities. For instance, starting screening at age 40 is a first step in addressing the higher mortality from breast cancer in Black women.
Research gaps:
- Determining the benefits and harms of screening for breast cancer in women aged 75 years or older.
- Informing clinicians and patients on how to appropriately evaluate dense breast tissue on a screening mammogram (which occurs for over 40% of women screened).
- Understanding and addressing the higher breast cancer mortality among Black women.
- Identifying approaches to reduce the risk of overdiagnosis that leads to overtreatment (i.e., breast lesions identified through screening that may not be destined to cause morbidity and mortality, including Ductal carcinoma in situ [DCIS]).
2.1.3 Alberta Health Services
Presented by Mr. James Newsome (Program Innovation & Integration, Alberta Health Services Screening Programs)
The panelist’s presentation was entitled “Alberta Breast Cancer Screening Clinical Practice Guideline 2022 Update.”
Key highlights of the presentation include:
The focus of this presentation was the recent update of the Alberta Breast Cancer Screening Clinical Practice Guideline (CPG). The Guideline Committee was funded by the Alberta Medical Association’s Accelerating Change Transformation Team (ACTT). Committee members included family physicians, radiologists, mammography technologists, medical oncologists, surgeons, public representatives, nurse practitioners, public health and preventive medicine physicians, epidemiologists, and breast cancer screening program experts (including external reviewers). The Committee reviewed evidence from review reports, micro-simulation modelling using Alberta breast cancer screening data, and expert opinion. Decisions were made by weighing the benefits and harms in conjunction with the strength of the evidence using a modified Delphi process to reach consensus.
The priority topics for the 2022 update included:
- Average risk recommendations
- Breast density
- Higher-than-average risk
- Tomosynthesis
- Clearer and more inclusive language for LGBTQ2S+
New recommendations:
For persons with average risk, the biennial screening recommendation was lowered to begin at age 45 based on new evidence that mortality is reduced when screening prior to age 50. The participation rate for ages 45–49 was already 24% (vs. ages 50–74 which is 65%). In 2018, 246 breast cancers were detected in Albertans aged 45–49 (vs. 287 aged 50–54). New recommendations state that:
- For 40–44 years of age, routine screening is not recommended but may be considered based on informed discussion and individual preference (with optimal interval being annually).
- For 45–74 years of age, biennial screening is recommended.
The updated guidance does not recommend MRI, ultrasound, tomosynthesis, thermography, or breast self-examination for routine screening. Specifically:
- For tomosynthesis, there is insufficient evidence to recommend 3D tomosynthesis over 2D mammography for screening average risk individuals. There are inconsistent findings with tomosynthesis screening (such as in invasive breast cancer detection, impacts on false positive rates, abnormal call-back rates, and annual return to screen rates). Evidence on interval cancers, advanced cancer rates, and mortality is still pending.
- For ultrasound, it is only recommended as a supplemental tool since it produces more false positives. Ultrasound is recommended for individuals with extremely dense breast tissue (i.e., it can detect an additional 3.8 cancers per 1,000 people with dense breasts).
- For risk categories, the current guidance has updated risk ages to reflect current practice and expert opinion (e.g., new recommendations are from ages 30–70). For higher-than-average risk, requests have been made for an intermediate risk category and this work is ongoing. The definitions for higher-than-average risk vary and some use lifetime risk (15–20%) while several guidelines define by specific criteria. Experts agree that the use of pre-defined criteria is more straightforward and independent than the risk model available.
These changes are projected to impact the following:
- High-risk clinics, LGBTQ2S+, etc. since recommendations are now in line with current practice.
- Higher-than-average risk individuals since this category is more clearly defined.
- Statements on new technologies since they are more specific.
Since the publication of the revised guideline, the total number of initial screens for persons in the 40-44 and 45-49 year age groups has increased, although the updated program is continuing to be fully implemented.
2.1.4 Roundtable Discussion Summary
This section presents a summary of key discussion items raised by participants and additional information provided by panelists during the roundtable session that followed each of the presentations summarized above.
Data and research on breast cancer screening:
- It was commented that it is very unlikely that new RCTs focusing on breast cancer screening versus no screening will be available in the near future.
- The lack of clinical trials on women below the age of 40 is a major knowledge gap for breast cancer screening.
- As with all areas of research, there is a significant lag time between what is going on the ground and what is being researched and published. Therefore, utilizing existing data and statistics from various sources can provide valuable insights into the current environment.
- It was mentioned that not all research designs are equal; therefore, it is important to review the best available data from different sources to make decisions on the totality of available evidence. Collaboration with various experts is also important for interpreting results of studies to put outcomes into perspective and provide context to the data.
Harms:
- It was suggested that some harms (e.g., overdiagnosis) could be a rationale for choosing a specific treatment (e.g., a less invasive or aggressive treatment) or for choosing to rely on active surveillance as an approach. This is currently being done for prostate cancer screening, but not for breast cancer. Some argue it should not be a reason to not screen as not screening may translate to a missed opportunity to find lethal cancers, especially in younger women.
False positive:
- It is defined as a positive result that is confirmed not to be cancer with further tests and investigation. It was suggested that false positive rates (viewed as a harm) should be considered when analyzing benefits and harms of screening.
- It was mentioned that the term is often misunderstood – it does not mean that someone was told that they had cancer but did not. It means that the patient gets called back for more tests and investigations. This can be alarming for women undergoing the screening process and healthcare providers should be mindful of this.
Overdiagnosis:
- It is defined as the detection of a cancer that would not result in harm to the patient (e.g., that would not cause death to the patient, who might die of other causes). This includes a cancer that would not have become symptomatic and that was only found through screening. Overdiagnosis of precancerous lesions (e.g., Ductal Carcinoma in situ [DCIS]) can be distinguished from overdiagnosis of cancers.
- Overtreatment (resulting from overdiagnosis) is of concern. The fact that we are finding lesions very early on should be embraced, although there could be future refinement in terms of what best practices apply (e.g., additional tests, treatment, surveillance). An important role for the oncology community moving forward is to determine how best to address small invasive cancers.
- More research is needed on overdiagnosis/overtreatment of breast cancer to gain a better understanding on how to manage such cases, which could help guide breast cancer screening practices moving forward. Overdiagnosis is still considered when weighing benefits and harms for screening guidelines – not only for the overtreatment component but for the burden of living with a diagnosis.
- Overdiagnosis might be a more common issue in older women given that breast cancer is more common in older women, but these cancers may not ever cause symptoms prior to death from other causes such as other cancers or heart disease.
OncoSim modelling:
- OncoSim is the model being used for the current breast cancer screening guideline updates as it is the only model available in Canada. Updates are conducted as part of CPAC's ongoing operations and are currently underway.
- It was suggested that the current version of OncoSim has not been updated since 2011, meaning that variables like costs, survival, and treatments may be outdated. For example, the survival in 2011 for metastatic breast cancer was about 1 year, whereas today it is 3–5 years. There are parameters within the current OncoSim model such as those related to breast density that do not currently differentially effect projections of breast cancer incidence, detection or mortality: these, too, can be modified by users. It was noted that OncoSim is designed to be flexible, letting users create scenarios that replace default model assumptions with their own input (e.g. costs, survival rates, treatments, and adding supplementary screening by breast density).Footnote 2
- It was noted that despite some challenges with the OncoSim model, modelling work performed by an independent research group using OncoSim did align with findings of Dr. J. Seely (described later in this report) that describe reductions in mortality from breast cancer in women who begin screening at age 40.
Considerations for USPSTF recommendations as a reference:
- The draft recommendations are based on statistical modelling with the output that screening mammography reduces breast cancer mortality by ~25% and that screening 1,000 women from 40 to 74 years of age, instead of 50 to 74, would result in one to two fewer breast cancer deaths over a lifetime.
- In contrast, meta-analyses of randomized clinical trials (RCTs) found a 13–16% relative risk reduction. It was commented that the relative risk reduction in breast cancer mortality with mammography screening could be overestimated in RCTs, possibly because these studies were conducted before the advancement of certain treatments.
- The SEER data used does not clearly define the methods by which breast cancers were detected, which is a limitation of the U.S. data and may have implications for its use in a Canadian context.
Considerations for the Alberta Clinical Practice Guidelines as a model:
- For women 40–44, if they choose to start screening, they are not able to self-refer into a breast cancer screening program. They require a physician’s referral to help ensure that shared decision-making discussions have taken place.
- There are no specific recommendations for First Nations, Inuit, or Métis Peoples, but there are several projects in Alberta designed around reducing inequity in cancer screening.
- The age to start screening has been lowered to 45 years of age based on balancing the benefits and harms, however Alberta Health Services has yet to fully implement this change. Given that the USPSTF considered it had enough evidence to revise their guidelines for breast cancer screening to start at age 40, Alberta will continue to evaluate evidence as it becomes available for the Canadian context.
Tomosynthesis vs. mammography as screening modalities:
- It was suggested to use tomosynthesis instead of mammography for screening when possible, based on the increased cancer detection rate, although it was noted that the USPSTF did not find that tomosynthesis was superior to mammography and stated that either modality could be used.
- When comparing positive predictive value with cancer detection rates, it must be considered that detecting more cancers will also result in more call backs (i.e., an increase in potential false positives weighed as a harm). Based on U.S. data, tomosynthesis has a slightly higher detection rate than mammography.
- The increase in the call back rate using tomosynthesis appears to be dependent on the setting. For example, in Europe, there is a very low call back rate compared to North America where the call back rate is high using tomosynthesis.
- The Tomosynthesis Mammographic Imaging Screening Trial (TMIST) is looking at the effect of using tomosynthesis vs. mammography on incidence of advance and aggressive cancers (most likely to be lethal). This work is ongoing.
