Data collection and monitoring

Data sources

To determine whether a programme has been effective with respect to its impact on mortality and morbidity requires continuous follow-up of the target population over an extended period of time, and ascertainment and recording of the outcomes of the screening process and of the indicators of programme impact.

There is a special need to monitor performance of programmes using new tests. 

The monitoring and evaluation of the programme therefore require that adequate provision be made in the planning process for the complete and accurate recording of all the relevant data. Achieving this goal is dependent on the development of comprehensive systems for documentation of the screening process, monitoring of data acquisition and quality, and accurate compilation and reporting of the results.  

The information system should be designed to support the implementation of the different steps of screening, to record screening findings of each individual, to identify those detected with abnormalities, to monitor that the recommended action has been taken and to collect information about assessments and treatment. 

For the purposes of impact evaluation this information should be linked to several external data sources, and legal authorisation to be able to achieve this should be secured: population registries, for estimating population coverage and to identify people in the target population in relation to their screening history; cancer or pathology registries, for cancer follow-up and for quality assurance purposes and feed-back to clinicians; and cause of death register for individuals in addition to population statistics, for assessing vital status and cause of death for final effectiveness evaluation. 

How to respond to outcomes of monitoring 

The design of the information system should take into account the views and data requirements of all groups involved in the screening programme. A wide range of consultation and participatory planning is important to improve programme evaluation, through common definition of data elements, indicators and standards. The programme should ensure that professionals involved in screening receive timely feedback on programme and individual performance. Rapid publication of the monitoring results is important as screening units and other actors need the information to run their activity and to implement quality assurance and training efforts.

In order to achieve these aims it is recommended to identify a coordination board that is responsible for regularly auditing the programme and taking necessary actions (including indications about the specific organisational changes which are necessary to meet the desired quality standards). 

Recommendation 

In order to be able to evaluate effectiveness of screening, the data must be linked to several external data sources including population registries, cancer or pathology registries, and registers of the cause of death at the individual level in the target population. Therefore, legal authorisation should be put in place in order to be able to link the aforementioned data for follow-up when screening is introduced (VI - A).