Institute of Genetics and Cancer

Ground-breaking collaboration to establish how well cancer medicines really work

Dr Peter Hall from the Cancer Research UK Edinburgh Centre assumes the role of Clinical Lead on the Lothian Cancer Data Intelligence (LCDI) Collaborative Project: May 2018

Peter Hall
Dr Peter Hall (CRUK Edinburgh Centre) – Clinical Lead for the LCDI Collaborative Project.

The Cancer Research UK Edinburgh Centre is at the core of a ground-breaking collaboration with the medicines industry to use real-world data to establish how well cancer medicines really work.


The 18-month Lothian Cancer Data Intelligence (LCDI) Collaborative Project, which has just been launched, sees clinicians, data specialists and pharma industry experts joining forces to find ways to bring together information that is already being gathered by teams treating people with breast cancer.


The project will take a new approach for analysis using a co-called “safe-haven”, which will make it possible to avoid researchers from outside NHS Lothian needing to deal with identifiable information about patients. Only aggregated information will be reported from the project, further protecting the identity of individuals.


The Clinical Lead for the project, Medical Oncologist at the Cancer Research UK Edinburgh Centre, Dr Peter Hall, has a longstanding interest in measuring the value of cancer medicines. He says valuable real-world information on patient pathways, NHS costs, the quality of life and survival benefits of treatments and, potentially, outcomes for breast cancer patients, is all being collected but rarely being brought together in the same place:


As we transition from paper notes to electronic patient records in the NHS we find we have a wealth of data on patient pathways, NHS costs and, potentially, outcomes. For instance, we gather information on toxicity of chemotherapy, cancer recurrence rates, and hospital costs for a single patient with a cancer diagnosis over a number of years.

This information is of tremendous potential value to many different partners, not least pharmaceutical companies who need to know how their medicines are benefiting patients when used day to day as opposed to during tightly managed clinical trials.

While the data is all there, it is hidden away in NHS silos. If we can anonymise it and bring it together – using the very best information governance standards – we can use it to inform local and national decision-making about treatments. And, if we think ahead to what further data we need to capture, we can examine in detail whether the estimates we made when we first decided to adopt a treatment have proved accurate and it is indeed worthy of spending the NHS’s resources on it. This collaborative project seeks to liberate this kind of anonymised data in a standardised and robust way for this purpose, to benefit patients while absolutely safeguarding their confidentiality.


The NHS Lothian funding is being matched by four pharmaceutical companies under the umbrella of the Scotland Collaborations Group of the medicines trade body, ABPI.


Maggie Clark is industry lead for the project. She says the LCDI project comes at an important time as the Scottish Government considers how to take forward a recommendation of the Montgomery Review into access to medicines.


Dr Brian Montgomery proposed that high cost licensed specialist drugs for small patient populations, which might not have had enough patients in clinical trials to prove their cost effectiveness beyond doubt, might be given conditional acceptance by the Scottish Medicines Consortium to allow appropriate patients to benefit at the same time as additional health economic evidence is gathered. This project with NHS Lothian is a first step towards trying to put the pieces in place to make that possible.

Above all, this project demonstrates a collaboration between the NHS and industry which will benefit patients, clinicians, the wider NHS and the pharmaceutical industry by broadening our understanding of the value of aggregated and completely anonymised data. We are showing that it is possible to create a transparent partnership based on trust and dialogue which uses information about patients to help patients, while keeping their identities completely secret from anyone outside the NHS.


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