2.2 Stakeholder Perspectives – Gaining an Understanding
This panel showcased the experiences and perspectives of a range of stakeholders on breast cancer.
2.2.1 People with Lived Experience
Presented by Ms. Michelle Audoin (Uncovered: A Breast Recognition Project)
The panelist presented her lived breast cancer experience as a Black woman.
Key highlights of the presentation include:
Ms. Audoin talked about her first benign breast tumour removed from her right breast at age 14, and the fact that the scar was a source of shame and a constant reminder. She also spoke about how she was not given any information about breast health from her doctors at the time and had to learn how to perform self breast examination on her own. She was not advised of her high breast density until many years later when she received a breast cancer diagnosis.
As a young Black girl navigating the healthcare system, she did not feel represented in the images and stories about breast cancer and risk. She also had needs and concerns that were not addressed. She is currently living with stage four breast cancer.
Uncovered – A breast recognition project:
One of Ms. Audoin’s concerns was the need to see images of Black women and specifically breast reconstruction on women of colour, including information on how best to manage mastectomy scars. The fact that this information was non-existent led her to create Uncovered. It is the first of its kind of resource that has been created in collaboration with Rethink Breast Cancer. It was brought to life after years of Ms. Audoin journaling on her frustrations about not feeling seen and heard – and the lack of lack of culturally relevant and diverse images of breast cancer – within the healthcare system.
Uncovered has filled this gap and created a safe space for Black, Indigenous women and all people of colour to share their breast cancer stories, their experiences with the healthcare system, and, most importantly, providing access to diverse images of scars and breast reconstruction (available online for free). It is also a call to action in the form of a wish list for healthcare providers and community agencies to end disparities with easily accessible and actionable items.
Key takeaways:
- It is possible to provide world-class cancer care and still have unmet needs.
- There are many barriers to health equity that need to be addressed.
- There was not a resource or collection of images that showed scarring and breast reconstruction options on Black skin. Uncovered is now bringing awareness to this.
- Creating resources for and honouring the experiences of non-White racialized groups builds community and can lead to more positive interactions with healthcare providers.
Barriers and gaps in screening care:
- Lack of education and awareness for young women about risk factors and lifestyle
- Assumptions that being younger and nursing children are acceptable explanations for refusing screening or dismissing concerns
- Assumptions that individuals with breast health concerns have complete and accurate family histories to rule out a hereditary component
- Lack of Canadian race-based data
- Community engagement
Presented by Ms. Vicky auf der Mauer (Indigenous Primary Health Care Council and Aboriginal Legal Giiwedin Anang Council)
The panelist presented her lived breast cancer experience as an Indigenous woman.
Key highlights of the presentation include:
All of the concerns and frustrations related to disparities and lack of representation in the healthcare system for people of colour apply to Indigenous communities as well. Ms. auf der Mauer was featured in Uncovered, which was a transformational experience for her. It was the first time she had witnessed Indigenous representation for breast cancer.
In October 2019, Ms. auf der Mauer was diagnosed with breast cancer. As an Indigenous woman, she had no intention of utilizing Western medicine to treat the disease due to the perspective of it being an unwell, imbalanced, and sick system. She captured her experience by video and shared it in real-time.
When receiving her diagnosis, she felt pressured to schedule surgery right away. Her perception changed once she was matched with an Indigenous navigator – an Indigenous person who had lived experience of having the same diagnosis. Speaking with her, Ms. auf der Mauer became more receptive to the Western system although she still desired taking traditional medicines.
In 2021, Ms. auf der Mauer had two surgeries and completed radiation treatments as prescribed. Her decision-making process, supported by an Indigenous navigator, allowed her to come to peace with her decision to go ahead with treatment through the Western healthcare system. She feels that she found her voice during this process.
2.2.2 Canadian Breast Cancer Screening Network
Presented by Mr. Gregory Doyle (Canadian Breast Cancer Screening Network)
The panelist, who is Chair of the Canadian Breast Cancer Screening Network, titled his presentation "Noise, Evolution, and the Beauty of Hindsight," which showcased perspectives from the CBCSN.
Key highlights of the presentation include:
Hosted by the Canadian Partnership Against Cancer (CPAC), the Canadian Breast Cancer Screening Network is a community of practice with pan-Canadian membership (provincial/territorial breast cancer screening programs, PHAC, CPHA, and professional associations) that works together to ensure high quality, equitable, and culturally safe breast cancer screening in Canada. Members of the Network recognize the variation of breast cancer screening programs across different provinces and territories.
More specifically, current challenges that are being discussed by the Network include:
- Health human resources
- Quality assurance in screening
- Population screening and primary care shortage
- High-risk breast cancer screening
- The potential and challenge of Artificial Intelligence (AI)
The CBCSN adheres to the World Health Organization (WHO) Principles of Population Screening as criteria for the assessment of evidence on benefits, risks, and costs of cancer screening. The following two principles are to be highlighted for breast cancer screening guidelines:
- There should be a suitable test or examination that has a high level of accuracy.
- There should be an agreed policy on whom to screen as patients.
The evolution of breast cancer screening guidelines and programs:
Over the past 40 years, the CTFPHC’s guidelines have evolved from recommending annual mammography and clinical breast exam (CBE) for women aged 50–59 and not screening women aged 40–49 (with no recommendation for self breast examination [SBE]), then expanding the screening age to 50–69 and eventually to biennial screening from age 50–74 and informing women from the age of 40 about the benefits and risk of screening and recommending against CBE and SBE.
Breast cancer screening programs implemented in the late 1980s and 1990s have evolved with the changing guidelines with variation across the country in the age to start screening. Today, CBE is not offered as a screening modality and the teaching of SBE is no longer offered by health human resources. It was noted that it can be very challenging to implement shared decision-making (SDM) due to lack of access to primary care providers in 2023.
Updating the current breast cancer screening guidelines:
Key issues around the update of the breast cancer screening guidelines were presented, including the reliance on older RCTs, perceived bias toward harms, screening program data not being accepted as evidence, and legitimacy of the Canadian National Breast Screening Studies (CNBSS).
For the guideline update, it is recommended that the evidence base be expanded, screening program evidence be recognized, a diversity of voices be included, and that recent evidence be considered, such as improvements in breast imaging, technology, and breast cancer screening program delivery, and the use of up-to-date models.
In 2001, the CTPHC recommended that “Upon reaching the age of 40, Canadian women should be informed of the potential benefits and risks of screening mammography and assisted in deciding at what age they wish to initiate the manoeuvre.” Hindsight indicates that this may have been an appropriate way forward.
2.2.3 Family Physicians
Presented by Dr. Aisha Lofters (Women's College Research Institute)
The panelist delivered a presentation titled "Primary Care Perspectives," sharing her viewpoint as a primary care professional, which included a focus on health equity.
Key highlights of the presentation include:
Although there are breast cancer screening guidelines, there are still many questions that come up for physicians that can lead to inequitable care for patients, especially marginalized or underserved women or women facing socio-economic challenges. Hypothetical case studies were used to discuss equitable and clinically appropriate access to breast cancer screening.
Important considerations include:
- Many people simply do not know about their family medical history because detailed family history is not available for them. For instance, at the Women's College Hospital (Toronto, Canada), there is currently work being done in partnership with a local synagogue to help Ashkenazi Jewish families gain information on their family history (largely unavailable information due to the Holocaust).
- It has often happened that women in their 40s are told that they do not need a mammogram, including patients with symptoms or with lumps, because they have not yet reached the age of 50.
Challenges in primary care:
- There are still many unknowns in the breast cancer screening space.
- Breast cancer screening guidance is challenging for busy and often overworked primary care clinicians to navigate.
- Ensuring that SDM is properly occurring in primary care is complex.
- Ensuring that truly equitable access to screening and SDM around screening is challenging.
2.2.4 Imaging Professionals
Presented by Dr. Jean Seely (Breast Imaging Section, The Ottawa Hospital)
The panelist, an imaging professional, shared her perspective during a presentation titled "Clinical Perspectives on Breast Cancer Screening Guidelines and/or Practice in Canada Today."
Key highlights of the presentation include:
Detection of breast cancer and outcome:
The proportion of breast cancers diagnosed by screening – not by symptomatic presentation (e.g., palpable lump, axillary mass, suspicious nipple discharge) – has decreased since 2016. A retrospective study at a tertiary-referral centre in 2016 found that screen detection vs. symptomatic detection in women 40 years and older had significantly lower odds of having advanced breast cancer and significantly lower odds of death at 4-year follow-up. Also, symptomatic cancers had 6.5 times higher odds of having advanced cancer compared to a lower stage.
Screening and survival:
In Canada, breast cancer represented 14% of all cancer deaths in women in 2022. Earlier diagnosis of breast cancer (and earlier stage) can lead to improved survival, decreased morbidity, and lowered cost of treatment. The stage at which a breast cancer is diagnosed correlates directly with survival:
- Stage I: all women survive to 5 years
- Stage II: 93% of women survive to 5 years
- Stage III: 28% of women do not survive to 5 years
- Stage IV: 78% of women do not survive to 5 years
Incidence and race:
The age of peak incidence of breast cancer varies by race and ethnicity. When compared with Black, Indigenous, Chinese, South Asian and Filipina women, only White women have a peak incidence after the 50–59 age group. This means that waiting to start screening at age 50 could impact these women differently.
Canadian National Breast Screening Studies:
The 2018 CTFPHC’s recommendations on screening for breast cancer in women aged 40–74 years who are not at increased risk were based on evidence coming from RCTs and data from women who were invited to screen only. These guidelines were informed by the Canadian National Breast Screening Studies (CNBSS) (I and II) studies that, apart from being 60 years old, are flawed by inclusion of people with symptoms of cancer, poor quality mammography, and high proportion of advanced cancer in the screening arm.
