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Background In Canada, there are many separate systems collecting and storing cancer data. For the most part these systems work independently of one another and use varying methods of data collection and analysis. As a result, much of the existing surveillance information on cancer is not available in an integrated format. The Canadian Coalition on Cancer Surveillance(CCOCS) was created to lead the development of an integrated national cancer surveillance system. Once operational, this system will link existing provincial and national systems, in effect creating a "network of networks," and it will provide information for cancer control planners, providers and policy-makers of today and tomorrow. Surveillance is an integral component of the cancer control continuum, and the CCOCS is working in tandem with the Canadian Strategy for Cancer Control initiative. A five-year business plan for the CCOCS, developed in 1998, outlined the areas paramount to the development of a national cancer surveillance system. Seven working groups have addressed cancer information management gaps by consulting and building consensus with expert cancer stakeholders to develop standards and guidelines. Sub-working groups have evolved to work on the specific recommendations of their leader working groups. Numerous national initiatives have generated new challenges and opportunities. These include the formalization of the Canadian Association of Provincial Cancer Agencies [see related Status Report in this issue], the Road Map Initiative (Statistics Canada and the Canadian Institute for Health Information), the National Health Surveillance InfoStructure (Health Canada) and the Canadian Strategy for Cancer Control (Health Canada, National Cancer Institute of Canada, Canadian Cancer Society and the Canadian Association of Provincial Cancer Agencies) [see related Status Report in this issue]. The CCOCS has been responsive to these changes. Revisions have been made to the strategic plan that adapt and redirect our strategies, but the vision and dedication of all the key players remain strong. This status report presents the progress of the CCOCS to date, including its accomplishments and anticipated next steps.
The CCOCS has cemented strong partnerships with a range of key cancer stakeholders, from non-governmental organizations and federal/provincial/territorial departments, to researchers and clinicians, professional societies and consumers. Organizations and individuals have contributed by providing representatives on one or more working groups, disseminating information, supplying expert advice or funding activities or projects recommended by the CCOCS.
The Coalition's organizational structure consists of the Management Committee, the Advisory Committee and working groups. The Management Committee includes representatives of the organizations that have contributed funds towards this initiative. With the guidance of the Advisory Committee, the Management Committee approves projects and activities, sets priorities, liaises with other national organizations, seeks alternative funding sources and oversees the general direction and management of the CCOCS. The Advisory Committee-the original planning group-includes the key funders, all working group and sub-working group leaders, other key cancer stakeholders and consumers. The Advisory Committee coordinates input from the working groups, accepts or rejects their recommendations/directions, recommends priorities, prepares cost estimates and considers input from similar national organizations for possible integration with the activities of the CCOCS. The working groups comprise representatives with the professional expertise necessary to determine the requirements and directions for the various components of a national cancer surveillance program.
The CCOCS Advisory Committee prepared an estimated five-year budget for the development of a national cancer surveillance system. Funding was secured from partners and other organizations to move forward on the first year's activities. The actual budget was less than one tenth of the desired amount. Nevertheless, with limited financial and human resources from key partners (Health Canada, Laboratory Centre for Disease Control [Christina Mills], the National Cancer Institute of Canada [Barbara Whylie, Chair], the Canadian Association of Provincial Cancer Agencies [Bertha Paulse] and the Canadian Cancer Registry [Diane Robson]) and funding for specific projects from Statistics Canada and the Canadian Institute for Health Information, the CCOCS has adjusted some of its priorities and made steady progress toward reaching its desired concrete goals, although the time lines have been altered and the scale has been somewhat reduced. The following section briefly outlines the various activities now being pursued by the CCOCS.
Legislative Framework Working Group
The Legislative Framework Working Group, under the leadership of Eric Holowaty (Cancer Care Ontario), has contracted an academic-based group of lawyers to conduct an inventory and analysis of provincial, territorial and federal legislation affecting the collection, use and disclosure of health information in 13 jurisdictions. The resulting report will recommend suggested changes to current legislation and/or the creation of new model legislation. The report will be circulated to cancer stakeholders, including the Canadian Strategy for Cancer Control and those in other disease areas who are dealing with similar legislative issues.
The Patient Management Working Group, under the direction of Bill Evans (Cancer Care Ontario), is moving forward through several activities within the following theme areas.
In the staging arena, the CCOCS is collaborating with key cancer stakeholders and, in particular, it holds a seat on the National Cancer Institute of Canada (NCIC) Staging Subcommittee. This committee advocates the use of tumour node metastasis (TNM) staging on a national basis for all newly diagnosed cancer patients. Statistics Canada and the NCIC are co-funding the Minimum Investigations Required to Stage Project, which will provide an educational resource for physicians to ensure consistency, accuracy and quality of staging information for the four most common cancers. The Radiotherapy Sub-working Group, led by John Hay (British Columbia Cancer Agency), is surveying the 36 radiotherapy treatment facilities across Canada to establish a baseline of the information now being collected and the definitions used. The results of the survey will form the basis of the next phase of the project: the piloting of the collection of radiation treatment information in two or three provinces. Survey results are expected to be compiled by late spring 2000.
