Person-Centred Perspective Initiative
Each person’s experience with cancer is unique. And every individual and family will have different needs and priorities. The challenge is to create a cancer system that respects and responds to these unique needs from the perspective of the person living with cancer—one that focuses on the whole person, not just their disease. To address this challenge, the Partnership is funding 14 new projects led by provincial and territorial cancer agencies and other cancer organizations across Canada.
The projects focus on best practices aimed at improving the patient experience and the delivery of cancer care in four areas:
Gaining Insights from Patients’ Experiences
To understand how best to deliver quality care, we need to hear directly about patients’ experiences. This information must be gathered in a standardized and systematic way so cancer care providers can reliably understand and measure whether the actions they take improve quality of care and enhance the patient’s experience of that care. For example, in Nova Scotia, Prince Edward Island and Newfoundland and Labrador, a new project will measure outcomes reported by cancer patients in the specific areas of anxiety, depression, fatigue and pain and identify how best to help them address these important symptoms.
Integrating Primary Care with Cancer Care
Earlier detection and better treatments mean more and more Canadians with cancer are living longer. As a result, patients often receive their follow-up care and ongoing monitoring from primary care providers (family physicians and community health providers). Improving care transitions between cancer specialists and primary care providers improves the quality of care that patients receive as they transition from one health provider to another.
For example, partners in Ontario, Manitoba and British Columbia are working together to enhance collaboration between health care providers to improve transitions between cancer and primary care. This project will develop a residency training program, complete an environmental scan of the primary care support structures available for cancer patients, and pilot an electronic platform for survivorship care plans to enhance continuity of care.
Meeting the Needs of Cancer Survivors
In Canada, there are more than a million people living as cancer survivors and this number is increasing. Their needs are as diverse as the country itself and to date are not well understood. Due to advances in treatment, up to 70 per cent of children diagnosed with cancer now reach adulthood. The Partnership is funding several projects to address their unique needs, including a cross-country Adolescents and Young Adults Task Force that’s focused on improving health outcomes and quality of life for adolescent and young adult cancer survivors.
The task force will also focus its efforts on increasing access to clinical trials and improving care through the development and use of clinical practice guidelines.
Improving Palliative and End-of-Life Care
Although research shows that most Canadians want to receive end-of-life care in their own home, the majority of deaths still occur in hospital. Integrating palliative approach and end-of-life care earlier and ensuring it is responsive to the needs of patients and families is a priority. Services are not always easy to access in a crisis, particularly in remote and rural areas. A project in Nova Scotia and Prince Edward Island focuses on training paramedics in palliative pain and symptom management to allow palliative patients to remain at home and avoid unnecessary and unwanted trips to emergency departments.
Expanded CLASP initiative supports cancer prevention strategies
The Partnership launched phase two of the Coalitions Linking Action and Science for Prevention Initiative (CLASP). The initiative brings together more than 100 organizations to adapt and spread successful cancer and chronic disease prevention efforts across Canada. Eight CLASP projects are addressing issues such as obesity, tobacco use, sun safety, screening for cancer and chronic diseases, and the unique health needs of First Nations communities.
New online tool provides information on exposure to occupational carcinogens
CAREX Canada provides surveillance information and tools to assess exposure to occupational and environmental carcinogens. A new online tool, eWORK, allows users to access estimates of occupational carcinogens, supporting the development of evidence-informed programs and policies.
Integrating common health promotion priorities
“In the Northwest Territories, the Aboriginal Health and Community Wellness Division is creating synergies and integrating our focus on common health promotion priorities. With four CLASP projects underway, we are focusing our collective efforts on issues such as health promotion in rural, remote and First Nations, Inuit and Métis workplaces and communities and the underlying causes of childhood obesity to dramatically alter the approach to chronic disease prevention.”
Dr. Kami Kandola, Deputy Chief Public Health Officer, Government of the Northwest Territories
First Nations, Inuit and Métis Initiative
Partners from across First Nations, Inuit and Métis organizations, the health sector and the Partnership met in Ottawa on March 6 to launch a new initiative to improve cancer control with and for First Peoples.
More than one-third of us will develop cancer at some point in our lives. But cancer rates among Canada’s First Nations, Inuit and Métis peoples are growing faster than among the general population. The cancer experience of First Peoples is also challenging due to language, cultural diversity, and geography. Many individuals live in rural and remote areas; to get the care they need, they must leave their homes and families and travel long distances. Culturally appropriate care and resources are often not available.
Such complex challenges require a large scale and collaborative approach. In response, the Partnership has launched a new initiative with First Nations, Inuit and Métis organizations, health care providers, and individuals and families impacted by cancer.