Organized screening programs on breast cancer stage at diagnosis for women aged 40–49 and 50–59:
In part because of the influence of the CNBSS in Canada, many provinces do not include women in their 40s in screening programs and only start at age 50. In a large study (2022) of 55,000 women with a breast cancer diagnosis in Canada, the distribution of breast cancer stage at diagnosis was significantly different between women in their 50s- and 40s not targeted by screening programs. Except for stage IV, women in their 40s had breast cancer diagnosed at significantly later stages than those in their 50s. Significantly higher proportions of stage I breast cancer were found in the screening jurisdictions, compared with those that did not include the women in their 40s. Those who did not include them had proportionately more breast cancer diagnoses at more advanced stages: Stage II (43.7% vs. 40.7%), Stage III (18.3% vs. 15.6%) and Stage IV (4.6% vs. 3.9%). There was also a significantly lower proportion of stage I breast cancer in women in their 50s (44.5% vs. 46.8%) and significantly higher proportions of Stage II (37.2% vs. 36.0%) and Stage III (13.6% vs. 12.3%).
Breast cancer screening on net survival in women aged 40–49:
A study (2022) looking at 10-year net survival in over 50,000 breast cancer cases from 2002 to 2007 from differing provincial and territorial screening policies found that:
- 10-year net survival was significantly higher in 40–49 living in screener jurisdictions compared with others (1.9% absolute increase in net survival for 40-49).
- Incidence-based mortality ratios significantly decreased for ages 45–49 in screener jurisdictions (rate ratio 0.89; 95% confidence interval, 0.81 to 0.98).
- Survival did not differ for women in their 50s.
- Survival significantly correlated with provincial biennial screening participation.
- Breast cancer incidence was the same in jurisdictions that are screening vs. not screening those 40 to 49 years old.
- Significantly higher number of breast cancer cases in women in their 50s living in jurisdictions that do not screen those 40 to 49 years old.
Breast cancer was responsible for 90.7% of deaths in diagnosed women aged 40–49. The impact on mortality decreased with age (i.e., 80.9% for 50–59; 61.5% for 60–69; 48.3% 70–74). In older women, the concept of overdiagnosis (i.e., the detection and treatment of breast cancer that would not cause death) is most likely a factor with other competing causes of death.
The true cost of breast cancer treatment:
A Canadian study (2023) aimed to determine the true cost of breast cancer treatment using Activity-Based Costing (ABC) to determine a per-case cost by stage and molecular subtype. Expert input from diagnostic imaging, pathology, surgery, radiation oncology, medical oncology, pharmacy, cancer centre administration and modelling were used. The study also proportionally integrated the range of multidisciplinary evidence-based patient and provider treatment options (i.e., lumpectomy vs. mastectomy) to yield a single case cost for the total duration of treatment per case. The study concluded that the 26,175 breast cancer cases in 2017 cost $1.8 billion in total to treat (not including the cost of treating recurrent disease). For treatment by stage, it was found that costs increase exponentially by stage. Specifically:
- Stage IV was 36 times more costly than DCIS
- Stage IV was 11 times more costly than stage I
- The cost for one case of stage IV was over $500K
- The cost for a recurring case would be the original stage (I, II, or III) cost plus the cost of treating stage IV
Current wait times for follow-up/treatment at The Ottawa Hospital:
- From screen detection to surgical pathology results, it is a 44–48 week wait.
- From referral for symptom of breast cancer to pathology, it is a 34–38 week wait.
Presentation conclusions:
- There are a greater proportion of advanced stage cancers in women in their 40s and 50s as well as an increased incidence of breast cancer in women in their 50s in jurisdictions that do not screen women in their 40s.
- There is an increased survival and decreased mortality rate in women 40–49 years old diagnosed with breast cancer in screening jurisdictions.
- Women of non-White ethnicity have an earlier peak incidence of breast cancer and are disadvantaged by current screening guidelines.
- Cost-effectiveness of screening must include current costs and changes in stage distribution and incidence with screening as there is an exponential increase in cost of treatment by stage.
2.2.5 Roundtable Discussion Summary
This section presents a summary of key discussion items raised by participants and additional information provided by panelists during the roundtable session that followed the presentation by the panelists.
Accessibility:
- New breast cancer screening guidelines should consider and, if possible, provide guidance around accessibility issues based on the current primary care crisis and remoteness impacting access.
- Establishing close connections and partnerships is essential for improving screening rates in Indigenous and minority communities (e.g., Ontario screening programs have built relationships with Indigenous leaders, Indian and Chinese community leaders). Community engagement and collaboration with marginalized groups can increase awareness and improve accessibility to screening programs.
- There is a lack of experienced radiologists for breast cancer screening as well as a low retention rate for radiologists and mammography technologists in rural areas in Canada. As an example, a digital imaging centre was installed in the James Bay region to provide breast cancer screening access to rural communities living nearby, but the images were sent to Timmins, Ontario for interpretation as a workaround solution for the lack of local radiologists.
- Outreach and education are both needed to foster earlier access to high quality screening. This is done by encouraging women to make informed decisions about participating in screening programs, as well as developing ways to overcome economic and logistic hurdles to ensure appropriate clinical workup of screening findings and access to high quality treatment once diagnosed (e.g., offering breast cancer screening clinics on evenings and weekends).
Primary care crisis:
- One barrier to access breast cancer screening programs is the lack of a primary care provider. With many Canadians lacking a family physician, the need for a requisition for some to be screened has become a barrier. In some provinces/territories, self-referral is a tool to bypass this challenge.
- As an example on how to overcome the lack of access to primary care, a new program was started in the Champlain Region of Ontario called “Champlain Screening Outreach.” The program relies on a nurse practitioner as a screener who can offer the four screening programs (cervical, breast, lung, and colorectal) to anyone without a family physician.
- There is also a need to move away from siloed models of care to improve access. For instance, in a team-based model of care, patients can access primary care from a family physician or nurse practitioner, but the benefit to the patient and the system comes from the larger team. This includes interprofessional healthcare providers, including nurses, social workers, dietitians, pharmacists, and many others who work as a team to meet a patients’ health and social needs (including their mental health needs). The requisition process for areas where self-referral is not permitted could be expanded.
Remoteness:
- The primary care crisis is currently disproportionately impacting the access for many First Nations families living in rural areas. Currently, virtual services at First Nations Health Authority (FNHA) in British Columbia are used when needed but access is an ongoing issue.
- In the Northwest Territories, communities that have limited access to primary care providers are run on community health nurses to access breast cancer screening. These nurses can complete screening requisitions, which has been successful in this region. It remains a challenge for those residing in main hubs to either find a primary care provider to complete screening requisitions or to enter screening programs through self-referral.
- In Alberta, the Screen Test Mobile Clinics program offers mammography testing in rural areas on a regular basis.
Age:
- For many women aged 40–49 in provinces/territories that require a requisition, when deciding to get screened, they can be denied a requisition by their family physician (based on the guidance to start screening at age 50). Both a physician’s personal interpretation of the age recommendation to start screening as well as the need for a physician’s referral in certain jurisdictions are barriers to access screening programs across Canada.
- It was suggested that the recommendation to start screening at 50 years of age could create an unconscious bias among primary care that breast cancer does not happen earlier. This could make primary care providers are more reluctant to work up younger women who present symptomatically.
- There was a suggestion that all women in Canada be able to self-refer for annual screening starting at age 40.
All-cause mortality as a study endpoint:
- Several researchers have suggested that all-cause mortality is not a useful measure of impact for any specific cancer intervention. For example, eliminating all breast cancer deaths would only have a 3% effect on all-cause mortality in modelling (which is almost impossible to observe in a study population).
- For women in the 40–49 age group, it was suggested that the focus should be on breast cancer mortality as an outcome since these women are more likely to die from breast cancer than other causes when compared to older age groups.
- All-cause mortality does have its value to balance association and causation (including complications and risks). In overall analysis, disease specific mortality is considered as well as all-cause mortality.
- It was suggested that enhanced collaboration with CanRisk / Statistics Canada (StatCan) / the Cancer Registry teams could help fill data gaps by using current screening data in relation to all-cause mortality.
Demographic / Race-based data gaps:
- In Canada, we rely heavily on U.S. data for most decisions as we have not historically collected race-based/ethnicity or other equity-related data for any disease. The consequences of applying U.S. data to the Canadian context is unknown. One major consideration is the genetic difference between American Black women (mostly having African ancestry) and Canadian Black women (having African, Caribbean, etc., ancestries).
- The issue of poor breast cancer outcomes in Black women is a complex issue that is only partly associated with genetic factors. More research is needed to understand the determinants of health at play.
- Nunavut cannot be included in provincial/territorial data analysis because it does not have an official screening program, which is a major gap for the Inuit community.
- Preliminary data in Canada does show a different distribution among White women and women of colour (e.g., in peak age of incidence).
- Although many health institutions have started gathering race-based data, this needs to be done across Canadian jurisdictions in a more consistent manner for breast cancer screening and uptake.
- When interpreting data on marginalized communities, we must consider the engagement and barriers with the healthcare system as context. For example, a newcomer with a language barrier may not fully understand the breast cancer screening process and may be reluctant to participate. Also, other factors should be considered, like the time since arrival in Canada.
Higher mortality in Black women
- U.S. modelling results indicated a reduced mortality rate for all women and an even greater reduction for Black women when screening starts at 40 years old (and continues biennially up to age 74). Screening alone is not enough as there are inequities along the entire breast cancer care continuum. Data also reveals that screening rates are very similar in White and Black women indicating that there are differences in follow-up care.
