Innovative commitment to action against cancer (iPAAC)

Background

Cancer is one of the major disease challenges in the EU. In recent years, there has been an intensification of measures in an attempt to approach this challenge from different perspectives. Despite this, there are still a number of unsolved problems.

The Innovative Partnership for Action Against Cancer (iPAAC) will work to develop innovative approaches in the fight against cancer.

iPAAC is a collaboration between 44 representatives of health authorities and affiliated entities from 24 European countries.

Purpose

iPAAC JA aims to promote the rapid implementation of scientific advances from cancer research in health services for the population. With that, the goal is to reduce the burden of cancer. An innovative approach to existing knowledge will lead to more effective cancer prevention and targeted use of gene technology in cancer care. iPAAC JA stimulates the development and use of information systems and registries in the field of cancer, identifies challenges and potential for improvement in cancer care, maps challenges related to innovative cancer treatment, and evaluates comprehensive management systems in the field of cancer, including analyses of national action plans for cancer and package pathways.

The primary target group for iPAAC is politicians and decision-makers, both at EU level and at national, regional and local levels.

All innovative measures covered by the various work areas in the initiative are assessed based on sustainability and potential for integration into national policies. The main focus of iPAAC is the rapid implementation of measures against cancer. The aim is to develop an interactive "Road Map" that can guide decision-makers in the European member states in how they can implement guidelines from iPAAC and CANCON (Cancer Control Joint Action) based on their framework conditions.

Desired results

1. Guide Member States in the implementation of CANCON guidelines at local, regional and national levels. The measures bank shall contain a number of common thematic areas in CANCON and iPAAC. It will thus be an integrated summarized strategic tool for several important aspects of cancer. The tool will be particularly relevant for politicians and decision-makers. 
2. Strengthen cancer prevention through further development of existing recommendations for effective cancer screening and an assessment of potential new general programmes through thorough evaluation of the pros and cons of the programmes. Promote the objectives of the European Code Against Cancer by implementing inequality cancer strategies. The initiative will also evaluate the extent to which development in the genome field is integrated into cancer care. 
3. Promote the management of cancer patients with a poor prognosis (neglected cancers) through the establishment of Key Performance Indicators (KPIs) to follow up patient pathways and discards in connection with the assessment, treatment and care of patients, especially in connection with pancreatic cancer. 
4. Promote the introduction of immunotherapy in clinical practice through a comprehensive mapping of main challenges in this field. 
5. Evaluation of cancer care in the different European countries through an assessment of national quality indicators. 
6. Contribute to effective governance and professional networks for health policy makers in the field of cancer, and gather and provide access to up-to-date knowledge on national action plans on cancer in the EU. 
7. Encourage the use of population-based information systems for effective cancer care. Promote interaction of registries with electronic health and administrative data to assess the quality of treatment, costs and final outcomes. In addition, informative indicators of cancer prevalence at EU level are used. 

Our contribution

WP 2 - Dissemination

1. Under the tab Current events, we inform about upcoming events organized by iPAAC and iPAAC's partners
Information and registration

2. Our own events

• 23 November 2018 – combined Country visit and Local Stakeholders Meeting
  • Agenda - click for PDF
• 28 May 2021 - Local Stakeholders Forum
  • Agenda - click for PDF

WP 4 - Integrating interventions into national cancer strategies - Roadmap

Norway, like all iPAAC partner countries, have contributed to the CCPI's report

• Cancer Control Policy Interview Survey

The coordinator of this work package is responsible for developing a guide for the implementation of action against cancer in national strategic plans - a Roadmap. Based on the CCPIS report, the Cancer Registry of Norway has been commissioned to create 6 (7) information pages for the guide, so-called One Pagers:

• Using social media to increase cervical cancer screening attendance among younger women - the annual #sjekkdeg campaign
• HPV test as primary cervical screening for women aged 34 to 69 years: safe and gradual technology transfer
• The collection of patient-reported outcome measures (PROMs) among prostate cancer patients
• Development and implementation of clinical cancer pathways
• The clinical cancer pathway and pathway coordinator
• Facilitating the transition from hospital to home for patients requiring palliative care
• Adaptation of the system for introduction of new treatment methods in the  public health care to personalized medicine (for WP9)

WP 5 - Cancer Prevention

Task 5.1 - Early cancer diagnosis

• 20 May 2019, Budapest - Conference Early diagnosis of cancer - 5 things you need to know
• The Cancer Registry of Norway is co-organizer of the conference, participates in the conference and participates in writing a report from the conference
• Report

Task 5.2 - Screening for cancer

• 4-5 December 2019, Helsinki - Collaborative partners meeting and conference New openings of cancer screening in Europe
• The Cancer Registry of Norway is co-organizer of the conference, participates in the conference and participates in writing a report from the conference
• 14 January 2021 - The Cancer Registry participates in Cancer screening Webinair
• Report

Task 5.3 - Recommendations for best adaptation of interventions of the European Code Against Cancer

• 22 February 2021, Online conference Cancer prevention in the 2020s
• The Cancer Registry of Norway participates in the conference and is responsible for the Working Group on Infections and Vaccination. The Cancer Registry of Norway contributes with report writing from the conference
• Report

WP 7 - Use of registries and information systems in cancer control

Pilot 1 

Socio-economic differences in diagnostics, treatment and follow-up of cancer patients

Participant information

In this project we will follow up patients with cancer of the colon, cancer of the rectum and anus, cancer of the pancreas and melanoma. Everyone with a diagnosis before and alive as of 01.01.2018 will be followed up with regard to disease course and costs.

