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Harnessing the power of patient data and the patient experience to improve cancer research and care


This year’s War on Cancer event – hosted by The Economist – was focused on the technological revolution and the future of patient engagement. Lydia Brain, the ICR’s Cancer Stories Officer, reports back from the conference, where she heard from an impressive range of speakers that included policy makers, industry leaders, scientists and patients.

Posted on 22 November, 2018 by Lydia Brain

Doctor consulting with patient, showing data on computer

Image from Pixabay. CC 0 license.

Big Data and artificial intelligence, or AI, have been hot topics in medicine for several years but we’re now starting to see real world applications. And they’re absolutely a part of the technological revolution that cancer research is benefiting from and could lead to major advances in treatment and diagnosis.

With so much patient data potentially available to researchers and clinicians, particularly in the NHS, it’s becoming clear that it can only be fully utilised through the power of AI.

A panel of experts, Dr Giske Ursin, Director at the Norwegian Cancer Registry, Dr Szabolcs Nagy chief executive of Turbine, and Dan Simpson, co-founder at CODE initiative discussed how Big Data can improve treatment and care for patients in the future and how we need to make it work for us.

Keeping one step ahead of cancer

We heard from the panel that, with the right data, in the future we will be able to use computers to predict how a patient may respond to a particular treatment, allowing more personalised care.

The computer algorithm will also be able to predict when and how a tumour may evolve allowing us to be one step ahead of the cancer, reducing the need for trial and error and saving the patient precious time when they otherwise might be on an ineffective treatment.

The full capabilities of what AI can help us with in cancer are not yet understood, but it is believed that AI could help provide one of the turning points in cancer research. The panel discussed the need for worldwide open access to data so that researchers and doctors can learn from previous patients to guide the decisions they are making.

They also discussed the need for standardisation, to ensure that data being kept from different countries is comparable, so that we can appropriately read and use the information.

Preparing for the future of AI

AI and Big Data is a fast moving area of research, and a question from the floor considered the need to prepare for the future of AI in our work now. Dr Ursin responded that to do this we need to ensure that data taken now is structured and clean, essentially organised well, so that whatever questions we may need to ask it in the future, the data is ready with the answers.

At the ICR we’re already harnessing the power of AI and Big Data in our cancer research. Professor Bissan Al-Lazikani’s Computational Biology and Chemogenomics Team is, for example, applying and innovating computational techniques, such as machine learning, in cancer drug discovery. Earlier this year Professor Al-Lazikani addressed the Parliamentary and Scientific Committee about how we use data in cancer research.

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How patients are guiding cancer research and care

The other key theme of this event highlighted the importance of looking at a patient’s view of their treatment, known as patient reported outcomes (also known as PROMS). We are seeing the tide change now in research and care where it is recognised that a patient’s priorities aren’t just survival, but their needs are far more complex and quality of life is up on the top of the list.

The chairman, Dr Vivek Muthu even commented on the importance of language around cancer and how it affects people’s view of living with the disease and therefore their quality of life. He said how even the name of the conference and other war terminology isn’t helpful, and hopefully we will see the language used around cancer change across the mainstream media.

We heard from panels about the need to gather data on patient reported outcomes, so that in the near future doctors and patients are able to look at past data to help decide a care path that works best for their needs.

The data would also provide a platform for researchers to ensure that the work they are doing will see the most benefit for patients, by taking into account their experiences and priorities. We heard from Dr Tim Williams, CEO of My Clinical Outcomes, and Dr Neil Bacon, CEO of the International Consortium for Health Outcomes Measurement, about how their platforms are collecting and using patient outcomes for the improvement of cancer care.

Harnessing patient data within the NHS

We are now at a place where the value of patient reported outcomes is recognised, but we still have barriers to overcome before it can be fully embraced. We heard from the panel about the need for an integrated digital record system in the NHS so that the different healthcare professionals involved in a patient’s care can access and update their records across the different divisions.

We also heard about the need for a standardised set of outcomes that should be looked at across the board in cancer care, with some specialised for different cancer types. Currently, there are hundreds of different outcomes and ways of measuring them in the literature and no industry gold standard to unify the process.

The ICR, in collaboration with our partners The Royal Marsden NHS Foundation Trust, launched a patient reported outcomes registry, PROFILES, earlier this year. This will enable us to collect data on how patients feel about their care and treatment and their long-term quality of life.

Hearing directly from cancer patients

Towards the end of the afternoon we heard from people who had directly experienced cancer themselves – the makers of documentary Mind the dash and the hosts of popular podcast You, me and the big C.

Mind the dash was a project filmed by patients about their lives going through treatment. The delegates had the privilege of seeing this film in its second ever showing.

The film followed three women, all with very different experiences of cancer. We heard from Sarah Davis, who shot and featured in the film about how the project gave her a platform to explore her own story in a frank and honest way. The result being a moving and impactful depiction of her experience with Hodgkin’s Lymphoma,

Sarah’s treatment journey took many turns, with round after round of chemotherapy being unsuccessful. After further chemo and radiotherapy, Sarah was able to have a stem cell transplant which has been a success and she is now able to share her story to help others.

The film was a stark reminder of the realities of going through cancer treatment, and I am sure will be in the minds of the delegates as they go back to their research or clinic.

You, me and the big C

We also heard from Deborah James and Lauren Mahon, who present You, me and the big C – one of the top podcasts of this year. It was the brainchild of their late co-worker and friend, Rachel Bland. The duo answered many questions from the floor from doctors and researchers alike, all motivated to give the best treatment and care to patients as possible.

Lauren explained that You, me and the big C has three main audiences: people living with or beyond cancer, people who love and care for someone living with cancer, and also clinicians and healthcare professionals working with cancer patients.

Since the podcast launched in March, they have done fantastic work breaking down taboos and discussing the real issues that affect people living with cancer – ranging from the basics such as chemotherapy and fertility through to the knock on effects in life such as dating and relationships.

The patients’ advice for the professionals

We heard that they regularly receive praise and questions from doctors. When asked what advice she would give to a room of doctors, researchers, policy makers and healthcare professionals, Lauren wanted to remind clinicians to bring extra warmth and humanity to their time with patients.

She explained that sometimes it feels like, as a patient, you are handed a lot of information and leaflets at an overwhelming and emotional time, but what she really wants is to be asked how she is.

Deborah wanted to ask clinicians to do what they can to speed up the processes in care. She explained that, as a patient, waiting for results or for the next appointment is an agonising process, something known as ‘scanxiety’, and that anything that can be done to speed up these processes and reduce the amount of waiting would save the patients a lot of stress and worry.

The future of cancer care

Advances in research are leading us to a place of more personalised medicine. Not only with being able to choose the most effective treatments for a patient based on their tumour type and genetic make up, but also choosing the best treatment to fit their lifestyle and personal priorities. This is the future of a cancer care system that works for every individual.

If you have a personal cancer story you would like to share with the ICR, you can contact us at [email protected] or find out more on our Share your story page.


Bissan Al-Lazikani big data artificial intelligence war on cancer informatics
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