- The USPSTF has partnered with African American organizations and stakeholder groups to disseminate recommendations among the Black community in the U.S. to help with inequities and accessibility.
- More research is needed to understand why Black women tend to have more aggressive cancers – whether there are environmental factors that make them more pre-disposed to more aggressive cancers or make them more likely to die from breast cancer (e.g., systemic racism).
- It remains challenging in Canada for advancing research on Black women as Black communities are diverse and dispersed across the country in different jurisdictions with little race-based data available.
Risk-based screening:
- It was suggested that women who are considered to have a higher-than-average risk should be screened according to their risk level. For instance, women at higher than 20–25% lifetime risk could be screened annually with mammography and MRI.
- Some have suggested that women be offered a breast cancer risk assessment at ages 25–30.
- Younger women tend to have more aggressive breast cancer subtypes and have poorer prognosis. It was suggested to screen women who are more likely to have aggressive types of cancer and screen them more frequently than the general population.
- It was commented that annual screening would save the most lives from breast cancer for women who are premenopausal (i.e., under the age of 50). A study (not yet published) on molecular subtypes and age of breast cancer diagnosis does show a potential benefit of screening mammography for various subtypes when comparing jurisdictions that screen women in their 40s vs. those that do not.
Breast density:
- Breast density can only be revealed during a mammogram; therefore, a baseline screening mammogram for women to know their breast density prior to age 40 could be beneficial.
- It was suggested that women should be informed of their breast density in mammogram results (e.g., by letter in the mail). Currently, some provinces are mandated to do so while others are not.
- It was commented that women with dense breasts should be provided with supplemental screening (ultrasound or MRI) depending on their lifetime risk, although current evidence is insufficient to recommend this.
Cultural safety:
- Many people do not want to be screened due to experiences of trauma and racism. Cultural safety should be included in all breast cancer screening guidelines to address this inequity.
- As an example of national guidelines with a Cultural Safety section, the following was provided:
Canadian Guideline on the Management of a Positive Human Papillomavirus Test and Guidance for Specific Populations - New Canadian guidelines must reflect all Canadians (and not only White women).
- When engaging Indigenous patients, there is often little understanding of screening vs. diagnostic tests as well as an overall mistrust in the healthcare system. It is important to offer communication materials in appropriate dialects and languages, using more images than words for pertinent information to be understandable.
CNBSS data, and current guidelines:
- There is a wide spectrum in quality of research studies and some believe there are major flaws in CNBSS (I and II). It was suggested that the CTFPHC should heavily discount the estimates of these studies for mortality reduction and over detection.
- It was noted that the CNBSS showed an excess of advanced cancers in the screening arm, which has been suggested to be due to flaws in randomization, as well as very poor image quality as documented in the 1990s.
Variation in screening practices:
- CBCSN is a community of practice of provincial/territorial breast cancer screening programs and professional associations that work together to ensure high quality cancer screening in Canada. It does not set provincial screening policy, nor does it issue guidelines.
- Provincial/territorial population cancer screening programs consider guidelines when implementing screening for breast, cervical, colon and lung cancer. Screening programs may follow Canadian guidelines, U.S. guidelines, WHO guidelines, or they can develop their own (e.g., Alberta CPG), which leads to variations in screening practices across the country.
- Dense Breasts Canada keeps an up-to-date chart of all variations across the country in screening practices. The following factors create significant jurisdictional disparities and inequities that give some women a chance to find breast cancer earlier than others depending on where they live. For example:
- Some provinces are considering lowering the screening age to 40 years old.
- Ontario is set to publish their final recommendation on supplemental screening for category D (i.e., high breast density).
- In a few provinces, ultrasound is more easily accessible than mammograms and this needs to be investigated to improve access to breast cancer screening.
- Currently, only four provinces allow self-referral at age 40.
- Three provinces screen annually with one starting at age 45 and seven others offering annual mammograms to category D.
- Seven provinces allow women over 74 to self-refer.
- Although there is variation in practice when it comes to the age of when to stop screening, it was suggested that women should be allowed to continue being screened as long as they are in good health, with a life expectancy of at least 10 years.
- The positive predictive value is a useful measure as it allows to have a balanced outlook on recall rates in relation to the number of diagnosed cancers.
2.3 Research and Innovation for Advancing Screening Practices – Current Challenges
This panel discussed current challenges related to breast cancer screening practices.
2.3.1 Shared Decision-Making
Presented by Dr. France Légaré (Department of Family Medicine and Emergency Medicine, Université Laval)
The panelist delivered a presentation on shared decision-making (SDM), titled "Shared Decision-Making in the Context of Population-Based Screening Programs."
Key highlights of the presentation include:
What is shared decision-making and what it is not?
Shared Decision-Making (SDM) is a process in which clinicians and patients work together in making decisions about the patient’s health care. It relies on two major pillars – the evidence and what matters most to the patient – and can be fostered by patient decision aids (e.g., The Ottawa Personal Decision Guide). Such decision aids can help identify the decision to be made, discuss the options available, explore preferred roles, and assess as well as address decision-making needs.
SDM is a tool. The tool is not meant to be used with a consumer approach (i.e., using the tool like a machine that will spit out an answer). Research indicates that patients still want to be supported in reaching a decision. A decision-making tool is not meant to replace the clinician in the decision-making process. Such a tool also poses the risk of wrongly being used and should never be used to replace an entire decision-making process (i.e., it is meant to help the process).
Why it is relevant to making choices in population-based screening programs?
To make decisions, we rely on ethics. From a teleological perspective, we rely on concepts such as consequentialism, values, and virtue. For example, see the Quintuple Aim.
From a deontological perspective, we rely on concepts such as duty, right, and proceduralism. As an example, in the ‘Rights and Entitlements in Relation to Health Care – Federal Initiatives’, the Health Charter for Canadians outlines a substantial list of individual rights for users of the public health care system, including the right to be:
- Fully informed about one’s medical condition
- Advised of the available treatment options
- Involved in treatment decisions
The Cochrane Review of Patient Decision Aids Shared Decision-Making Tools and International Patient Decision Aids Standards 2023 update reported:
- An increase in the congruency between informed values and care choices
- A reduction in the proportion of undecided participants
- An increase in satisfaction with the decision-making process
- An increase in positive impact on affective-cognitive outcomes (i.e., anxiety)
- An increase in cost savings
- An increased benefit for disadvantaged groups compared to higher literacy or higher education groups
- A higher rate of satisfaction in clinicians toward their work
The pitfalls of SDM for breast cancer screening include lack of clinician-patient relationship and choice behaviour as an outcome (e.g., SDM may not increase screening uptake and could possibly decrease uptake).
The levers of SDM for breast cancer screening include partnerships and engagement of all stakeholders.
2.3.2 Risk-based Approach to Screening
Presented by Dr. Jacques Simard (Research and Innovation, Faculty of Medicine, Université Laval) & Dr. Anna Chiarelli (Ontario Health)
The panelists presentation was entitled “Implementation of risk-stratified breast cancer screening: Opportunities and Challenges.”
Key highlights of the presentation include:
Current challenges in breast cancer screening practices include:
- Current breast cancer screening recommendations assume all participants have the same risk level based on their age.
- Screening program participants do not receive any risk assessment or genetic testing (therefore their risk level is unknown).
- Only some individuals (e.g., those with substantial family and/or personal cancer history) are referred for genetic counselling and/or testing.
Emerging evidence suggests that personalized breast cancer risk assessment at a population level could guide screening recommendations.
Development of a framework to support implementation of a personalized risk-based approach to breast cancer screening has included:
- A cohort study: People ages 40–69 without breast cancer who had a mammogram in Ontario and Québec, Canada were recruited as part of the PERSPECTIVE I&I project.
- Data collection of risk factors, including entry questionnaire (family history, lifestyle, hormonal factors), saliva sample for genetic testing (Polygenetic Risk Score), and mammogram report (breast density category).
- Estimated 10-year breast cancer risk using the CanRisk prediction tool.
This study found that when screening based on multifactorial risk stratification level instead of age, family history, or Breast Imaging-Reporting and Data System (BIRADS) density alone, the higher-than-average and high-risk groups were found to be under screened (and average risk group was over screened based on family history and breast density only).
Drivers and challenges:
Implementing risk-based screening approach would allow for:
- Screening and follow-up to be personalized
- Participation and access to care to be improved
- Existing resources and infrastructures to be utilized
- Benefits to be improved and harms to be reduced
- Informed decision-making
Although having much potential in improving screening, the implementation of a risk-stratified breast cancer screening approach is also challenged by:
- Eligibility based on risk assessment
- Population delivery of risk assessment and communication
- Screening recommendations guided by risk level
- Healthcare system readiness for resources and costs
- Equitable access and new socio-ethical and legal policies
Future directions:
To move forward with risk-based breast cancer screening in Canada, we need to:
- Develop recruitment and data collection processes that minimize disparities in access to breast cancer risk assessment at the population level
- Develop a multifactorial breast cancer risk prediction tool that is validated in different populations and user-friendly for health care providers and participants
- Develop a risk-based screening implementation framework within Canada’s socio-legal environment and healthcare organization structures
2.3.3 Issues Related to Access, Outreach, and Equity
Presented by Dr. Juliet Daniel (Research and External Relations, Faculty of Science, McMaster University)
The panelist’s presentation was entitled “Research and Innovation for Advancing Breast Cancer Screening Practices: Current Challenges in People of African Ancestry.”
Key highlights of the presentation include:
Breast cancer is clinically classified into subtypes based on expression of receptors: estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor-2 (HER-2). Tamoxifen is the standard treatment for ER/PR positive cancers while Herceptin is the standard treatment for HER-2 positive cancer. For triple negative (i.e., cancers that do not express any of the mentioned receptors), there is no targeted treatment; therefore, it has a poor prognosis.
