The NCIN conference – ‘learning more, researching more, and translating more into practice’

The continued breach of cancer waiting times seen across the UK is a worrying indication that NHS cancer services are under serious pressure.

A recent study also showed that UK GPs may be delaying referring patients for tests or to specialists when compared to those in the best performing countries, and this may be contributing to our lower cancer survival.

Figures and studies like these give us a vital indication of the areas in which patient care needs to be improved in the UK.

At the National Cancer Intelligence Network (NCIN) ‘Cancer Outcomes’ conference in Belfast last month, patients were at the heart of the many presentations and discussions trying to tackle issues like these.

In his welcome address, Northern Ireland’s chief medical officer, Dr Michael McBride, described how patients have high expectations – and rightly so.

But meeting these is proving to be a significant challenge to the NHS, with high costs on the service, often at high cost to patients.

With more and more people being diagnosed with cancer, and more than ever surviving, McBride stressed that at this crucial time we need to be “learning more, researching more, and translating more into practice”.

So what’s the best way to do this? Here we explore the hot topics from the conference, and how information on how healthcare systems are performing (so-called ‘cancer intelligence’) can be used to help patients.

Lung cancer data

The NCIN’s Dr Mick Peake presented data from the National Lung Cancer Audit – an annual assessment of lung cancer care that has been carried out since 1995.

Peake emphasised the importance of audits in collecting data, and how we can make use of the information they provide.

Since the Audit began, the number of people having surgery for lung cancer has doubled. And this has played a key role in boosting the number of people surviving the disease, with five year survival more than tripling since 1995.

But Peake was quick to caution that this wasn’t necessarily the case across the country. There are differences between hospitals – particularly in the likelihood of receiving surgery for a particular form of the disease called non-small-cell lung cancer.

In addition to a patient’s health and the stage of their cancer, their likelihood of having surgery is linked to many other factors, such as the available skills and resources to assess whether a patient could benefit from surgery, and the quality of the post-surgical care.

Some hospitals are not doing this to the same standard as the best in the country, and these variations are reducing the chances that some patients will survive their cancer. This needs to be addressed, to minimise what many would see as a postcode lottery in treatment and patient care.

Diagnosing early

As well as variations in treatment, the proportion of cancers diagnosed at an early stage also varies across England – as the graphic below highlights.

This was part of an analysis presented by Carina Crawford, Cancer Research UK’s senior statistical information analyst, of the variation in stage at diagnosis across different clinical commissioning groups (CCGs – the new GP-led NHS organisations created in the 2011 NHS reforms).

This unacceptable level of variation has been revealed because staging data is being collected far more effectively than just a few years ago. Thankfully, it’s also helping researchers look for reasons for the differences – a starting point towards tackling variation in patient care and outcomes.

We already know there’s a strong link between early diagnosis of cancer and improved survival. For example, more than nine in 10 patients will survive bowel cancer for at least five years when diagnosed at the earliest stage.

These data should encourage those providing care in lower performing areas to focus efforts on spotting cancer early.

But is it really that simple?

‘Influence the influencers’

Tackling regional variation in cancer outcomes means understanding how they’re affected by a wide variety of complex factors. For example, Crawford’s analysis also showed that CCGs with higher levels of socio-economic deprivation tended to see fewer breast, bowel and prostate cancers diagnosed at an earlier stage.

Addressing this needs action from policy-makers – but first we need to get their attention.

As our director of early diagnosis, Sara Hiom, explained, “influencing the influencers” was something we were successful in doing with the vote in favour of standardised packaging for tobacco, which will be introduced in 2016.

By presenting more local data, including information on early diagnosis, and other factors like smoking rates, directly to policy-makers – MPs, healthcare commissioners etc – these data can be turned into action.

Through projects like Local Cancer Statistics Online, we are providing the ‘influencers’ with cancer data relevant to their constituencies, such as early diagnosis figures, treatment data and smoking prevalence. By making these data easily accessible, we hope that the policy-makers and service commissioners will have the evidence they need to make life-saving changes in their local area.

Getting access

But another key issue at the conference was lack of data.

In a panel debate on future challenges for cancer services, it was noted that the difficulty in accessing data has become a huge issue, which has affected the entire research community.

There have been severe issues since NHS England’s attempt to launch a data sharing project called Care.data.

The announcement prompted an intense debate about how patient data and confidentiality was being used and protected, as examples of previous mismanagement came to light. There’s now considerable reluctance in releasing a wide range of information, even routine data, which is non-identifiable.

Clearly data must be used and shared carefully, but the patients attending the conference made their point very clearly in the discussions and presentations; they want their data to be used to help others.

As Margaret Grayson, chair of the Northern Ireland Cancer Research Consumer Forum and patient involvement coach at Cancer Research UK, said: “As a patient I have an obligation to society to allow my medical data to be used to help others. I don’t want my data locked in a box for nobody to use. But equally: don’t sell my data for financial gain.”

The holders of this vast amount of data must set in place a system to ensure data flows in a safe and secure manner so that patients, the public and researchers all can benefit from this.

Since the NCIN conference, we and other key funders of research using patient data, have met the bodies responsible for controlling access. What we want to achieve is a system where the confidentiality of patients’ data is absolutely guaranteed, while legitimate requests from researchers are granted – to allow all of the important work presented at the conference to continue.

Data for patients

Access to data – from a patient perspective – also came up following the evaluation of a new initiative called the Patient Portal – a collaboration between Cancer Research UK, brainstrust and the National Cancer Registration Service (NCRS). During a pilot phase, patients who had opted to use the service were able to access records about their diagnosis and treatment.

This was trialled across five cancers (brain, prostate, kidney, melanoma and bowel) in 88 patients, with nearly nine in 10 of these patients (86 per cent) saying they would recommend the Patient Portal to others.

This is an exciting and empowering time for patients, and we are working to roll out the Patient Portal over many more hospitals, cancer types, and patients.

What patients think

With more patients attending the conference than ever before, patient experience and satisfaction was also a major talking point.

Edel Aughey, Macmillan Transforming Cancer Follow Up project manager from the Belfast Health and Social Care Trust, told us that a quarter of patients are living with life-changing effects after surviving cancer for 10 or more years.

She also said that four in 10 patients (40 per cent) reported unmet needs in their care, with many more saying that aftercare was an “afterthought”.

This comment really set the tone for the following presentations. Richard Stephens, chair of the National Cancer Research Institute’s Consumer Forum, outlined findings from the National Cancer Patient Experience Survey (NCPES) – which he had previously blogged about here.

The NCPES shows that participation in research is linked to a higher number of patients reporting satisfaction with cancer services. Yet, many patients don’t talk with their doctors about research, even though many patients say they are willing to take part.

According to Stephens, “cancer research is a part of cancer treatment,” and patients will feel they’re able to help others by being a part of research. He ended by emphasising that we need to try and provide these opportunities to take part in research to as many willing patients as possible.

Working together

Patients are becoming more knowledgeable, more empowered, and have higher expectations of the care and treatment they are provided with. This presents fantastic opportunities to ensure patients are treated as individuals, not just encrypted datasets, and to work with them to improve healthcare services.

It’s only through working with patients that we’ll know what a world class health service looks like and be able to know whether we are delivering it.

Ultimately, if you are diagnosed with cancer, it’s not international comparisons that matter it’s whether you will survive and be healthy. This was the focus of the conference, and the work must now continue to make it a reality for as many people as possible.

Harriet Rumgay is a statistical information assistant at Cancer Research UK