UKACR History

Why and how was the UKACR formed?

The United Kingdom Association of Cancer Registries (UKACR) was formed in April 1992 to give cancer registration a unified voice, bring about consistency and prevent duplication of effort.

In the early 1990s, the cancer registration system in the UK was evolving very quickly. Developments in information technology led to rapid changes in registration practices, and increasing demands for accurate and timely information were being made on the cancer registration system from external
bodies, such as the healthcare sector and scientific community. It was recognised that new uses could and should be made of registration data, including for medical audit and the quality assurance of healthcare. Coupled with this, was the widespread awareness of the need to improve the quality and completeness of cancer registration data, and of the opportunities to do so through the use of information technology.

All these changes highlighted the need for collaboration and the sharing of ideas between those involved in the collection and analysis of cancer registration data. Several groups were therefore formed to discuss and resolve matters of common interest. These brought together cancer registry staff and personnel from the Office for Population Censuses and Surveys (which subsequently became the Office for National Statistics or ONS). The longest standing of these was the Cancer Registries' Consultative Group (CRCG), which concerned itself with issues of data collection, including coding and data quality. It had representation from all cancer registries, and its members were mostly registry managers and others closely involved in the day-to-day business of data collection. The Cancer Surveillance Group (CSG) was set up
in 1989 to meet a perceived need for a forum bringing together those with an interest in the use of cancer data. It had an informal and open structure and membership, taking its members from epidemiologists and statisticians, as well as other registry staff. The Cancer Registries Information Technology Group (CRITG) brought together technical experts from the various registries. Education and training was another area of activity thought to be of such importance that it could justify the establishment of another group.

Although these groups proved to be very useful, it was recognised that there was still no coherent framework of organisation for cancer registration, leading to the strong possibility of duplication of effort and inadequate communication between the various groups. There was also concern that, with so many different perspectives and forums in which differing points of view could be expressed, the cancer registries might fail to speak with a united voice when, for example, making representations or giving advice to government. In order to address this, it was agreed that a forum bringing together cancer registry directors on a regular basis was needed. It was therefore proposed that a United Kingdom Association of Cancer Registries be established. Following preliminary meetings at which almost all of the UK registries were represented, the UKACR was brought into being on 2nd April 1992 in Cardiff.