Triple negative breast cancer and disparities in outcomes:
There is a higher incidence of Triple Negative Breast Cancer (TNBC) in young Black and Hispanic women compared to White women. While socio-economic status can explain poor health and disease outcomes, it cannot account for the incidence rate of TNBC. In addition, racism trauma (including slavery, community violence, racial profiling, mass incarceration, and abuse) is now being considered as a social determinant of health.
Demographic health data:
Breast cancer is an emerging health crisis in Africa with 5-year survival rate below 50% (compared to 90% in USA). The estimated TNBC prevalence is 20% in non-Hispanic Black Americans, 14–17% in Caribbeans, and 15–80% in Africans.
In Canada, there is a lack of demographic health data, forcing most researchers to use data from the U.S. (with unknown consequences). Today, most Canadian hospitals and institutions have begun collecting demographic data, but this data is not yet available.
A Canadian study (2016) looking at screening rates by ancestry found that screening rates were lowest for those women with no care, with rates ranging from 5.3% for South Asian women to 21.5% for Caribbean and Latin American women. Among those who had physicians, rates were highest among those enrolled in Family Health Teams (FHTs) (64.6%), and lowest for those not in a group. For all groups, screening rates were higher than 60% for those enrolled in FHTs and Family Health Organization (FHO) / Family Health Networks (FHNs), except for South Asian women and Eastern European and Central Asian women. Although having internationally trained physicians, there were significantly lower chances of screening compared to having domestically trained physicians for the overall cohort – the differences were only significant for women from Caribbean and Latin American and East Asia and Pacific. Having a family physician who was from the same region as the woman significantly increased the chances of screening for South Asians, Eastern Europe and Central Asian, and Middle East and North Africa.
Another study (2018) looking at age standardized incidence rates and mortality by country found that Caribbean countries (Barbados and Bahamas), had much higher mortality rates, along with very high incidence rates, compared to the world population.
Kaiso – A multi-faceted transcription factor:
Kaiso is a transcription factor that regulates many biological processes such as cell proliferation, apoptosis (cell death), cell motility, and inflammation. It plays a role in multiple cancers. High Kaiso expression correlates with poor survival in breast cancer.
- In the lab, mouse xenograft in vitro studies showed that depleting Kaiso inhibits tumour metastasis in mice.
- In humans, the Women of African ancestry (WAA) TNBC project completed a pilot tissue microarray from ~50 Barbadian and ~40 Nigerian TNBC cases to determine the expression of Kaiso. It was found that high nuclear Kaiso expression correlates with African ancestry.
Recommendations:
- Increase representation of Black health professionals and researchers to diversify the workforce and engage in anti-racist activities.
- Improve Health and Cultural Literacy Cultural competency training of health professionals by offering cultural sensitivity training and tailored information for Black patients.
- Enhance screening programs and access to care.
- Partner with Black-led health initiatives in the community (e.g., Black Health Alliance, TAIBU, The Olive Branch of Hope Cancer Support Service).
2.3.4 Roundtable Discussion Summary
This section presents a summary of key discussion items raised by participants and additional information provided by panelists during the roundtable session that followed the presentation by the panelists.
Risk-based screening:
- Polygenetic Risk Score (PRS), based on common variants (i.e., polymorphisms) involved in breast cancer risk, is a major marker in risk assessment, especially for higher risk groups. Interestingly, the current CanRisk Questionnaire may identify some women as high-risk while their PRS indicates average risk (and vice versa). In micro-simulation using OncoSim, PRS was useful at identifying lower risk individuals.
- PRS allows to stratify risk categories (e.g., high-risk vs. very high-risk) where different preventive measures can be used (e.g., imaging vs. treatment).
Shared decision-making and decision aids:
- The decision to be screened or not should be based on a patient being well-informed of the benefits, limitations, risks, harms, etc. rather than a decision taken by the healthcare provider. The patient must be empowered, particularly those most marginalized, to make the decision best for them (i.e., an informed decision) and not to place any barriers in their way to build trusting relationships with healthcare.
- It is vital to be clear that the decision is ultimately up to the patient (i.e., to uphold self-determination as a principle) within regular circumstances. There are concerns of imbalance in power within SDM (e.g., in provinces/territories where requisitions are required, the decision lies with the referring physician).
- The decision tool for women aged 40–49 created by the CTFPHC for the 2018 breast cancer screening guidelines was partly informed data from the CNBSS trials. Many family doctors are familiar with and trust this tool, which is why it is still being used in primary care today. There is a need for a new tool or for this tool to be updated. This is especially important for contexts where some women ask their doctor to recommend a decision.
- The Ottawa Personal Decision Guide can be used for any type of decision to be made in health and social care.
Weighing benefits vs. harms for guidelines:
- New guidelines should make use of recent data regarding benefits and harms related to breast cancer screening, including related to how benefits (i.e., lives saved) compared to harms (e.g., false positives and overdiagnosis) are weighted. Morbidity should also be considered in addition to mortality reduction.
- Many patients report on the relative lack of importance of the harm of an abnormal recall as compared with the harm of a delayed diagnosis. Published evidence on how patients value outcomes should inform guidelines.
- There exists a perception that harms are perhaps weighed more heavily than benefits within breast cancer screening compared to other forms of cancer screening in Canada.
2.4 Research and Innovation for Advancing Screening Practices – Looking to the Future
2.4.1 Circulating Biomarkers
Presented by Dr. Scott Bratman (Princess Margaret Cancer Centre Research Institute)
The panelist’s presentation was entitled “Research and Innovation for Advancing Screening Practices – Circulating Biomarkers.”
Key highlights of the presentation include:
Overview of liquid biopsy cancer diagnostics:
A liquid biopsy refers to a blood sample taken to detect cancer-derived cells and DNA in the bloodstream. Circulating tumour DNA (ctDNA) can be used as a biomarker for cancer in the blood. It outperforms other circulating biomarkers for breast cancer:
- Circulating Tumour Cells (CTCs) are less sensitive
- Circulating proteins (like CA 15-3) are less specific
Cancer-derived DNA markers in ctDNA can be challenging to find, yet can be identified using:
- Tumour mutational burden
- Gene alterations
- Mutational signatures
- Epigenetic changes
- Viral sequences
ctDNA could become an integral component of personalized medicine across the entire cancer care continuum.
- Cancer detection, screening, or earlier diagnosis:
No tests are approved or funded. Although blood tests could enable simultaneous multi-cancer detection, studies are ongoing for both screened and unscreened cancers. - Molecular profiling or prognostication:
There are tests approved by the U.S. Food and Drug Administration for targeted therapy selection. Advanced stage cancers have higher levels of ctDNA, and studies show that we can avoid tissue biopsy. - Detection of residual disease, monitoring response, and monitoring clonal evolution:
No tests are approved or funded. There is emerging evidence supporting its use in colon, breast, and other cancers. There are many ongoing clinical trials on the matter.
Liquid biopsy for detecting early recurrence:
Current curative-intent treatments involve complex decisions for escalation or de-escalation of therapy. For example, after surgical and/or radiation treatment, one is faced with the decision to observe or continue with adjuvant therapy. Molecular Residual Disease (MRD)Footnote 3 detection could guide curative-intent treatment decisions. For instance, an MRD positive test would confirm the need for adjuvant therapy while an MRD negative test would confirm that observation is sufficient. Furthermore, ctDNA reflects MRD status and is strongly prognostic in colon, lung, head and neck, and breast cancers.
Liquid biopsy approaches to cancer screening:
When looking at current recommended cancer screening programs, their proven advantage is in the reduction in mortality for cervical, breast, colon, and lung cancers. Yet, current screening practices still have challenges and limitations, such as:
- Earlier detection does not always translate to reduction in mortality (e.g., in ovarian cancer).
- Existing approaches have high false positive rates and limited accessibility and adoption.
- Potential harms from screening include overdiagnosis, cost and complications from tests and workup.
Blood-based liquid biopsy cancer screening tests could possibly address the following challenges:
- 70% of all cancers are not detected by screening
- 70% of cancer-related deaths result from unscreened cancers
- Adherence rates of current screening programs are suboptimum
- Positive predictive value for current screening tests is less than 10%
Proof-of-concept for cancer screening of virally-driven cancers using liquid biopsy include Human papillomavirus (HPV) associated with oropharynx, cervix, and anogenital cancers, and Epstein–Barr virus (EBV) associated with nasopharynx, gastric, and lymphoma cancers. For example, a study (2017) using plasma EBV DNA to screen for nasopharyngeal cancer identified predominantly early-stage cancers with favourable survival. A RCT would be needed to prove reduction in late-stage cancer incidence as well as cancer-specific mortality.
The promise of liquid biopsy is the ability to leverage the bloodstream as a source of cancer signals from multiple tissues. Multi-cancer detection with blood-based tests has its benefits, including its scalability for population screening, possibility to simplify clinical care and encompassing rare cancers. As for single cancer detection, the benefits include faster development, more direct regulatory pathway, and already existing proven screening paradigms. In both cases, limitations include costs to develop tests and to do individual tests, cumulative false positives, complex development, regulatory pathways, and possible diagnostic odyssey.
Blood-based cancer early detection tests require performance attributes (i.e., high sensitivity for early-stage cancers, high specificity to minimize workups) and accessibility attributes (i.e., globally deployable via a single blood draw, efficient, cost-effective, and comprehensive). It also requires the following features: high accuracy for identifying cancer type and tissue of origin and the ability to monitor disease and reveal biology.
