Dear All,

This research is being carried out as part of a Cancer Research UK funded 
initiative. We wish to gather evidence, identify best practice and produce 
clear recommendations to help improve ethnic data collection for statistics 
of cancer incidence, management, mortality and survival in the UK. We are 
interested in tackling inequalities as they affect cancer. Cancer is a 
major cause of death and illness among minority ethnic groups and 
particular cancers such as head and neck, prostate and lung are especially 
common among certain ethnic groups. Accurate collection of ethnicity for 
cancer statistics will help us to better understand uptake of services and 
health outcomes, monitor trends, target interventions and allocate 
resources to better meet the needs of minority ethnic groups and to tackle 
cancer inequalities.

The NHS has recently produced a 'practical guide to ethnic monitoring in 
the NHS and social care' with examples of good practice. However, there is 
limited information on the uptake of these guidelines and their practical 
applicability. Within the cancer setting, family history, social class, 
material deprivation, lack of access to services and subsequent delay times 
have all been adversely linked to outcome (i.e. survival); ethnic 
minorities are associated with later presentation of disease leading to 
poor survival.  There is an urgent need for evidence on how ethnic 
monitoring data collection might be improved for cancer statistics, what 
mechanisms might be implemented for data quality checks, and a phased 
strategy for optimal use of this data in order to encourage improved 
collection.

The project has the following objectives:

i) Literature review of methods, interventions and barriers addressing the 
collection of ethnicity data (or ethnicity profiling) in primary and 
secondary care; including examples of good practice

ii) Evaluation of health care professionals’ perceptions and experiences of 
collecting ethnicity data in primary and secondary care

iii) Evaluation of consumers' perceptions, experiences and willingness to 
provide ethnicity data 

iv) Validation (completeness and accuracy) of ethnicity data collected in a 
feasibility study of selected PCTs

We believe that this research will help us to understand issues around the 
collection and recording of ethnicity. You can help us by sharing your 
experiences and views. We would be very grateful if you would  complete the 
questionnaire  by following the link http://www.ethnic-health.org.uk/ or 
forward this email to any colleagues who this may be relevant to.  

The deadline for return has been extended from 31st May to Friday 15th 
June. Many thanks for your time, your contributions are essential to this 
research.

If you have any questions or would like to share your experience you can 
contact me on: 

Tel 02476 150 178 or email: [log in to unmask]

Gulnaz Begum CanEth Research Fellow, on behalf of the CanEth study group