Andi Orlowski, Director at the Health Economics Unit (HEU), and his colleague Heather Humphreys joined DATA-CAN’s James Peach, Deborah Lancaster (former Head of Market Access, Novartis UK) and Heather Moses to present two of a recent HSJ series of national virtual cancer forums.

The forums focused on using data to prioritise cancer care and address inequalities during COVID, and addressing those inequalities now and in the future. Here, we round up their thoughts.

There is an inextricable link between the general impact of COVID-19 and the rate of cancer referrals and diagnosis since the beginning of 2020. As we look to recover from this most difficult period for the NHS, the data underlying this link will be crucial to recovery.

Andi Orlowski says that the data clearly shows the gaps in access to care and which groups and cancer types have been most affected by the pandemic, giving us a starting point for recovery and the levelling up of care as we move forwards.

It’s a topic covered in detail by Heather Humphreys in her presentation, highlighting that as services began to resume after the first lockdown, referrals for those with lower levels of deprivation returned to normal levels more quickly, with a slower rebound for those in the quintiles of higher deprivation (those who were already suffering from health inequalities).

A focus on equity

Heather said: “We have an excellent opportunity to recognise why COVID-19 impacted certain groups more than others, and to recognise what systemic processes contributed to that disparity so that we can incorporate a focus on equity into the recovery process.

“This responsibility extends beyond the NHS; integrated care systems, ideally, will encourage local authorities, voluntary sector organisations and community groups to work together with health services, bringing their knowledge and expertise into the planning and delivery of services to their population.”

Learning and sharing

DATA-CAN’s James Peach pointed towards the benefits brought about by the way COVID data is being shared. “COVID has shown that this level of cooperation is possible,” he said. “During COVID we went to a number of organisations across the country to get an idea of the national picture on cancer care and the data on two-week wait and chemotherapy activity allowed us to see a dip in referrals and amounts of chemotherapy given. Initial indications are that this will probably play out as reduced outcomes.

“In lung, breast and colorectal cancer we have seen a reversal of the progress made over the last five years in five-year survival. NHS Digital has now started sharing real time data on urgent referrals so we can see what is happening in almost real time across clinical commissioning group areas.”

Looking at a regional picture

Sean Duffy, Programme Clinical Director and Alliance Lead, West Yorkshire & Harrogate Cancer Alliance and Strategic Clinical Lead/Programme Director, Leeds Cancer Programme, joined the second forum. He explained that in West Yorks and Harrogate they knew there would be a fall in referrals and diagnostics and that they needed to get prepared for coming out of a wave.

“We were aware that there would be a backlog of cases at the end of wave one, and using patient tracking data we identified a block in diagnostics and endoscopy,” he explained.

The team also considered the ethical dilemma of weighing cancer treatment against people waiting for other specialities when resources are limited. He added: “While we have been applying clinical priority for treatments through COVID-19 with urgent care continuing, elective care has paid the price.”

He said that while cancer remains a high priority in NHS planning guidance, we need to also be mindful of others not treated as a result of COVID: “We need to identify the people we think we are missing, ensure actions are data driven and use population management tools such as segmentation and case finding to find people at risk or delayed.

“We can push people who face health inequalities to the top but there is an ethical dilemma if we choose to do that,” he added.

‘Don’t let the gap widen’

Deborah Lancaster agrees that it is important to focus on finding the undiagnosed cases as “we don’t want the health inequalities gap to widen.”

She added: “We are very focused on addressing health inequalities and digging a bit deeper into the data. Useful insights lead to practical solutions and we are increasing our homecare offering, applying PROMS and PREMS to help manage treatment, offering virtual clinic training and sharing the experience of working in COVID times.

“We are here to treat patients; we don’t develop drugs to see them sit on the shelf. We can support with data and will happily link with anyone in the industry.”

Deborah Lancaster and her colleague Heather Moses explain that working together across industry, academia and other sectors, is crucial to harnessing the opportunities presented by data.

“The collective response to coronavirus meant the potential power of partnerships across industry has never been clearer,” said Heather. “It is collaboration that is allowing Novartis and Genomics England to harness the developments in genomic sequencing in our efforts against COVID, which can later be applied to other areas.

“Enhanced use of technology across clinical trials, service delivery and research beyond coronavirus could help to remove some of the barriers to accessing care for those with mobility issues or other health concerns – aiding the reduction of inequalities, accelerated innovation and improved patient experience.”

Moving forwards

Andi expects a big focus on who was disproportionately affected over the next few years. He said: “There will be a lot of outcomes work and investigation into inequalities – learning more about who did or didn’t get chemo and how we prioritised services in the recovery will be interesting. What’s key is how we use what we’ve learned to do better for the most affected.”

He concludes that analysts need to work hand in glove with clinicians. He says that while capability varies across the country, the closer links being forged through cancer alliances and bodies such as AphA and its regional groups will help analysts link with each other and work together to help us protect the most vulnerable in future health crises.”

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