Patients diagnosed with cancer should be told clearly how the NHS will store and use information about their case to help others in future, says a new report.
The call comes jointly from Macmillan Cancer Support and Cancer Research UK in their Review of Informed Choice for Cancer Registration, Improving awareness of the English cancer registry amongst patients, health professionals and the public.
Data about a person's tumour is recorded in a registry from the point of diagnosis onwards and may be used to improve diagnosis, treatment and care for everyone affected by the disease.
Yet three quarters of those affected by cancer who were surveyed for the Macmillan/CRUK report said they had never heard about the registry. More than eight out of ten believed it was important to be informed.
The review recommends that hospital trusts should be responsible for making patients aware of the registry. It also says there should be a variety of ways for people affected by cancer to find out about the registry, both locally and nationally, and the impact of these in terms of raising awareness should be monitored.
As part of the review, The Brain Tumour Charity helped set up a workshop for representatives of charities supporting those with rarer cancers as well as those affected by the disease to discuss when and how best to inform people about the registry.
We raised concerns about explaining the registry at the time a patient is diagnosed. There is usually a huge amount of clinical information for patients to take in at this time, as well as very difficult emotions to deal with.
We also believe that although the charity sector can provide relevant, disease-specific information about the registry it should primarily be the job of the NHS.
We believe the findings in this review provide a solid base for reform to improve awareness of the cancer registry and accountability in the NHS so that staff are reliably and better informed. We will continue to speak out about the benefits of sharing this type of information for everyone affected by a brain tumour.
The review is part of a larger Government investigation into health data security and consent. It consisted of engagement events, surveys and telephone interviews with people affected by cancer, charity representatives and healthcare professionals and the public.
The report is available to read online.