Last month we blogged about patients and families having their say on cancer registration data. The issue of an NHS central record of information about people affected by cancer has become very topical in recent months.

In September 2015, the Secretary of State for Health, Jeremy Hunt MP, asked Dame Fiona Caldicott to carry out an intensive review into data security within the health and social care systems. As the National Data Guardian, Dame Fiona acts as the chief advisor in ensuring patient’s confidential data is kept secure and is used properly.

Dame Fiona has led two previous reviews into health data security, and her review team and fellow panel members have now published their recommendations following this latest review. They have focused on examining how patient’s data is currently being used and how people are supported to make informed decisions about what happens to information held about their medical treatment and care.

Cancer Charities Review into Cancer Data

In anticipation of this latest review, Brain Tumour Research has been working alongside other leading cancer charities in helping to engage with cancer patients in England through a rapid review. It is clear that the way patients are currently informed about giving their consent to their cancer registration data being stored in the main cancer registry can and should be improved.

From the perspective of cancer research, and brain tumours specifically, we remain concerned that the choice to opt-out of cancer registration without a proper explanation of the benefits for research teams and clinicians could damage overall data quality. Large amounts of cancer patient data can help researchers see the big picture, identifying developing trends, disease behaviours, the potential for new therapies and planning future clinical trials.

NHS National Data Guardian Report

In this latest report, we are pleased that Dame Fiona recognised that “information, drawn from millions of people, can be extremely useful for other purposes, such as medical research”. Her report suggests that “the public is likely to react differently to research that does not have a link back to improving direct care”. However, decision makers must recognise chronically underfunded diseases, such as brain tumours, need their support too.

Although there may be some innovative therapies in the pipeline, the current availability of effective therapies is extremely limited. In order to develop new therapies, the majority of neuro-oncololgists are still in the process of understanding how brain tumours grow and invade healthy brain tissue. Unlocking this information through sustainable and continuous research is the best way scientists will be able to then identify potential new therapies.

There is also recognition in the report of the importance of national disease registers, such as the cancer registry, as well as the growing area of genomics and Genomics England, which is sequencing 100,000 human genomes to support medical research.

The quality of cancer patient data, however, is only as good as the number of people contributing their information. Dame Fiona suggests several alternatives to fully opting out, including data being used only for NHS care or those directly involved in someone’s care. Without someone championing the power and importance of medical research, some patients could decide not to consent to researchers accessing their data, which could cause brain tumour research to lag even further behind.

The report calls for a “much more extensive dialogue” with the public about how their data is shared and more stringent data management practices. This is welcomed, as is the call for more trust-building between patients and staff in the NHS and social care services. Trust between patients and the medical research community is also a relationship that we feel needs to be protected and developed further. Increasing awareness of cancer research, medical trials and innovative treatments is vital for the work of researchers and future patients’ treatment options.

Our Next Steps

In the coming months, Brain Tumour Research will continue to support the ‘Review of Informed Choice for Cancer Registration’, which is being led by Cancer Research UK and Macmillan Cancer Support. We will also seek to ensure decision makers in the Government and NHS England protect brain tumour researchers’ access to patient data, improve patient awareness of medical research and maintain rigorous data security guidelines.

The full report can be downloaded here. Information about the review can be found here (Macmillan Cancer Support website).

Thank you to everyone who responded to the recent patient engagement survey and events, please look out for future updates on this vital brain tumour research issue in the coming months.