With funding from the Partnership, a variety of multi-year projects will focus on the patient journey: from improving culturally responsive supports during diagnosis to providing culturally responsive care, and supportive and safe transitions when patients return to their home communities. The funded projects span eight jurisdictions—the Yukon, the Northwest Territories, British Columbia, Alberta, Saskatchewan, Manitoba, Quebec, and Newfoundland and Labrador— and will help to lay the foundation for addressing other chronic diseases as well.
As the new initiative has made clear, the first step in improving cancer prevention and care among First Nations, Inuit and Métis peoples is to better understand their cancer journey. This past year, the Partnership released two important reports— the First Nations Cancer Control in Canada Baseline Report and the Inuit Cancer Control in Canada Baseline Report—that examine the health care gaps and barriers First Peoples face. A third report focused on the Métis population is almost complete. The reports describe the cancer care pathway, examine emerging priorities and identify promising practices and models of care across the cancer continuum.
Building effective networks and sharing information is also critical. In the past year, the Partnership hosted knowledge exchange meetings that brought together partners from the funded projects as well as others involved in First Peoples cancer care. In addition, new information-sharing strategies are helping partners to benefit from each other’s experiences as they work to resolve common challenges. Together, we will reach our goal: to reduce the rate of cancer among First Nations, Inuit and Métis peoples and to ensure patients and families have access to culturally responsive care.
Partnership takes on Breast Cancer Screening Initiative
In 2013/14, the Canadian Breast Cancer Screening Initiative transitioned from the Public Health Agency of Canada to the Partnership. The move centralizes all four national screening networks (breast, colorectal, cervical and lung) in one pan-Canadian organization to ensure future alignment of the networks’ priorities.
Partnership’s efforts improve pathology reporting
With the support of the Partnership, British Columbia, Alberta, Manitoba, Nova Scotia and Prince Edward Island began implementing electronic synoptic pathology reporting. New Brunswick extended its use across the province.
Increased update of electronic surgical reporting
In 2013/14, Alberta, Manitoba, Ontario and Nova Scotia continued to expand their use of electronic synoptic surgical reporting. The number of surgeons in these provinces using synoptic reporting doubled, and reporting has expanded to include breast, colorectal, prostate, lung, ovarian and thyroid cancers. This expansion reflects investments by the provinces, Canada Health Infoway and the Partnership.
Partnership advances quality initiatives across Canada
The Partnership is working to identify effective quality initiatives across the country and accelerate their implementation across multiple jurisdictions. Four projects were identified for funding over the next three years, focusing on rectal cancer, cancer biomarkers, peer review in radiation therapy and the use of an electronic diagnostic assessment tool.
Enhancing quality of diagnosis and clinical care
“The vision we’re working towards is consistent actions to enhance the quality of diagnosis and clinical care. The common thread that underlies the initiatives in this portfolio is that we work in multiple jurisdictions and it’s all about best practices and innovations. The goal of our work is to improve the consistency and to enhance the quality of diagnosis and clinical care, but beyond that, we’re working with our partners in innovative ways to build their capacity to respond to future challenges in cancer control.”
- Mary Argent-Katwala, Director, Diagnosis and Clinical Care at the Canadian Partnership Against Cancer
Jurisdictions can work together to accelerate improvements in health care.
“The Quality Initiative is a great example of how jurisdictions can work together to accelerate improvements in health care. In collaboration with the Partnership, our work will involve both physicians and patients with rectal cancer and lead to improved patient outcomes across Canada.”
- Dr. Erin Kennedy, Colorectal Surgeon, Mount Sinai Hospital, Ontario
Partnership funds projects to improve the patient experience
The Partnership is funding 14 projects to improve the patient experience and the delivery of cancer care. The projects are focused on four key areas: learning from patients’ experiences, integrating primary care with cancer care, addressing the needs of cancer survivors, and improving palliative and end-of-life care.
Meaningful and sustainable advancements in cancer control achieved through coordinated, collaborative model
“We are extremely pleased to be working closely with the Partnership as it allows us to keep our more than 90 member organizations more informed and engaged with Canada’s cancer strategy. We believe that meaningful and sustainable advancements in cancer control can only be achieved through a coordinated, collaborative model that the Partnership has helped to establish across the country.”
- Marjorie Morrison, CEO, Canadian Cancer Action Network
Incorporating a person-centred perspective
“The role of the advisory group is to offer the patient-centred perspective to the decisions and initiatives that are advancing cancer control in Canada. Through our work, we’ve defined what person-centred perspective means and transferred that out to work in cancer control and that of the Partnership so that the person-centred perspective is embedded in all work.”
