A movement for patients, relatives and carers. Harnessing the patient voice to build confidence in the use of patient data for research and analysis.

Routes to Diagnosis: Demonstrating the benefits of data usage

World leading cancer dataset shows improvements in diagnosis (17 January 2018)

Routes to Diagnosis now includes 10 years’ worth of data, covering more than 3 million cancer cases, making it the most comprehensive diagnosis of its kind in the world."

"This work uses data provided by patients and collected by the NHS as part of their care and support"

What exactly is "Routes to Diagnosis"? Well, put simply, it's the output from a programme of work initially undertaken by the National Cancer Intelligence Network, and now taken forward by Public Health England, which linked together many years of patient-level data from screening, diagnosis, treatment and outcomes. Initially the question asked was whether such a linkage would identify the mechanisms by which patients were being diagnosed. And if this were possible, to examine the outcomes of these different "routes", in terns of stage, survival, experience and several other factors.

Routes to Diagnosis has become more mature and expansive over the last few years, and remains a world-leading piece of work. And one of the best, most practical and most impactful pieces of "big-data" work to have been done for many years. It has influenced the political debate, changed policy, highlighted and changed clinical practice, research and behaviour.

You can access the latest Routes to Diagnosis publication and a blog from Public Health England here, but shown below are some of the things that use MY data members think about the work, showing some of the stories behind the data.

Ingrid's story

Ingrid was diagnosed with ovarian cancer after her GP took her symptoms seriously and acted quickly on test results.  A consultant gynaecologist initially diagnosed irritable bowel syndrome, but further investigations revealed a stage 3 high grade serous ovarian tumour.  “I am lucky that I wasn’t simply dismissed when nothing showed up on the scans and for completeness, my bloods checked again.  If they hadn’t been, my story could have been a lot worse.” 

The Routes to Diagnosis data shows that 1 year survival for ovarian cancer is 84% following a GP referral, compared to just 48% for those diagnosed as an emergency presentation.

John's story

John’s prostate cancer was picked up early following concern from his GP about raised PSA levels and a family history of prostate cancer, despite uncertainty about the reliability of PSA testing.  Survival from prostate cancer is generally very high compared to other cancers, and over 80% of men are now diagnosed following a routine or urgent GP referral, compared to 67% back in 2006.

Barbara's story

Barbara was diagnosed with bowel cancer following a referral to her GP from the blood transfusion service, after they refused a donation because she was severely anaemic. The GP immediately referred her using the Two Week Wait referral route and she had a colonoscopy in less than two weeks and surgery four weeks after that.  The cancer was late stage, and looking back Barbara can see that she had symptoms that could have suggested that something was wrong. “I thought that mine related to being overweight, sedentary and probably menopausal, so I didn’t see any point in going to the doctor.  I didn’t know that anaemia was a symptom of cancer.  I also thought that as I hadn’t had sudden, unexpected weight loss, then there couldn’t be anything seriously wrong.”

Barbara’s story highlights the role that public awareness campaigns such as PHE’s Be Clear on Cancer can play in alerting people to the signs and symptoms that might be caused by a developing cancer.  We know that diagnosing a cancer earlier means more chance of being cured.

Pete's story

Pete was also diagnosed with colorectal cancer following quick action from his GP, who referred him as a Two Week Wait following what Pete had thought were side-effects of taking some new statin medication.  “To my complete surprise, I was subsequently diagnosed with what turned out to be stage 3 colorectal cancer. It is only due to my GP spotting the symptoms and knowing about the two week wait procedure that I am still here today. To quote my surgeon who removed the 2 tumours, ‘you have been extremely lucky...’.” 

The Routes to Diagnosis data shows that 60% of stage 3 colorectal cancers are diagnosed though one of the managed routes e.g. a GP referral.

Michael's story

Michael repeatedly went to his GP with a slow-growing small dark spot on the ball of his left foot that was oozing and showing no sign of healing.  12 months after his initial GP visit he was eventually diagnosed with stage 4 melanoma, and by that time it had spread to both of his lungs.  Our data has been used by researchers to better understand how cancers that get missed by GPs could be picked up more quickly in primary care.  “Clearly, my circumstances would have been quite different and the NHS would have been spared considerable expense had my GP referred me to a clinician better qualified to recognize an acral melanoma, instead of merely expressing his ignorance as to the cause of the initially presented symptom.”

Laura's story

It took Laura 15 months to fight to get her bowel cancer diagnosed: at 29 years old her symptoms were repeatedly dismissed by her GP and other medical professionals and she was told that she was too young to have cancer.  “I went to A&E in the end in agony, but they turned me away too – the only diagnostics they ordered was a blood test which confirmed my anaemia, a key symptom of bowel cancer. By the time I was diagnosed, I couldn’t work; I couldn’t eat; I could barely stand. I’d lost stones of weight.”

Although the numbers of young people diagnosed with bowel cancer are small, they are on the increase and the Routes to Diagnosis data shows that 71% of these cases are diagnosed as an emergency presentation.

Julia's story

Julia was diagnosed with stage 2a cervical cancer after her GP quickly referred her as a Two Week Wait following post-coital bleeding; however she knows that it would have been detected earlier if she had attended her routine cervical screening appointments.  “I believe that if a GP or other Healthcare Professional had questioned me directly about my lack of screening attendance, over many years, I would of been more likely to have attended.” 

The Routes to Diagnosis data shows that 3 year survival for cervical cancer following a screening diagnosis is 95%, compared to 65% when picked up through the Two Week Wait – when symptoms might indicate a later stage cancer

 

"This work uses data provided by patients and collected by the NHS as part of their care and support"