Epigenetic changes such as DNA methylation show promise for blood-based multi-cancer detection. ctDNA methylation assays can detect multiple cancers, but based on current published data, the sensitivity for breast cancer is too low for primary screening (i.e., 30.5% sensitivity). Breast cancer detection sensitivity seems to be stage and subtype dependent. The detection of methylated ctDNA is useful for prognosis in other cancers, yet not for breast cancer.
Presentation conclusions:
- The field of cancer diagnostics is undergoing a renaissance, driven by novel liquid biopsy technologies that molecularly profile ctDNA.
- Liquid biopsy approaches are being developed for single- and multi-cancer screening applications at population scale.
- DNA Methylation analysis has emerged as a leading approach for cancer early detection due to ability to simultaneously detect multiple cancer types.
- Sensitivity is currently challenged and detected cancers may be more aggressive.
- Integration with existing screening modalities is an area of ongoing research.
2.4.2 Artificial Intelligence
Presented by Dr. Nehmat Houssami (Breast Cancer Clinical and Population Health Research Group, Daffodil Centre [Australia])
The panelist’s presentation was entitled “Research and Innovation for Advancing Screening Practices: Looking to the Future – Artificial Intelligence.”
Key highlights of the presentation include:
The focus of this presentation was centred around the use of Artificial Intelligence (AI) for breast cancer population screening to improve workflow and potentially screening participants’ outcomes. AI could be applied for cancer detection (i.e., current risk) or to evaluate future risk. AI for breast cancer screening is currently defined as an ‘early use’ case where a collection of interrelated technologies is used to solve problems that would otherwise require human cognition. AI is a branch of computer science concerned with building machines and software capable of performing tasks that typically require human minds (e.g., perceiving, reasoning, learning, interacting).
Current evidence:
A scoping review (2019) on AI for early breast cancer detection revealed that most publications on this topic are mostly small retrospective studies with highly selected image datasets (i.e., high cancer %). Experts agree that such methodological concerns and evidence gaps limit the translation of AI into clinical breast cancer screening settings. The methodological limitations highlighted include:
- Use of non-representative imaging data (to train vs. to test)
- Limited validation in external datasets
- Few comparative data for AI vs. radiologists
A systematic review (2022) on the validation of AI algorithms for automated screening mammography revealed a small potential for diagnostic accuracy improvements. Studies on this topic still suffer from risk of bias and applicability concerns, including inadequate ascertainment of outcomes. Experts agree that the quality of studies needs improvement.
A retrospective cohort study (2023) looked at 109,000 consecutive screening exams from November 2015 to December 2016 in women aged 50–74 using the BreastScreen AI software (complete 2-year follow-up and linkage with cancer registry to ascertain interval cancers). It was found that AI did not perform as well as radiologists at prospective (pre-defined) threshold:
- AI sensitivity (67%) was similar to radiologists’ (68%)
- AI specificity (81%) significantly lower than radiologists’ (97%)
This study also revealed that the proportion of screen-detected cancers that were AI-positive was 77% and the proportion of interval cancers detected by the AI was 37%. A simulated double-read (i.e., radiologist + AI reading) was also performed and it was found that the retrospective design could not quantify the potential cancer detection rates due to limitations in analytic arbitration. These results confirm the need for prospective trials.
A clinical safety analysis study (2023) compared Mammography Screening with AI (MASAI) compared AI-supported screen reading vs. standard double reading. The trial recruited in 2021-2022 from four screening sites in the Swedish Screening Program using prespecified safety analysis (80,000 screens) for detection metrics where the primary endpoint was interval cancer rate (100,000 screened participants with at least a 2-year follow-up). This AI intervention resulted in higher recall rate and cancers found (as well as a higher cancer detection rate) while having 44% less screen-readings. The deep learning-based CAD system (Transpara v.1.7) was used to:
- Pre-sort and categorize mammograms by current cancer risk
- Detection by marking for calcifications and soft tissue lesions
A prospective, population-based, paired-reader, non-inferiority study (2023) recruited in 2021–2022 during routine mammography screening in Sweden. The study was based on 55,581 screens using Insight MMG AI system (v1.1.6; Lunit, South Korea) and design to have double reading plus AI reading followed by consensus meeting for discordance. It was found that double reading by one radiologist plus AI was non-inferior for cancer detection compared with double reading by two radiologists. Also, the study revealed a higher abnormal interpretation rate for AI resolved at consensus meetings.
AI for breast cancer risk screening:
AI for breast cancer risk prediction is an emerging area of research in which the extent and quality of evidence is not yet well developed. The various risk factors that drive an individual’s risk of developing breast cancer should be considered in risk estimation and include personal and lifestyle characteristics, reproductive and hormonal factors, familial and generic factors, and mammogram-derived information.
Is AI for breast cancer screening acceptable to the population served?
A study on Australian women’s judgments about using AI to read mammograms was conducted by running eight online dialogue groups of women aged 50–74. The two main questions discussed were:
- What is most (least) important in deciding to implement?
- What would you tell screening program?
Feedback was mainly positive; however, two issues were raised:
- Performance and quality assurance (i.e., AI should only be introduced when this makes performance of screening better than status quo).
- Experts remaining central actors (i.e., radiologists should remain responsible – to support explanation of outcomes, accountability, quality assurance – since radiology expertise is seen as a valuable resource).
Presentation conclusions:
- The evidence base for AI for population breast cancer screening now includes two prospective clinical trials indicating that AI is capable of early detection yet the exact pathway to use AI in mammography screening is an area of ongoing research (screening program vs. practice-based prospective trials).
- AI will reduce screen reading volume for programs that use double reading.
- The impact on interval cancer rates, long term outcomes (i.e., mortality and overdiagnosis) is unknown.
- AI for breast cancer risk assessment and prediction is an emerging area of research.
- Understanding women’s perspectives on the use of AI for mammography screening is important.
2.4.3 Roundtable Discussion Summary
This section presents a summary of key discussion items raised by participants and additional information provided by panelists during the roundtable session that followed the presentation by the panelists.
Blood tests for screening:
- Sensitivity of breast cancer detection is currently low as well as it being stage and subtype dependent. There is likely lead time in comparison to medical imaging where ideally cancers would be seen earlier with blood tests (possibly with high sensitivity and reduced specificity as a pre-screen).
- There is no data on lead time for ctDNA, but if we extrapolate from MRD, there is more evidence that the lead time seems to be about 3–9 months prior to emergence of imaging or other clinical findings of cancer. This opens the door to earlier intervention or what is known as ‘interception’ – adjuvant therapies to bring patient from MRD positive to MRD negative. Trials on this topic are ongoing.
- Blood tests may identify cancers that are not identified by other means and/or cancers that are not presenting any clinical issues, which raises the question of how blood-based detections should be handled (i.e., with treatment or surveillance only).
- The specificity (~99.5%) and sensitivity (~30%) of breast cancer ctDNA blood tests could potentially be manipulated (i.e., to boost sensitivity and lower specificity) to act as a pre-screen or screening test. As a comparison point, mammogram specificity is ~92%. The need to keep high specificity is to avoid diagnostic dilemmas (and potential costs associated with investigating false positives). This is a potential avenue for research.
- Given that Triple Negative Breast Cancer (TNBC) occurs more commonly in younger women, with worse clinical outcome than ER+ breast cancer, circulating methylation assays might be useful for early detection for this population. So far, data suggests higher accuracy for detecting ER-negative, TNBC, as well as HER2+ subtypes.
- There is currently an ongoing RCT in the UK looking at the reduction of late-stage diagnosis as an endpoint using blood tests (results not yet available).
Artificial Intelligence (AI) in breast cancer screening:
- Current data strongly suggests a role for AI in identifying interval cancers. Other possible roles include triage:
- Identifying mammograms that are evidently negative that they do not require a radiologist reading; or
- Determining which women might benefit from supplemental or alternative screening modalities (i.e., other than mammography).
- As AI tools improve, their accuracy might increase so that AI-assisted mammogram readings and risk prediction might become more useful in the future. Yet, their performance will always need to be examined in a prospective or randomized controlled trial. Today, based on prospective data available, AI tools for breast cancer screening is ready for further investigation.
3.0 Roundtable Discussions
3.1 General Discussion Highlights
Education and awareness:
- Breast cancer screening programs are a great tool for raising awareness among the general population. It could be an opportunity to also provide information on harms (anxiety and worry) related to possible recalls/false positives.
- Women in Canada should be better educated on what to ask their primary care providers, what to look for when it comes to symptoms or changes in their breasts, so they can advocate for themselves at a younger age.
- Group education sessions and more flexible screening times (i.e., evenings and weekends) should be leveraged to improve screening participation and help women better understand the benefits and harms of screening.
- Breast cancer screening guidelines are specifically designed to guide healthcare providers in their approach to asymptomatic patients. It is important to note that these guidelines do not focus on the clinical assessment of patients with signs or symptoms. Efforts should be made to clarify the distinction between screening guidelines for asymptomatic individuals and diagnostic assessment for symptomatic patients. This clarity is crucial to avoid confusion for both patients and healthcare providers.
- There tends to be more discussion about screening imaging and less about imaging for diagnosis and the difference between the two. At times, individuals with symptoms receive guidance that is intended for asymptomatic persons. As described above, more education for clinicians and patients is required in this area.
Stakeholder Final Reflections
At the end of the event, there was a final roundtable discussion on breast cancer screening that was guided by the following questions:
- Reflecting on the presentations, what message(s) do you want different stakeholders, including Canadian Task Force on Preventive Health Care (CTFPHC), to hear?
- What current or future challenges and opportunities do you see as being of highest priority and what actions do we need to take to move forward on them?
Key highlights include:
- It was noted that there are now some study results available around the stage distribution and 10-year net survival with some provinces/territories starting to screen at 40 years old vs. 50 years old. Some feel that these (and other) Canadian-specific results should weigh more heavily than randomized control trial results available (domestic or abroad) to update breast cancer screening guidelines.
