Surveillance System Design and Operation

The surveillance system design must consider not only the objectives and outputs that the system has to deliver but also the need to operate the system in a consistent and affordable way over a prolonged period of time.

Surveillance systems must capture data in a consistent and sustainable way since fluctuations in reporting may mask or mimic genuine changes in the incidence of the disease, exposure or hazard that is the subject of surveillance. While achieving a measure of true disease occurrence within a population through surveillance is probably unrealistic for most diseases and surveillance systems, achieving and maintaining high levels of ascertainment is still desirable. It is particularly important for the early detection of outbreaks and surveillance of uncommon diseases of public health importance and/or diseases that are the subject of elimination programs. It also guarantees that the surveillance system provides a relatively representative picture of the distribution of disease within the target population.

Various system design and operational factors can affect reporting to surveillance systems' completeness and consistency. Statutory or mandatory reporting has been used to achieve high reporting rates. However, evidence suggests that this does not guarantee complete or even high levels of reporting. Surveys in the UK have demonstrated very low reporting of some statutorily notifiable infections , with little evidence that this can be improved by increasing the payment made to physicians for reporting cases. It is also the case that concerns have been raised that making some diseases notifiable may result in patients being reluctant to seek medical attention because of fears about being notified, which was a significant factor in the decision not to make HIV or AIDS notifiable in the UK. Another strategy that may be used to achieve high reporting rates is to adopt a sample-based or sentinel approach to surveillance so that resources can be invested in achieving higher reporting rates from a smaller number of reporters, e.g., by providing training and support, such as in the form of specialized software for reporting. For rare diseases, it is also possible to consider surveillance based on active reporting, where reporters are actively prompted or reminded to report cases regularly. A good example of this latter approach is the British Paediatric Surveillance Unit, which sends out reporting cards every month to all paediatricians in the UK, requesting that they report cases of a list of 10-12 conditions that are the subject of active surveillance.

Although these approaches can achieve higher reporting rates, they do not apply to all diseases or circumstances and do not always achieve the desired result. As a general rule, surveillance systems based on the capture of data from health services are most likely to be sustainable and achieve acceptable levels of coverage of the target population where the system's design is coherent with the infrastructure of the healthcare systems within which patients are seen. Where specialist clinics provide the majority of care for a particular disease or group of diseases, such as is the case with sexually transmitted infections in the UK, surveillance based on data reporting from those clinics can often achieve higher quality (with regards to diagnostic validity of reports and compliance with reporting) information for a given cost than would be possible through systems based on universal reporting. National publicly funded health services often have an established culture of central reporting. As such, surveillance based on voluntary (or mandatory) reporting to a national surveillance centre may be more acceptable than in countries with devolved or largely privately funded healthcare. To some extent, the increasing use of information technology within healthcare services, and the development of electronic patient records, may overcome some of the barriers to reporting in that the effort required of clinical staff should become smaller. However, this will require the development of standards for electronic data exchange and clarification of any data protection issues.

The quality and completeness of reporting to surveillance systems are also likely to be better where reporting uses data collected for clinical or other operational purposes captured as a by-product of routine clinical or administrative processes. Once again, developing electronic patient information systems will likely make this easier. Other opportunities for capturing data without requiring new or additional effort by clinical staff include using laboratory requesting or result reporting data, using forms completed to claim for payment from health insurance companies, and using pharmacy records (e.g., for dispensing of vaccines or disease-specific medications).

References

FEM PAGE CONTRIBUTORS 2007

FEM Editor 2007

Mike Catchpole

FEM Contributors

Arnold Bosman

Mike Catchpole