The CCOCS hosted the "Maximizing Our Potential" Case Ascertainment Workshop in Ottawa, May 12-13, 1999 (funded by Health Canada). The workshop participants developed recommendations for actions needed to establish a quality management program within the Canadian Cancer Registry. The CCOCS Management Committee was instrumental in bringing the recommendations forward and soliciting funding. To this end, a standards development project has been funded by the Road Map Initiative (Statistics Canada). It is hoped that this project will result in generally accepted quality standards and methods for case ascertainment for the provincial and territorial cancer registries. Statistics Canada has also agreed to devote dedicated human resources toward standards development, to develop procedures for managing coding inconsistencies and to create benchmark indicators for the provincial and territorial cancer registries. Implementation of the Patient Management Core Data will inevitably fall to the Canadian Council of Cancer Registries, which has agreed to form a task force to discuss strategies and next steps. The CCOCS Advisory Committee requested that the Data Definitions Working Group (Chair-Darlene Dale, Cancer Care Ontario) of the Canadian Council of Cancer Registries apply its expertise in the area of definitions and quality assurance for the refinement of the Patient Management Core Data Set. This group has accepted the challenge, and a February 2000 meeting was held to move this forward.
The Population/Public Health Working Group, led by Howard Morrison (Health Canada, Laboratory Centre for Disease Control) and Odette Laplante (Quebec Ministry of Health), has created a resource of standardized questions in the areas of screening and risk factors, categorized as knowledge, attitudes and behaviours. Within the screening component, the following sites will be addressed: breast, cervical, colorectal, prostate and emerging (genetics). Smoking, nutrition, physical activity and environmental/ occupational health will be dealt with in the risk factors area. This working group has also developed a link with Statistics Canada and, specifically, the Canadian Community Health Survey (CCHS), a new initiative that will sample the Canadian public on a wide variety of health-related and demographic questions (sample size 130,000). The CCHS is receptive to input from the Population/Public Health Working Group on subject areas such as nutrition and smoking. A meeting of the working group is planned for spring 2000 to finalize questions, discuss dissemination strategies and brainstorm on how best to interact with other disease groups whose risk factors are similar, e.g. cardiovascular disease.
The Costs Working Group is led by Hugh Walker (Queen's University) with Brian Schmidt (British Columbia Cancer Agency) as leader of the Management Information System (MIS) Sub-working Group. The MIS Sub-working Group met on January 25-26, 1999, to augment and improve the MIS Guidelines Chart of Functional Accounts for use within provincial cancer agencies. These guidelines are administered by the Canadian Institute for Health Information. Once approved by the Institute and the MIS coordinators, it is anticipated that the cancer-specific MIS guidelines will be operational in the provincial cancer agencies in the year 2001. A future meeting of provincial chief finance officers from each provincial cancer agency will address opportunities and problems after implementation of the guidelines. One of the activities of the meeting will be to discuss the creation, use and dissemination of a report based on the application of the guidelines, which will provide interprovincial comparisons and national analyses from a costing perspective. The Canadian Association of Provincial Cancer Agencies will be a major target audience for the report.
The CCOCS hosted the Cancer Progress Report Working Group Workshop on June 16, 1999, in Toronto, led by John McLaughlin (Mount Sinai Hospital). The workshop resulted in a draft report that suggested the following themes with appropriate indicators to be included in a national cancer progress report: prevention, detection, treatment and palliation. The Cancer Bureau in Health Canada's Laboratory Centre for Disease Control has agreed to take the lead in implementing the cancer progress report; the CCOCS secretariat will assist with coordination and act as liaison with appropriate partners. Collaboration Information management and technological needs for cancer surveillance will be addressed by the Canadian Strategy for Cancer Control's informatics theme working group to ensure continuity and prevent duplication. Members of the CCOCS Advisory Committee, led by Roy West (Memorial University), have formed the basis of the surveillance theme working group of the Canadian Strategy for Cancer Control. This working group will deal with the surveillance needs of the topic working groups within the Strategy. The collaboration between the two initiatives will ensure continuity and enhancements to both initiatives and maximize the results of CCOCS activities underway at present. Conclusion The CCOCS has had its share of successes while at the same time overcoming many challenges and changes. An important factor in its success is the synergistic links that have been formed with key cancer stakeholders from across the country, all of whom are committed to the vision of creating a national cancer surveillance system. As well, agreements are continuing to be made between federal, provincial and territorial governments to collect and maintain relevant cancer information and databases according to a common set of definitions and quality standards. Challenges remain in advocating the necessary resources, system development and information sharing needed for surveillance. It is anticipated that the collaboration with the Canadian Strategy for Cancer Control and the Canadian Association of Provincial Cancer Agencies will be instrumental in this domain. The CCOCS is aware that more individuals, groups and organizations need to be informed of the overall objectives and specific activities of the CCOCS, and to this end a concerted effort is being made in the area of communications.
Author References Barbara Foster and Anna Maria Boscaino, Cancer Bureau, Laboratory Centre for Disease Control, Health Canada, Ottawa, Ontario Correspondence: Barbara Foster, Coordinator, Secretariat to the Canadian Coalition on Cancer Surveillance, Laboratory Centre for Disease Control, Health Canada, Tunney's Pasture, Address Locator: 0601C1, Ottawa, Ontario K1A 0L2 |
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Last Updated: 2002-10-11 |  |
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