Our science sector is the envy of the world. We have a rich, diverse and creative academic sector which aligns with an innovative entrepreneurial culture. But in the fields of medicine and life sciences, inventions and discoveries alone do not change lives. For a therapy, device, diagnostic or digital tool to reach patients, a long, often laborious process of translating insights into products and then testing their safety and efficacy through clinical trials is required. If you are diagnosed with a life limiting illness, then often time runs out before you can consent to be on a trial.
We know, from our daily interactions with all stakeholders involved in neuro-oncology clinical trials, that the wider clinical trial system needs to change. It is much bigger than brain tumours. The system is creaky, too complex, and too slow. Patient accruals to trials have declined by 44% in the last four years and the UK has fallen from 4th to 10th best in the world for the number of trials initiated.
So it was good news this week when Lord O’Shaughnessy, who has close links with the brain tumour community, published his report into the UK trial landscape.
Lord O’Shaughnessy has proposed 27 recommendations which will address 8 problem statements. These include speeding study set up and approval processes to prioritising research within the NHS and incentivising clinicians to take part in research.
The problems we hear from the brain tumour community are:
- a lack of time to explore trials, an uncertainty about where to find trials
- no identified research nurse to discuss a trial with
- no understanding about how the trial landscape works
- having to think about trials when you are already overwhelmed and maybe facing surgery
The Government has acknowledged there is work to do and has promised to deliver 5 upfront commitments, backed by £121 million. This should speed up approval processes, making it easier for patients to find trials and proactively find patients who could benefit from innovative treatments.
As a community, we all have a role to play too in developing our understanding about how trials work, who to talk with about trials and where to find them. A good start would be to look at our information here and to sign up to our PRIME community. Whilst we are, first and foremost, a brain tumour support organisation, we know that good support stems from strong evidence. We also know that people with a brain tumour want to be closer to research, and researchers are bringing patients closer to their work. Please ask if you have any questions – we’ve a great understanding of the clinical trial landscape.