The Cancer Registry of Norway - Strategy 2016-2019

The Cancer Registry's vision is to prevent cancer and the suffering it inflicts on individuals and their relatives, as well as reduce the challenges cancer causes for society.

MAIN GOAL

Registration of cancer is the basis for the Cancer Registry's activities. The reporting is required by law and data on prevalence are almost complete since 1953. Combined with national identity numbers and population registers, cancer incidence, survival and mortality can be followed in the entire population over time.

In addition to register cancer, the main objectives are:

  • Carry out epidemiological research of high international standard in the areas
    • Incidence, trends and projections of cancer cases
    • Causes of cancer (primary prevention)
    • Screening for cancer (secondary prevention)
    • Natural course, investigation and effect of treatment of cancer (tertiary prevention)
  • Administer, evaluate and further develop cancer screening programmes
  • Provide advice and information on measures that can prevent cancer, and provide advice and guidance on health care against cancer diseases

 

PRIMARY PREVENTION

Primary prevention is to prevent cancer from occurring. The Cancer Registry of Norway maps the incidence of cancer and contributes with knowledge about what causes cancer.

The Cancer Registry of Norway will conduct cancer epidemiological research at a high international level within:

  • Cancer incidence, survival, mortality and projections (descriptive cancer epidemiology)
  • Causes of cancer
    • Lifestyle factors
    • Occupational exposure/external exposure
    • Heredity and vulnerability
  • Early markers of cancer
  • Prevention of cancer in high-risk groups
  • HPV vaccine and HPV-related cancers

 

The Cancer Registry of Norway shall ensure good conditions for primary prevention by:

  • Maintain high data quality
  • Present results and statistics showing today's and tomorrow's cancer situation, including comparisons with other Nordic countries
  • Contribute to reducing variation in cancer incidence by pointing out inequalities based on socioeconomics, place of residence and country background
  • Increase the number of externally funded research projects and work towards the establishment of a Centre of Excellence in Research
  • Initiate, lead and participate in international and national research projects and consortia
  • Further develop ICT solutions to streamline data flow

 

SECONDARY PREVENTION

Secondary prevention involves detecting and treating precancerous lesions and cancer early in the course of the disease. The Cancer Registry of Norway manages, quality assures and conducts research-based evaluation of screening programmes against cancer.

The Cancer Registry of Norway shall continue to ensure the best possible screening services for the population by:

  • Maintain high quality in all parts of the programmes by continuous quality assurance, evaluation and research based on timely data
  • Establish validated quality objectives to ensure high quality in all parts of the programmes/pilot project and subsequent processing
  • Establish more citizen services, with particular emphasis on access to test history and results
  • Design a common communication strategy for the screening programmes
  • Assess the possibilities and consequences of an adapted screening service based on risk profile (stratified screening)
  • Further develop cooperation with professional groups
  • Develop and introduce a new ICT platform for the screening programmes

 

The cervical program must also:

  • Increase attendance in the program
  • Facilitate implementation of HPV test in primary screening
  • Achieve 100% electronic reporting from laboratories and hospitals

The Mammography Programme must also:

  • Review the knowledge base and consequences of any change in the target group for the programme
  • Contribute to the knowledge base for assessing whether digital breast tomosynthesis (three-dimensional imaging) is suitable as a new screening technique

 

The pilot project for the national screening programme against colorectal cancer must also:

  • Contribute to the knowledge base for making decisions on the establishment of a national screening programme against colorectal cancer
  • Make proposals for logistics and IT architecture for a national program

 

The Cancer Registry of Norway shall contribute to increasing knowledge about early diagnosis and prognostic factors by:

  • Research
    • Early markers of cancer
    • Genetics and epigenetics
  • Increase utilization of Janus serum bank
  • Participate in the development and testing of new screening methods, including stratified screening
  • Consider new screening programmes
  • Survey the use of unorganised screening

 

TERTIARY PREVENTION

Tertiary prevention is to reduce the negative consequences of cancer by offering cancer patients the best available investigation, treatment and follow-up. The Cancer Registry of Norway contributes with knowledge and expertise on health services that can reduce mortality and increase survival from cancer.

The Cancer Registry of Norway must have high-quality data

  • Maintain >98% completeness of cancer incidence data
  • Achieve 90 % completeness of data on investigation, treatment and follow-up from the established quality registries
  • Further develop the Cancer Registry's ICT platform for reporting and registry operation so that cancer data are received efficiently and made available for statistics and research
    • Further develop electronic solutions for clinical reporting and reminders, by:
      • Establish structured reporting of pathology results via pathology templates
      • Make updated clinical statistics available to those who report
    • Increase data reuse to reduce cross-entry
      • Retrieving data from specialist systems
      • Work to integrate cancer information into structured electronic patient records
      • Investigate the reuse of data from other sources
    • The Cancer Registry of Norway shall participate actively in forums where premises are set and decisions on ICT solutions are made to ensure that national ICT solutions meet the Cancer Registry's requirements and needs

 

The Cancer Registry of Norway shall contribute to quality improvement of the health service by:

  • Ensure continuous reporting of results to hospitals for local quality work, so that unwanted variation in the health services is reduced
  • Increase the availability of statistics on the entire patient pathway
  • Further develop quality measures that are essential for the improvement of the health service
  • Make up-to-date national statistics available as quickly as possible
  • Establish at least eight new quality registries in order to contribute to quality improvement for several groups of cancer patients

The Cancer Registry of Norway shall establish user participation in the quality registries

  • The Cancer Registry of Norway shall initiate cooperation with patient organisations to obtain advice on the preparation of reports and information, as well as the objectives the quality registries should work towards.
  • The Cancer Registry of Norway shall develop solutions for collecting patient-reported goals for the quality registries.

 

The Cancer Registry of Norway shall conduct research and contribute expertise in clinical epidemiology by:

  • Research on the effect of investigantion, treatment and follow-up of cancer patients' disease course, in collaboration with clinical research communities, including population-based studies of the use and effect of new cancer drugs
  • Document whether equal health services are provided to all citizens regardless of socioeconomic situation, place of residence, country background or other circumstances
  • Further develop methods for modelling survival

 

ADVICE AND INFORMATION

The Cancer Registry of Norway must be visible and clear in public. We will contribute to increasing the population's knowledge about cancer incidence, what causes cancer and how cancer can be prevented.

This can be done in the following way:

  • Work for measures that can prevent cancer and improve the prognosis of a cancer diagnosis
  • Provide target groups for screening programmes with a basis for informed choices about participation in screening
  • Show why cancer statistics, the Cancer Registry's population-based research and results from the various quality registries are important as a basis for decisions about cancer care
  • Contribute with professional competence in the public sphere

The Cancer Registry of Norway will use different channels to reach out with knowledge-based information. Own websites, social media, lectures, and press are examples of important channels, in addition to publishing in peer-reviewed journals.