Communication with the Patient Information Advisory Group (PIAG)

Communication with the Patient Information Advisory Group (PIAG)

Cancer registries were subject to their first annual review of Section 60 support in May 2003.

This document describes:

Issues to be addressed

From the Guidance for Annual Review, agreed at the March meeting of PIAG and discussed at the meeting on 7 May 2003 of the "Section 60 Sub-Group" of the National Cancer Registration Advisory Group, the issues to be addressed are:

That cancer registries:

  1. must take steps towards developing a communication policy to inform patients of the their work, to advise them that their registration is automatic following a cancer diagnosis, and to describe what personal information will be held;
  2. should not be permitted to pass patient identifiable information to third parties without specific Section 60 support;
  3. should take steps to devise a policy for data retention and disposal;
  4. should set out their plans to devise procedures, which would allow them to use patient identifiable information without recourse to the interim powers available under Section 60.

In addition, in a letter dated 11 May 2003, the Secretary of PIAG identified specific clarifications to items 1, 3 and 4 above and also identified a fifth issue to be addressed:

1. a) Although the Advisory Group welcomed your commitment to seek input from the Plain English Association on patient information materials, it would also like you to test these with patient groups.

3. a) With regard to developing a policy on Data Retention/Data Destruction, it would be helpful if you could provide dates by which these policies will be agreed and implemented. In addition, since you state that cancer registries will hold identifiable data indefinitely, explain what will be done in the interim to limit use of, and access, to identifiable data.

4. a) With regard to the longer term aim of using pseudonymised data, the UKACR needs to keep abreast of developments planned through the NHS National IT Programme in order that cancer registries are able to take advantage of technologies as and when they become available.

5. The UKACR should develop explicit guidance for registries to comply with requests from patients to delete identifiable data about themselves from registry databases.


Information for annual review

To ensure resources were focussed nationally at the highest level in addressing these issues, a "Section 60 Sub-Group" was established, chaired by Professor Lindsey Davies, Regional Director of Public Health at the Government office for the East Midlands. Members of the group comprised:

  • National Coordinator for Cancer Registration in England
  • National Coordinator for Cancer Screening Programme in England
  • Director, National Cancer Intelligence Centre
  • Professor of Epidemiology and Vital Statistics, London School of Hygiene & Tropical Medicine
  • Chair and Vice Chair, UK Association of Cancer Registries
  • Director, West Midlands Cancer Intelligence Unit and Breast Screening Quality Assurance Reference Centre
  • Information Commissioner's Office
  • Information Policy Unit
  • Patient Representative

This group was tasked with the progression of issues around Section 60, and minutes from its meetings are available. It reports directly to the National Cancer Registry Advisory Group, chaired by the National Cancer Director. This group has discussed the issues raised by PIAG in detail and has advised the UKACR to address them as follows:


Developing a communications policy

Communication for health care professionals has been addressed, in that the Department of Health website was extended in January 2003 to provide a focal point for cancer registration information (see information about the national cancer registration system). This site now provides links to all other cancer registries, and in particular to the newly developed UKACR website.

A UKACR task group was formed in January 2003, charged with developing information specifically for patients. The task group has sought guidance from the NHS Screening Programme, which has undertaken significant work in the area of public communication. In collaboration with the Screening Programme, the information leaflet has been redeveloped, specifically for patients and the public. In addition, a specification has been developed to test the leaflet using the screening model and resources to do so have been identified. The target date for the completion of the leaflet development is January 2003. The
target for the release of the information leaflet is April 2004.


Release of patient identifiable information

A comprehensive Policy on Release of Identifiable Information by cancer registries was developed and submitted to the March 2003 meeting of PIAG, where it was approved. A "Frequently Asked Questions" (FAQ) document, produced to respond directly to questions raised in the months leading up to March 2003, accompanied the Release Policy. These documents provide the framework within which all organisations involved in cancer registration and identified in the Statutory Instrument June 2002 need to function. At the meeting on 7 May 2003 of the "Section 60 Sub-Group" of the National Cancer Registration Advisory Group minor changes to these documents were agreed, to take account of recent developments. The Policy will be implemented from 1st July 2003 by all organisations involved in cancer registration and identified in the Statutory Instrument June 2002.

Also presented was a list of releases of patient identifiable data by registries since January 2002. These releases were made in terms of Items 1)b), 1)d)i), 1)d)ii) first bullet, 1)e), 2a), and 2)b) of the Policy on release of Identifiable Information. These items reflect our responses to sporadic requests for routine data releases whereas the other items (not shown)
reflect regular agreed releases of data.

Policy for the retention and disposal of data

PIAG specifically requested us to develop a policy for the long term retention and disposal of data. Even after the death of an individual, access to named data may be required, for example, to provide information to aid genetic counselling of relatives of the deceased. In many cases medical records related to these individuals will have been destroyed and cancer registries are the only source of information.

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Movement towards use of pseudonymised data

The public health benefits of a population-based register derive from the complete, unbiased and quality assured information it holds, which can be monitored over time. Whichever alternative registries need to move towards, must not compromise these qualities. The introduction of an informed consent process will introduce risks that are too great.

Registries have actively participated in the work done by the group commissioned by IPU to take forward the planning for pseudonymisation, but they have concerns about the practicability of such elaborate schemes. The use of the NHS number on all data sources, with strictly controlled access to the de-pseudonymisation key, offers a readily available solution.

A UKACR workgroup has been established to examine all operational inputs of identifiable data for cancer registration. Each flow is to be critically examined and consideration given to any reduction in, or removal of, the identifiable content of the data flow. The group aims to report back by December 2003.

All Registry initiatives were detailed in an annex for PIAG.

Responding to requests from patients to delete their identifiable data

Handling these rare requests is more complex than it seems at first. Deleting all information held on a patient at the time the request is made, makes it impossible to prevent a registration being made for the same patient again, on receipt of a subsequent notification from another of our multiple sources. Removing all trace of a patient also risks the patient, their offspring or the public potentially losing out on the benefits resulting from cancer registration. Our policy takes account of these factors and provides more detailed examples.