Involving people affected by cancer in shaping our genomics policy work

The Cancer Research UK Policy Development team develops evidence-based policy to inform government and health leader decisions related to the cancer research and science environment.

Recently the team have been working on a policy statement, that sets out Cancer Research UK’s recommendations to decision makers to help ensure cancer patients have the opportunity to benefit from the use of genomics in cancer diagnosis, care and research now and in the future.

What is genomics?

The past two decades have seen major developments in the use of genomic testing and medicine in the NHS. Genomic testing looks at someone’s complete set of DNA, called a genome, and can be used to predict how someone’s detected cancer might act. 

Faster, cheaper genomic testing means it is becoming more common for cancer patients to receive this as part of their care. Genomics is also becoming ever more important in cancer research.  We believe all patients should have equal access and opportunity to benefit from genomic testing. You can read more about genomics here.

Involving people affected by cancer

At the early stages of this project, we consulted our 3 Cancer Insight Panels to gather a picture of what they understood about genomics, learn from their experiences and gather their views on what would make a positive experience of genomics should patients have it as part of their cancer care. 

Prioritise

This was a big topic to cover in one piece of work, with lots of avenues we could go down. Speaking with people affected by cancer informed our direction and helped us choose which topics to emphasise, based on what was important to them.

For example, we heard that appointments where patients discussed genomic testing with their consultant were often overwhelming given the large amount of complex information to process. This led us to communicate the importance of improving the genomic expertise of the wider healthcare workforce in our final report, including nurses and GPs, so patients and families feel able to ask follow-up questions in a more relaxed environment after their initial appointment.

A patient's engagement is largely influenced by how the healthcare staff present and communicate the information; it doesn’t have to be an overload.

Cancer Research UK Involvement Network member

Be human

Speaking to people about their experience or family members’ experience of genomic testing was invaluable in helping us understand the real-life impact of the system issues we had identified. We were able to better present technical and complex ideas in a way that connected back to the people that matter: those affected by cancer.

After [receiving a] colon cancer diagnosis I asked for testing as my father died from it. I was told this was not necessary. Four months later after being diagnosed with endometrial cancer I asked again and was referred. Later, I was diagnosed as having Lynch Syndrome.

Cancer Research UK Involvement Network member

The final outputs

The full paper, Sequencing Success, is now available to read, alongside an executive summary and news article. We are actively engaging with government and health sector decision makers and policy makers to discuss our recommendations for change and advocate the interests of those affected by cancer. We are also working with other charities to continue championing the importance of investment in and improvement to our genomics healthcare and research systems across the UK.

‘Our engagement with the CRUK patient networks has been invaluable for this project. For a topic like genomics that’s so complicated and hard to get to grips with, being able to weave real life stories through the report has helped us bring it back to earth and explain to decision makers why they need to push for change – for the real people behind it all.’

Emily, Policy Advisor at Cancer Research