The benefits of using data to personalise cancer care

Images of scientists and genome to show using data to personalise cancer care

Reform research A data-driven approach to personalised cancer care published today, finds that a more effective use of data could bring about much-needed improvements in cancer care. Report author, Maisie Borrows gives Pharmafield exclusive insight into the benefits of using data to personalise cancer care.

This month, the Secretary of State for Health and Social Care announced ambitious plans to extend the 100,000 Genome Project to 1 million genomes in the next five years. This renewed commitment builds on the exciting advancements being made in discovering the genomic changes causing cancer. If genetic data can be used intelligently by the NHS, it could be transformative to cancer survival.

Transformation in cancer care is necessary. Although there have been remarkable improvements in survival in the last few decades, diagnosis is still devastating. More than one in three people in England will develop cancer in their lifetime, yet survival rates still significantly lag behind comparable OECD countries.

Reform’s research in A data-driven approach to personalised cancer care concludes that a more effective use of data could bring about much-needed improvements. One of the NHS’s greatest strengths is its comprehensive datasets from cradle to grave. These will only get richer as genetic data is added. Collecting and analysing this data intelligently will provide insight that can significantly advance understanding and management of cancer. This insight could be used at every stage of the treatment pathway to make better care decisions.

There is no shortage of cancer data in the NHS. GPs, hospitals, Public Health England, Cancer Alliances, cancer charities and pharmaceutical companies all have multiple datasets collecting information on diagnosis, treatment, outcomes and patient experience. However, as the Reform report found, the abundance of datasets has created a confusing landscape. Some information is missing, making it difficult for clinicians to see the impact of care on outcomes.

For data to drive improvements, the NHS needs to create a single point of access to all cancer data. The cancer dashboard, an online interface providing a comprehensive snapshot of all cancer related information set up by Public Health England, presents the perfect opportunity to do this. The dashboard in its current form has been criticised for missing datasets on information such as treatment and quality of life. Going forward, the dashboard should be extended to become a complete, easy-to-use summary of the state of cancer in England. This will make it much easier for all those involved in cancer care to use intelligence to make meaningful improvements.

In time, the dashboard could make the most of advancements being made by the 100,000 Genome Project and link to this data. This would provide accessible information to clinicians and patients on their genetic risk of cancer. Linking with this highly sensitive data could only happen if patients give their consent and data storage is secure. To maintain patient privacy, differentiated access controls could be used to regulate who has access to the different datasets. For example, a patient’s genetic profile might not be relevant to a cancer nurse’s work, so they would not be granted access, but it could be relevant to a consultant’s work, so they would be.

An improved cancer dashboard provides the NHS with insight to become better at preventing cancer. 40 per cent of all cancer cases in England are caused by preventable factors such as obesity and smoking and known genetic risk factors like the BCOC variant for breast cancer are now identifiable. GPs can use insight on lifestyle and genetics to help those as at risk make healthier lifestyle choices. The report supports the use of social prescribing, so a GP could advise someone to change their diet or try out an exercise class.

Linking data to genetics would also encourage the use of more personalised medicine in the NHS. This is because clinicians would have the necessary information to choose treatment targeted at the genetic profile of a patient’s tumour. In comparison to the ‘blockbuster’ approach, which is typically 30 to 60 per cent effective, personalised medicine is far more effective for patients. It also means many patients could be spared the toxic side-effects of chemotherapy.

Personalised medicine would be more convenient for patients. Much of this new medicine is in pill form, meaning it can be administered ‘closer to home’ by treatment buses or local pharmacies. A branch of LloydsPharmacy in Scunthorpe is providing the personalised medicines Herceptin to breast cancer patients. It is predicted this will save 14 trips out of a possible 17 hospital visits per patient per year.

For this dashboard to really drive improvements in patient care, it should collect data from real-world studies. These look at how treatments impact people in their everyday lives, away from a clinical setting. The Salford Lung study, a partnership between Greater Manchester and the pharmaceutical industry, is the most well-known example of this. This used electronic medical records, along with apps collecting real-time data, to closely monitor patient experience when taking a new medicine. Information like this can provide a much more holistic understanding of cancer treatment, including how quality of life is impacted. In the future, data from apps could be analysed by algorithms, flagging up abnormalities in reaction to treatment and leading to earlier medical intervention, if necessary.

From an NHS and industry perspective, better collection and analysis of real-world evidence can encourage trialling innovative ways of paying for medicines. Greater Manchester, in partnership with industry, is using this real-world evidence to trial outcome-based pricing. Trials like this show how local areas can use data better to invest in treatments most effective to the needs of their population. Outcomes-based pricing should also be a ‘win-win’ for patients and industry; patients should get faster access to more innovative and effective medicines whilst pharma can get an accelerated route to market for medicines with real value.

Expanding the 100,000 Genome Project is just one of several opportunities England now has to greatly improve cancer outcomes. To make the most of such innovation, the data the NHS collects, and how it is analysed, should be improved. Only then can cancer patients truly benefit from more effective and personalised care.