- Potential benefits of expanding breast cancer screening in Canada must be considered in the guidelines. Not including potential benefits due to the lack of recent RCT results as evidence would pose a risk for many women. It should also be noted that older RCTs do not account for advancements in modern imaging technology or treatment.
- It is unlikely that there will be new trials on breast cancer screening but there are real world data and epidemiological trend data that should be considered. Guidelines need to be evergreen and dynamic instead of having periodic updates to be more responsive to evolving evidence.
- Self-determination and cultural safety are two critical principles to be embedded and built into the guideline recommendations.
- The CTFPHC should be transparent and clear in weighing evidence on benefits (e.g., lives saved) and harms (e.g., false positives and overdiagnosis). Also, the effects of morbidity associated with treating advanced cancers should be included when weighing benefits and harms.
- RCTs conducted in the 1960s and 1980s (i.e., CNBSS I and II) were conducted prior to the use of Tamoxifen (in 1984), which is now a standard treatment for breast cancer. Therefore, this data is not reflective of modern imaging and current treatments.
- Non-White women have different rates of aggressive cancers and there is a need for race-based data to have a better understanding of how screening could help disparities in clinical outcomes.
- The CTFPHC needs to evaluate available race-based data for breast cancer screening and could help indicate where Canadian data might be lacking (e.g., Black women’s mortality from breast cancer in Canada). Also, it should aim to create and foster partnerships with minority communities and marginalized groups for input on guidelines.
- There are multiple systemic issues that create inequitable access to screening, diagnosis, and treatment of breast cancer for Indigenous women, particularly Inuit women, in Canada. These communities have a rising incidence of breast cancer. Disparities in determinants of health include income, education, housing, and social inequities that are associated with higher-grade breast tumours, later stage at presentation, and higher rates of breast cancer mortality.
Appendices
Appendix A – Event Program
Day 1 – Tuesday 26 September 2023
11:00–11:05
Welcome – Julie Desmarais (Facilitator)
11:05–11:10
Algonquin Knowledge Keeper Opening – Monique Manatch (Knowledge Keeper)
11:15–11:25
Opening Remarks – Nancy Hamzawi (Executive Vice-President, Public Health Agency of Canada)
11:25–11:35
Overview of event and review of objectives – Julie Desmarais (Facilitator)
11:35–12:35
Setting the Stage – Breast Cancer Screening Guidelines in Canada and Abroad
This panel will showcase the experiences of groups developing breast cancer screening guidelines in Canada and abroad including presentations from the:
- Canadian Task Force on Preventive Health Care
(Drs. Guylène Thériault & Ahmed Abou-Setta, Co-chairs) - U.S. Preventive Services Task Force
(Dr. Wanda Nicholson, Vice-Chair) - Alberta Health Services
(Mr. James Newsome, Lead, Program Innovation & Integration)
12:35–13:30
Roundtable Discussion
13:30–14:00
Break
14:00–15:00
Stakeholder Perspectives – Gaining an Understanding
This panel will showcase the experiences and perspectives of a range of stakeholders on breast cancer screening including presentations from:
- People with lived experience
(Ms. Michelle Audoin, creator of Uncovered: A Breast Recognition Project & Ms. Vicky auf der Mauer, Knowledge Keeper, Indigenous Primary Health Care Council and Aboriginal Legal Giiwedin Anang Council) - Canadian Breast Cancer Screening Network
(Mr. Gregory Doyle, Chair) - Family physicians
(Dr. Aisha Lofters, Family Physician and Scientist, Women's College Research Institute) - Imaging professionals
(Dr. Jean Seely, Head, Breast Imaging Section, The Ottawa Hospital)
15:00–15:25
Roundtable Discussion
15:25–15:30
Closing Remarks for Day 1 – The Honourable Ya'ara Saks, Minister of Mental Health and Addictions and Associate Minister of Health
Note: All times are Eastern Daylight Time.
Day 2 – Wednesday 27 September 2023
11:00–11:02
Welcome – Julie Desmarais (Facilitator)
11:02–11:10
Opening Remarks – Nancy Hamzawi (Executive Vice-President, Public Health Agency of Canada)
11:10–12:15
Research and Innovation for Advancing Screening Practices – Current Challenges
This panel will discuss current challenges related to breast cancer screening practices, including presentations on:
- Shared decision-making
(Dr. France Légaré, Family Physician; Professor, Department of Family Medicine and Emergency Medicine, Université Laval) - Risk-based approach to screening
(Dr. Jacques Simard, Vice-Dean, Research and Innovation, Faculty of Medicine, Université Laval & Dr. Anna Chiarelli, Senior Scientist, Ontario Health) - Issues related to access, outreach, and equity
(Dr. Juliet Daniel, Cancer Biologist and Associate Dean of Research and External Relations, Faculty of Science, McMaster University)
12:15–13:00
Roundtable Discussion
13:00–13:30
Break
13:30–14:30
Research and Innovation for Advancing Screening Practices – Looking to the Future
This panel will discuss future research foci to advance breast cancer screening practices, including presentations on:
- Circulating biomarkers
(Dr. Scott Bratman, Senior Scientist, Princess Margaret Cancer Centre Research Institute) - Artificial Intelligence
(Dr. Nehmat Houssami, Breast Cancer Clinical and Population Health Research Group, Daffodil Centre [Australia])
14:30–15:15
Roundtable Discussion
15:15–15:25
Closing Remarks – Heather Jeffrey (President, Public Health Agency of Canada)
15:25–15:30
Algonquin Knowledge Keeper Closing – Monique Manatch
Note: All times are Eastern Daylight Time.
Appendix B – Presenters’ Biographies
Canadian Task Force on Preventive Health Care
Dr. Guylène Thériault is the co-chair of the Canadian Task Force on Preventive Health Care and, in addition to her clinical duties, Dr. Thériault is a co-lead for family practice for Choosing Wisely Canada and has been teaching evidence-based medicine and shared decision-making to students, residents and physicians for several years. She has different academic duties at the McGill Campus in Outaouais and is the founder of the centre for the advancement of evidence-based health care, a website that proposes tools to help incorporate sound care and prevention in clinical practice.
Dr. Ahmed Abou-Setta is the other co-chair of the Canadian Task Force on Preventive Health Care and an Assistant Professor in the Department of Community Health Sciences at the University of Manitoba, the Director of Knowledge Synthesis at the George & Fay Yee Centre for Healthcare Innovation also at the University of Manitoba, the CIHR-funded Manitoba Strategy for Patient Oriented Research (SPOR) SUPPORT Unit, and a Principal Investigator on the CIHR-funded SPOR Evidence Alliance. He leads and supports patient-oriented research including clinical practice guidelines, systematic reviews, and overviews of reviews.
U.S. Preventive Services Task Force
Dr. Wanda Nicholson was appointed as Vice-Chair of the U.S. Preventive Services Task Force in March 2022. She is an obstetrician-gynecologist by training and currently Professor of Prevention and Community Health at the George Washington Milken Institute of Public Health. She is a perinatal and women's health researcher with a focus on developing behavioural interventions for diabetes and hypertensive disorders of pregnancy.
Alberta Health Services
Mr. James Newsome is the Lead of the Program Innovation & Integration team with Alberta Health Services’ Screening Programs. He has worked in Screening Programs for the past six years and in health care for 13 years, and holds degrees in science, clinical research, and business administration. He coordinated and helped develop the new Alberta Breast Cancer Screening Clinical Practice Guideline.
Patients
Ms. Michelle Audoin is the creator of Uncovered: A Breast Recognition Project and lives with stage 4 breast cancer. She collaborates with and advocates for the unmet needs of under-supported communities in the cancer care space with a focus on health equity and the patient voice.
Ms. Vicky auf der Mauer is a proud Inuk woman from the Qikiqtaaluk Region of Nunavut, known as Baffin Island, now living in Dish with One Spoon Territory, otherwise known as Toronto. She is a Storyteller and Beneficiary of the Nunavut Land Claim Agreement. She sits as a Knowledge Keeper for the Indigenous Primary Health Care Council (IPHCC) and Aboriginal Legal Giiwedin Anang Council, an Indigenous approach to supporting custody disputes by child welfare agencies. After receiving a serious health diagnosis in 2019 and unclear on what direction she wanted to go, she first took it to her Indigenous community, eventually walking through the Western medical system to receive treatment. She shares her journey and all the lessons that went along with it.
Canadian Breast Cancer Screening Network
Mr. Gregory Doyle is the Division Manager for Breast Cancer Screening and Cervical Cancer Screening Initiative programs in Newfoundland and Labrador and the Chair of the CBCSN.
Women's College Research Institute
Dr. Aisha Lofters is a scientist at the Women's College Research Institute (WCRI), adjunct senior scientist at the Institute for Clinical Evaluative Sciences (IC/ES), and an Associate Professor in the Department of Family and Community Medicine at the University of Toronto. She previously held a New Investigator Award from the Canadian Institutes of Health Research and is the Medical Director and Chair in Implementation Science at the Peter Gilgan Centre for Women’s Cancers at Women’s College Hospital in partnership with the Canadian Cancer Society. Her research program focuses on improving quality of care in cancer screening and prevention, particularly for populations that experience marginalization, through a variety of methods including community-partnered approaches.
University of Ottawa – Breast Imaging Section
Dr. Jean Seely is a full Professor in the Department of Radiology at the University of Ottawa, Head of the Breast Imaging Section at the Ottawa Hospital, and Regional Breast Imaging Lead for the Ontario Breast Screening Program in the Champlain region. She is the President of the Canadian Society of Breast Imaging and a Fellow of the Society of Breast Imaging and the Canadian Association of Radiologists. Her research interests include Breast MRI, breast cancer screening, quality in breast imaging, and patient experience.