We do this by linking data from multiple registers and databases in Norway. We will map any differences in the course of cancer and the financial burden that cancer has caused.

The following registries and databases in Norway will give us access to data to carry out the study: The Cancer Registry, the Medical Birth Registry, the Norwegian Prescription Database, the Norwegian Patient Registry, the KUHR database, the Cause of Death Registry, the National Population Registry and Statistics Norway.

Privacy

The principles for privacy vis-à-vis patients whose data we process are set out in Article 5 of the General Data Protection Regulation (GDPR) and are complied with by existing procedures at the Cancer Registry of Norway / OUS.

We have taken several measures to protect the personal data of patients and reduce the risk of backdoor identification:

• No researcher should have access to directly identifiable personal data 
• The time of diagnosis and other time variables must be stated in years
• In the set of dates of events, the number of days from diagnosis to incident is used
• Only a few specially authorised persons will have access to the data material
• All data usage will be recorded

Research on pseudonymous registry data means that it is not possible to provide access to information used in the project about the individual participant, nor is it possible to restrict processing or delete data from the data file because it will entail a disproportionately large effort while deletion will prevent the objectives of the project from being achieved. Cf. also the exemption in Article 17 (3) (b) of the GDPR and Section 17 of the Personal Data Act.

All the data we receive will be of great importance for research on the course of cancer in Norway, and the results will be used both nationally and internationally.

Legal basis:

• General Data Protection Regulation (GDPR) art. 6 (1)(e), cf. art. 9(2)(j). The processing is necessary for the performance of a task carried out in the public interest.
• Section 35 of the Health Research Act. Exemption from the duty of confidentiality. The treatment also covers links to the Norwegian Prescription Database, cf. Section 5-3, second paragraph, of the Norwegian Prescription Database Regulations.
• Section 3-2 of the Cancer Registry Regulations; Section 9 of the Personal Data Act. Linking to other statutory health registries, as well as Sections 11 and 9b of the Health Register Act.
• Section 8 of the Personal Data Act provides the basis for socioeconomic data from Statistics Norway.

Pilot 2 

Long-term effects in adolescents and young adult (AYA) cancer survivors

Stream:

Participant information

In this pilot study, we will investigate whether we can follow up cancer patients in terms of their disease, health and economic consequences of the treatment they have received in adolescence or early adulthood by linking data from several registries. Specifically, we want to study differences in the socioeconomic life (completed education, work conditions, family foundation) and health situation (other diseases, including secondary cancer, late injuries) in former cancer patients and cancer-freers.

In order to carry out the study, we will use data from: the Cancer Registry, the Medical Birth Registry, the Norwegian Patient Registry, the KUHR database, the Cause of Death Registry, the National Registry and Statistics Norway. Data from the Cancer Registry of Norway cover a limited period of time, from 01.01.1988 to 31.12.2018, while data provided from other registries will follow the individual's life cycle.

Privacy

The principles for privacy vis-à-vis patients whose data we process are set out in Article 5 of the General Data Protection Regulation (GDPR) and are complied with by existing procedures at the Cancer Registry of Norway / OUS.

We have taken several measures to protect the personal data of patients and reduce the risk of backdoor identification:

• No researcher should have access to directly identifiable personal data 
• The time of diagnosis and other time variables must be stated in years
• In the set of dates of events, the number of days from diagnosis to incident is used
• Only a few specially authorised persons will have access to the data material
• All data usage will be recorded

Research on indirectly identifiable registry data means that it is not possible to provide access to information used in the project about the individual participant, nor is it possible to restrict processing or delete data from the data file because it will entail a disproportionate effort while deletion will prevent the objectives of the project from being achieved. Cf. the exemption in Article 17 (3) (b) of the GDPR and Section 17 of the Personal Data Act.

All the data we receive will be of great importance for research on the course of cancer in Norway, and results will be used both nationally and internationally.

Legal basis:

• General Data Protection Regulation (GDPR) art. 6 (1)(e), cf. art. 9(2)(j). The processing is necessary for the performance of a task carried out in the public interest.
• Section 35 of the Health Research Act. Exemption from the duty of confidentiality. 
• Section 3-2 of the Cancer Registry Regulations; Section 9 of the Personal Data Act. Linking to other statutory health registries.
• Section 20 of the Health register Act. Access to and use of indirectly identifiable health information from statutory health registries.
• Section 8 of the Personal Data Act provides a basis for obtaining socioeconomic data from Statistics Norway.