NHS: Cancer Treatments

Lord Freyberg Excerpts

Thursday 25th January 2018 Lords Chamber

[Lord Freyberg (CB)]

My Lords, less common and rare cancers account for more than half of all cancers, but each is a small individual market and so under-researched. Be they brain or, in my sister’s case, mesothelioma, they suffer a chronic lack of innovation. I therefore commend the noble Baroness, Lady Jowell, for her bravery and the moving way in which she has brought these important issues to the House.

This country has a globally unique research asset that could make a difference. It is the cradle-to-grave records inside the NHS. We are uniquely placed to supply the insights on what works and what does not. This large-scale, real-world information could revolutionise care and research, especially health economic evaluation.

Yet researchers cannot get access. Let me explain, with some examples. The Brain Tumour Charity has been trying to unlock this data for their patients, 97% of whom want their data to be used for research. They have written informed consent, yet they have been met with official obstruction at every turn. NHS Digital wants £100,000 a year. Public Health England wants £378 an hour, and for information that would be more than a year out of date.

The same challenges affect those developing cures. In a recent survey, more than 80% of UK biotech companies said that NHS data and patients are a unique asset for the UK life sciences sector. However, almost all said that access to these insights was near impossible given current processes and policy, and that they were forced abroad.

We want to see the NHS improve patients’ lives through innovation. We are all aware that there is no infinite money tree from which to pay for such innovation and, as a result, we need timely and accurate evaluation based on real-world insights from within the NHS on what works and what does not. It is important to stress that decision-makers and researchers generally do not need access to patient-level data; they need access to privacy-conserving statistical insights such as, “Is treatment A or B more effective?”. Statistical technologies exist to do this routinely, and at very low cost, yet they are almost unknown in the NHS, which employs armies of human analysts instead.

We must get the policy and investment on real-world research right if we are to make effective use of these assets. It does not require primary legislation, but it does require joined-up thinking across health, business and research, and careful management of various internal vested interests. The creation of Health Data Research UK provides a unique opportunity to drive such alignment. Therefore, I ask the Minister to commit to using the life science sector deal to make this happen. Can he confirm the routine measurement of care outcomes in the NHS as his top priority, and clarify who will be in charge of co-ordinating and funding delivery for this critical cross-cutting agenda?

It has been a huge privilege to partake in the debate of the noble Baroness, Lady Jowell.