- Doreen Edward, Patient volunteer and Chair of the Person-Centred Perspective Advisory Group
“A doctor can give recommendations, may give you his personal opinion, his professional opinion but, in the end, the decision is yours. ”
– Charlotte Schultz, Patient volunteer, Person-Centred Perspectives
Canadian Partnership for Tomorrow Project continues to accumulate valuable data
Close to 300,000 Canadians are now participating in the Canadian Partnership for Tomorrow Project (CPTP) and nearly 114,000 have contributed blood samples. A data access pilot was successfully completed this year, and beginning in mid-2015, researchers will be able to use CPTP data to explore how eating and physical activity habits, environment, genetics and cultural background influence whether or not we develop cancer or chronic diseases.
Focus expands to heart disease
Through a new partnership with the Heart and Stroke Foundation, the project has expanded to gather data related to the brain, heart and cardiovascular system. Detailed health information and magnetic resonance imaging (MRI) scans from 10,000 study participants will provide new insights into the factors leading to heart disease and stroke.
Conference focuses on cancer research in Canada
The Canadian Cancer Research Alliance draws together 31 funding agencies and charities that fund cancer research in Canada. Supported by the Partnership, the Alliance improves coordination among funders to maximize the impact of research investments. In November, more than 1,000 researchers from across Canada attended the Alliance’s second Canadian Cancer Research Conference.
Research accelerating cancer control
“The glue that holds the Canadian Cancer Research Alliance together is the belief that by working collaboratively we can enhance the impact – the collective impact – that cancer research has on discovery research as well as advancing cancer research for the benefit of Canadians that are affected by cancer. We work together collaboratively to find ways in which we can maximize the monies invested into cancer research to accelerate cancer control.”
- Robin Harkness, Executive Director of the Canadian Cancer Research Alliance and Research Special at the Partnership
Keeping pace with population research in other countries
“Given Canada’s geographic size, environmental diversity, its multicultural profile and the nature of its health care system, the Canadian Partnership for Tomorrow will be an invaluable research platform for Canadian and international scientists and will ensure Canada keeps pace with population research underway in many other countries.”
- Tom Hudson, President and Scientific Director, Ontario Institute for Cancer Research
New initiative funds projects to improve cancer journey
In 2013/14, the Partnership launched the First Nations, Inuit and Métis Cancer Control Initiative to improve the quality of the cancer journey for First Peoples. A variety of multi-year projects will focus on the patient journey: from improving culturally responsive supports during diagnosis to providing culturally responsive care and supportive and safe transitions when patients return to their home communities. The array of projects span eight jurisdictions—the Yukon, the Northwest Territories, British Columbia, Alberta, Saskatchewan, Manitoba, Quebec, and Newfoundland and Labrador.
Report examines health care gaps and barriers for First Nations
The Partnership examined health care gaps and barriers faced by First Peoples in its First Nations Cancer Control in Canada Baseline Report, released in 2013/14. The report describes the cancer care pathway, examines emerging priorities and identifies promising practices and models of care.
New report focuses on cancer care for Inuit
The Inuit Cancer Control in Canada Baseline Report was released by the Partnership in 2013/14. The report examines the health care gaps and barriers faced by Inuit, and describes the cancer care pathway, examines emerging priorities and identifies promising practices and models of care.
Combination of western science and traditional lodge ceremonies a strong approach to healing and wellness
“I truly believe that the approach to cancer and cancer awareness for First Nations, Inuit, and Métis people, is through a combination of western science and traditional lodge ceremonies.
Cancer does not discriminate based on age, race, or colour. I wanted to advocate for First Nations, Métis, and Inuit people by sharing my journey, and providing for them opportunities and services that are available to them through the agency and through their provincial system… coupled with western medicine, it is a strong approach to healing and wellness.”
– Darren Okemaysim, Beardy’s and Okemasis First Nation, Saskatchewan.
Supporting First Nations, Inuit, and Métis stakeholders
“The team at the Partnership has been focused, over the last six months, on supporting the jurisdictions in the planning phase to work together in their regions with First Nations, Inuit and Métis stakeholders and health and cancer control staff to convene together, share what they know and look for common solutions and define priorities that could be addressed through a multi-year initiative. It’s a first and it’s impressive that there are 8 of the 13 jurisdictions and the many people and partners within these jurisdictions working towards advancing the continuity of care for those who experience cancer. The trust and relationships that underlie this work take a commitment from all people involved in the work and what I’ve experienced, is a common connection and hope that by working together, we will improve the cancer experience and outcomes for our people.”
Landmark report looks at cancer risk in Canada’s largest cities
The Partnership’s landmark report, Population Health in Canada’s Largest Cities, assessed differences in the cancer risks of populations in Canada’s largest cities. By reviewing factors such as tobacco use, physical activity, obesity, and fruit and vegetable consumption, the report showed that people living in Canada’s western cities have healthier lifestyles and better cancer risk profiles.
Report uncovers disparities in Canadian’s cancer care
A Special Focus Report: Examining Disparities in Cancer Control uncovered potentially important disparities in the cancer care received by Canadians based on how much they earn, where they live, and if they are recent immigrants or Canadian-born.
