What are the potential implications of opting out?
For you personally
If you choose to opt-out of cancer registration, it may not be possible to identify you as being at risk in future patient notification exercises. For example, NHS England uses cancer registry information to identify women, at risk of breast cancer because of having radiotherapy for Hodgkin Lymphoma when they were younger. The NHS uses this information to make sure that women at risk receive appointments for screening in good time, which in turn helps early diagnosis, reduces anxiety and improves quality of life.
In general, as hospitals become increasingly dependent on computerised records, it may not be possible to guarantee that a decision to “opt out” will not affect your care.
For your relatives
Relatives may remain unaware of important information about their family’s history of cancer. This may affect their care if they also get cancer. For example, with your permission, cancer information could be shared that could be essential to your relatives (including nieces, nephews and cousins) to assess their genetic risk of developing cancer. This information may guide their preventative or treatment choices or even their decision to have children.
For the wider population and health system
If more people choose to “opt out” of the registry then its information will become less complete and less reliable. This will make it less useful to healthcare providers who use the information to allocate resources locally, and less useful for researchers who use it to look for cancer trends, or disease patterns in parts of the country or in certain groups of people or communities.
Researchers use cancer information to find out whether screening and other prevention measures are making a difference. It helps them identify best practice in cancer treatment. Understanding best practice can help improve cancer services across the whole country and beyond.
For the future
20 years ago, no one predicted that thousands of people would benefit directly from registry information. However, when the NHS began to use the registry to support its genetic counselling services and patient notification exercises, that is exactly what happened.
It is difficult to predict in what new ways registry information might support the NHS in the future. However, by allowing the registry to look after your cancer information, any new uses of the registry’s information may benefit you or your family directly.