Université Laval – Department of Family Medicine and Emergency Medicine
Dr. France Légaré is a family doctor in Québec City, with a master’s degree in community health and a PhD in Population Health from the University of Ottawa. She is a full Professor in the Department of Family Medicine and Emergency Medicine at Université Laval and holds the title of Canada Research Chair in Shared Decision-Making and Knowledge Mobilization since 2006.
Université Laval – Research and Innovation at the Faculty of Medicine / Department of Molecular Medicine / Université Laval Research Centre
Dr. Jacques Simard is currently Vice-Dean of Research and Innovation at the Faculty of Medicine at Université Laval, Professor for the Department of Molecular Medicine, and a Scientist at the Centre Hospitalier Universitaire (CHU) de Québec – Université Laval Research Centre. He was the chairholder of Canada Research Chair in Oncogenetics (2001-2022). Since 2001, he is heading one of the largest interdisciplinary and international research teams on genetic susceptibility to breast cancer guided by open science principles.
Ontario Health
Dr. Anna Chiarelli is a senior scientist at Ontario Health (formerly Cancer Care Ontario), the provincial scientific lead of the Ontario Breast Screening Program and professor in epidemiology in the Dalla Lana School of Public Health at the University of Toronto. Professor Chiarelli currently co-leads a large-scale applied research project called “Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation. This multi-institutional international project seeks to further the implementation of risk-stratified breast screening guidelines in a cost-effective manner.”
McMaster University – Faculty of Science
Dr. Juliet Daniel is a Cancer Biologist and the Associate Dean of Research and External Relations in the Faculty of Science at McMaster University. Professor Daniel’s research is focused on elucidating the role of the transcription factor Kaiso in cancer and vertebrate development. Her team is also currently elucidating the molecular/genetic causes of the disparities in incidence and poor outcomes of Triple Negative Breast Cancer in Black women. In recognition of her research and community service, Professor Daniel has received several awards including the inaugural Canadian Cancer Society Inclusive Excellence Award.
Princess Margaret Cancer Centre / University Health Network / University of Toronto
Dr. Scott Bratman is the Staff Radiation Oncologist at Princess Margaret Cancer Centre / University Health Network and Associate Professor at University of Toronto. Dr. Bratman is known for his contributions to novel liquid biopsy methods with immense scientific and clinical impact. His ground-breaking research has produced fundamental discoveries in cell-free DNA biology, technologies, and applications for precision medicine and response monitoring in oncology.
Daffodil Centre – Breast Cancer Clinical and Population Health Research Group
Dr. Nehmat Houssami is a clinician researcher and a Public Health physician, and Professor of Public Health. She leads the Breast Cancer Clinical and Population Health Research group at the Daffodil Centre. She has worked in breast screening services for approximately 30 years and is a clinician at the Royal Hospital for Women in Sydney. Professor Houssami’s expertise is in evaluating new technologies including screening trials; she is the National Breast Cancer Foundation Chair in Breast Cancer Prevention, and a National Health & Medical Research Council Leader Fellow.
Appendix C – List of Acronyms
- ACTT
- Alberta Medical Association’s Accelerating Change Transformation Team
- ABC
- Activity-based costing
- AI
- Artificial intelligence
- BCSC
- Breast Cancer Surveillance Consortium
- BIRADS
- Breast Imaging-Reporting and Data System
- CBCSN
- Canadian Breast Cancer Screening Network
- CBE
- Clinical breast exam
- CHU
- Centre Hospitalier Universitaire
- CIHR
- Canadian Institutes of Health Research
- CNBSS
- Canadian National Breast Screening Studies
- CPAC
- Canadian Partnership Against Cancer
- CPG
- Clinical Practice Guideline
- CPHA
- Canadian Public Health Association
- CTCs
- Circulating tumour cells
- ctDNA
- Circulating tumour DNA
- CTFPHC
- Canadian Task Force on Preventive Health Care
- DBT
- Digital breast tomosynthesis
- DCIS
- Ductal carcinoma in situ
- ER
- Estrogen receptor
- FHNs
- Family Health Networks
- FHO
- Family Health Organization
- FHTs
- Family Health Teams
- HER-2
- Human epidermal growth factor receptor-2
- IC/ES
- Institute for Clinical Evaluative Sciences
- IPHCC
- Indigenous Primary Health Care Council
- KEE
- Knowledge Exchange Event
- MASAI
- Mammography Screening with AI
- MRD
- Molecular Residual Disease
- MRI
- Magnetic Resonance Imaging
- OSF
- Open Science Framework
- PHAC
- Public Health Agency of Canada
- PR
- Progesterone receptor
- PRS
- Polygenic Risk Score
- RCTs
- Randomized controlled trials
- SBE
- Self breast examination
- SDM
- Shared decision-making
- SEER
- Surveillance, Epidemiology, and End Results
- SPOR
- Strategy for Patient Oriented Research
- TNBC
- Triple Negative Breast Cancer
- USPSTF
- U.S. Preventive Services Task Force
- WAA
- Women of African ancestry
- WCRI
- Women's College Research Institute
- WHO
- World Health Organization
Appendix D – Glossary of Important Terms
- All-cause mortality:
- is defined as the death rate from all causes of death for a population.
- Benefits (breast cancer screening related):
- refers to the benefit of potentially finding breast cancer before symptoms appear. Earlier detection can lead to better outcomes.
- Biomarkers:
- are measurable substances in an organism whose presence is indicative of disease – in this case, breast cancer.
- Circulating tumour DNA (ctDNA):
- is single- or double-stranded DNA that contains mutations and that is released by tumour cells into the blood.
- Cultural safety:
- refers to an environment that is free of racism and discrimination where patients feel safe. It is based on respectful engagement that recognizes and strives to address power imbalances inherent in the healthcare system.
- Dense breast:
- is used to describe breast tissue that has relatively high amounts of glandular tissue and fibrous connective tissue (and relatively low amounts of fatty breast tissue).
- Detection:
- refers to identifying the presence of breast cancer using imaging or molecular methods.
- DNA methylation:
- is a biological process by which methyl groups are added to DNA molecules, which can change the activity of a DNA segment without changing its sequence.
- Epigenetic changes:
- refer to alterations in cellular function that are not due to a change in DNA sequence. They are reversible, yet heritable, and relate to environmental factors.
- False positive:
- is a test result that is incorrectly classified (as for the presence of breast cancer) requiring further testing to confirm the absence of disease (i.e., "call back”).
- Harms (breast cancer screening related):
- refers to negative outcomes of screening, such as causing anxiety and worry in an individual, false positive leading to more tests, and overtreatment/overdiagnosis.
- Health equity:
- refers to the state in which every individual has a fair and just opportunity to attain their highest level of health.
- Interval cancer:
- a cancer that is found during the time between regular mammogram screenings (for example, because a person feels a breast lump and diagnostic assessments determine it is breast cancer)
- Liquid biopsy:
- refers to a blood sample taken to detect cancer-derived cells and DNA in the bloodstream.
- Overdiagnosis:
- it is defined as the detection of a cancer that would not result in harm to the patient (i.e., that would not cause death to the patient, who might die of other causes). This includes a cancer that would not have become symptomatic and that was only found through screening. Overdiagnosis of precancerous lesions (e.g., DCIS) can be distinguished from overdiagnosis of cancers.
- Overtreatment (resulting from overdiagnosis):
- refers to treatment interventions that do not necessarily benefit the patient, or where the risk of harm from the intervention is likely to outweigh any benefit to the patient.
- Risk factor:
- can be defined as something that increases the risk or susceptibility to breast cancer. Such factors can be genetic or environmental.
- Screening (breast cancer-related):
- the evaluation or investigation using imaging technologies and/or molecular tests for identifying the presence of breast cancer in asymptomatic individuals.
- Shared decision-making:
- is a process in which physicians and patients work together to make medical decisions that consider potential benefits and harms, while considering the patient’s values and preferences. It is considered a key component of patient-centred health care.
Appendix E – Resources
- Breast cancers screening in Canada: 2021/2022
- Breast Screening Information – Screening For Life | Screening For Life
- Citizen advisory groups for the creation and improvement of decision aids: experience from two Swiss centers for primary care
- Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis
- Current Best Practice for Presenting Probabilities in Patient Decision Aids: Fundamental Principles
- Identifying and Addressing Research Gaps in Breast Cancer Screening
- Personalized Risk Assessment for Prevention and Early Detection of Breast Cancer: Integration and Implementation (PERSPECTIVE I&I)
- Task Force Expedites Update to 2018 Breast Cancer Guideline – Canadian Task Force on Preventive Health Care
- Uncovered: A Breast Recognition Project – Rethink Breast Cancer
- Footnote 1
-
The CTFPHC publicly announced on November 15, 2023 that due to the complexity and volume of data to be assessed, it is now targeting a spring 2024 release date for updated recommendations (https://canadiantaskforce.ca/revised-timeline-for-breast-cancer-screening-update/)
- Footnote 2
-
CPAC provided clarification to PHAC after the KEE that OncoSim has actually been updated for the variable of survival in 2023 and is in the process of updating treatment cost variables with a target of early 2024. OncoSim updates are made regularly (several times a year), with new assumptions added based on fresh data, features, and output tables. Recent updates to OncoSim bring incidence and survival estimates and projections in line with the most currently available data in the Canadian Cancer Registry (up to diagnosis year 2020).
- Footnote 3
-
MRD tests are now standard for leukemias and prostate cancer, while a vast majority of solid cancers lack a reliable MRD biomarker.
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