We started by listing the harms and benefits of the three screening programmes. Important benefits are a reduction in mortality form the cancer and needing less aggressive treatment. Harms are, among others, overdiagnosis and overtreatment and false positive test results. We prioritized a set of short term key quality indicators harmonized across cancer sites, which can be measured to estimate the long-term effects of screening.
In addition, we systematically evaluated literature on the effects (in terms of mortality or incidence reduction) of cancer screening across the European countries. The literature search provided evidence that cancer screening reduces mortality from the three cancers in all European regions where screening was implemented and monitored. The results are used to validate the regional models that were developed for all three cancers.
We have developed the monitoring, the evaluation, the barrier analysis and the stakeholder analysis tools. In the monitoring tool, researchers and programme coordinators can enter annually the results of the screening programme (for example participation rates, number of screens, number of positive screens and cancers by age and stage). The monitoring tool calculates the short term key indicators and the data can be used as input for the decision model to evaluate the long-term harms and benefits of the programme. In the first workshop, in September 2017, around 135 researchers, programme coordinators and policymakers discussed definitions of the data and sources to obtain the data. Most European countries have already provided data for this tool.
In the evaluation tool, users can upload their monitoring data and calculate the effects (for example number of cancers detected, number of cancers deaths) of their current screening programme. When they don’t have enough high–quality data, they can use data of the exemplary country of their region for some of the indicators. They can evaluate the effect of changes to the programme (for example a higher adherence to screening). This tool is first used in the second workshop in September 2018.
In the barrier analysis tool, the user is systematically guided through each phase in the screening system (from invitation, participation and follow-up to treatment). In each phase, the user is requested to systematically think which barriers can be identified and what their influence is on the effectiveness of the programme and on equity. This tool is used in the third workshop in April 2019.
Finally the stakeholder analysis tool is explained in workshop 3 and in two webinars. In the stakeholder analysis, users can identify for the most important barriers the stakeholders involved. An algorithm selects the most important stakeholders that can help overcoming the barrier or need to be convinced to overcome the barrier. In addition, a road map tool has been developed that combines the results of all tools to lead to an action plan. In the fourth workshop, in January 2020, the participants started working on their own road map.
In the period after the fourth workshop the evaluation tool has been extended with an improved cost-effectiveness tool. The exemplary countries have finalised road maps for all their programmes and encouraged workshop participants to do the same. To support these participants a webinar to explain the cost-effectiveness tool has been organised and personal support has been offered. A few countries have been able to finalise road maps and several other countries are still working on it. We will continue to provide all tools and support after the ending of the EUTOPIA project.