Exploring new patterns of cancer care
In its comprehensive annual review of Canada’s cancer control systems, the Partnership introduced new indicators in areas such as system efficiency. The 2014 Cancer System Performance Report also highlighted a number of important patterns of cancer care. For example, older Canadians with breast, colon or lung cancers are less likely to receive guideline-recommended radiation and chemotherapy than younger patients with these cancers.
The important decisions we need to make require strong evidence
“Our goal is to provide information that helps us understand how well the system is working and where we need to make some improvements. We do that by providing data on system performance indicators but more recently, we’re working to incorporate the voice of patients and survivors into our work to make sure that we have a balanced perspective on how well we’re doing and where we need to make improvements. All the information that we produce is the result of working very closely with our partners. This close partnership isn’t just about sharing data; it’s also about building trust. Our reports are seen as a group effort that helps identify where opportunities for improvement and where best practices are across the country.”
- Rami Rahal, Director, System Performance at the Canadian Partnership Against Cancer
Taking action on system improvements
“We are evolving and learning to make better use of the data that exists. In the past, we were data rich but information poor. National reporting is labour-intensive for provinces but the information we obtain from our data helps us take action on system improvements.”
- Dr. Jon Tonita, Vice-President, Saskatchewan Cancer Agency
Launch of new resources helps health professionals integrate evidence and practice
The online resource, 1in3 cancerview digest, summarizes the latest evidence on a variety of topics and presents resources to help health professionals connect evidence and practice in novel ways. Issues launched in 2013/14 included smoking cessation, HPV vaccine, palliative care, First Peoples patient journey, healthy behaviours and World Cancer Day.
Initiative generates better capacity for analysis and use of evidence
The Partnership launched its Analytic Capacity-Building and Coordinated Data Development initiative in 2013/14. The initiative will create new capacity to support analysis and use of evidence and enable consistent pan-Canadian reporting related to cancer treatment.
Novel modeling tool assists policy discussions
The Partnership’s cancer risk management modeling platform is a web-based tool that allows users to estimate the long-term effects of policy and program change, including economic impact. In 2013/14, the tool was enhanced to ensure the availability of relevant and timely information to inform policy discussions across the country.
Exploring financial hardships for caregivers
Working with the Canadian Cancer Action Network, the Partnership participated in a roundtable and produced videos about caregiver and financial hardships.
Engaging public and partners on social media
We took new steps in 2013 towards engaging partners, stakeholders and the public online, with the creation of social media channels on Twitter and Facebook. With our videos on YouTube, content on our website properties, and a new social media strategy, the Partnership laid groundwork for digital engagement on Canada’s cancer control strategies. We will use these new channels for dialogue on patient journeys and feed these experiences back to inform our knowledge transfer and exchange processes. Follow us on Twitter: @Cancer_Strategy and on Facebook at www.Facebook.com/CanadianPartnershipAgainstCancer
Busting cancer myths on World Cancer Day 2014
For World Cancer Day on February 4, 2014, we travelled across Canada to ask the public and experts about their knowledge of cancer. Following the Union for International Cancer Control’s theme of busting common myths about cancer, our series of videos addressed perceptions around tanning, smoking cessation, prevention and screening, signs and symptoms, treatment and supportive care, and cancer risk reduction. The videos were then distributed via partners, journalists, and social media for the purposes of advocacy, and engaging the public in their national cancer control strategy.
In this video: Dr. Mary Gospodarowicz, president of the Union for International Cancer Control (UICC), and Medical Director, Princess Margaret Cancer Centre; Dr. Bernard Badley, Medical Director, Colon Cancer Prevention Program, Cancer Care Nova Scotia; and Dr. Heather Bryant, Vice President, Cancer Control, Canadian Partnership Against Cancer, and Board member, UICC.
A vision becomes reality
In our first five years, 2007-2012, the Partnership enabled cancer control efforts across the country by bringing together cancer survivors, patients and families, as well as clinical experts and government representatives. Knowledge translation was central to our work – helping to move what is known about cancer control into action across the country and helping to fill key knowledge gaps.
Canada’s Cancer Control Strategy
The Partnership evolved from the Canadian Strategy for Cancer Control – a volunteer-driven coalition of cancer experts, patients and survivors that drafted Canada’s first national cancer control plan and advocated successfully for its funding.
The coalition’s vision for a coordinated, pan-Canadian strategy led the federal government to announce the creation of the Canadian Partnership Against Cancer, which began operations in April 2007. The federal government created the Partnership with an initial five-year mandate to implement this national cancer control strategy, as well as to assess whether this model was an effective model for improving cancer control in Canada.
Details about each of the initiatives in the first mandate are available through each annual report.
View the progress and annual reports from 2007-2012