'The Information Age': What increasing data can mean for cancer care

We are living in the ‘Information Age’ - a click of a mouse can bring us closer to the sum of world knowledge and the answer to most questions can be found quickly on the phone in your pocket.

The methods for generating, distributing and receiving information today are hugely varied and still multiplying.

Consider how many sources you have received information from in the last 24 hours; websites, radio, YouTube, text messages, WhatsApp, email, podcasts, and even this blog. This constant stream of information can be hard to process, and the trustworthiness of our sources is also becoming an increasing worry for some too.

"90% of what we know about cancer was published in the last 5 years" - Dr Larry Norton, oncologist

The situation in healthcare is even more challenging due to the sheer volumes of data generated. Much of this data explosion has been in genomic and molecular data which has massively furthered our understanding of cancer.

Processing, storing and sorting data to identify patterns has become possible with the growing role of bioinformatics and data scientists.

An important output from the 100,000 Genome Project study, published in January 2024, showed how an analysis of over 13,000 samples from people with cancer was being used to identify genetic changes that may help us understand responses to therapy.

Traditionally, a doctor has taken a medical history from a patient comprising some relevant and important facts – but now, added to this very slim data set could be data from their genome.

Future cancer care will require professionals to be able to understand and organise this information so it can benefit their patients but recent discussion has highlighted concerns of ‘information overload’ as a result.

This has posed threats to the running of clinical research where the medical data is matched by an increasing volume of bureaucratic information.

The ‘Information Age’ is also about access to that data. Most people in society today expect to know which of their data is stored, where and why, and not unreasonably may wish to see it.

“Nothing about me without me” is an appropriate ethos for a person-centred approach to health and shared decision-making. However, there are problems in practice.

The USA is ahead of the UK in terms of making open access to medical records a citizen’s right.

The 21st Century Cures Act is a US law which eased patient data access. It seems progressive and correct – but there are stories of concern. For instance, some people discovered a cancer diagnosis days before information and support is available, or at the most inopportune times.

These realities have led to 3 US states changing the legislation to allow clinical teams to keep some checks and balances before releasing all medical information. These lessons learned should be closely observed in the UK as we respect the drive for autonomy and access to healthcare data.

One way to open up medical information to patients is to provide it in language that can be easily understood. There may be unnecessary distress caused if a person misunderstands the jargon in a medical report.

At Macmillan, we produce guides to help people understand their tests but it remains difficult to ‘decode’ a report written by doctors for doctors.

Interestingly, there is recent American experience of producing imaging reports from scans in a patient-friendly format. This approach is welcome but requires healthcare professionals to change lifetime working habits - a slow process.

Another potential solution may be to use artificial intelligence to decode results for patients. There are now commercially available platforms to do this, with several US clinics investing, but we must be sure the benefits would outweigh any risk of harm.

At Macmillan we have vast experience across our professionals and the advisors on our helplines in helping people affected by cancer deal with the distress of a new cancer diagnosis and to understand the jargon.

Is this an area where AI could help support these conversations? Could an AI chatbot provide a person with the correct information in a compassionate way? The answer it would seem from two recent US studies is 'no', or at least 'not yet'.

We can be certain that more work will see these possibilities expand, bringing with them a range of challenges as well as opportunities.

The American mathematician John Allen Paulos coined the phrase ‘Data, data everywhere and not a thought to think’. However, in the context of healthcare data, I think it’s a caution. As cancer care is increasingly powered by complex biomedical information we need to pause and reflect how we can integrate this into compassionate person-centred care.