First published by the National Cancer Intelligence Network in 2010, Routes to Diagnosis defined a methodology to determine the route a patient took through the healthcare system before receiving a cancer diagnosis. Unexpected differences in how patients were diagnosed were uncovered, including large variation in short-term survival and many inequalities across different patient groups and cancers. Updates have been used to chart the impact of the National Awareness and Early Diagnosis Initiative (NAEDI), early diagnosis campaigns, improved treatments and the evolution of screening programmes. Results are used to monitor the changes in the distribution of cancers, and to understand better where we can best focus our efforts to improve outcomes.
As part of NAEDI, Cancer Research UK pushed us to quantify how people come to be diagnosed with cancer. We knew that survival rates for cancer in England and the UK were poor compared to our European counterparts and suspected it might be due to later diagnosis. At that time we knew that less than 10% of cancers were diagnosed through screening, and understood something about the percentage of people being referred as a Two Week Wait, but we had no idea how many came via other GP referrals, or through A&E, or were picked up in secondary care, say when a patient is being treated for an unrelated condition. The challenge was to use routine datasets and consider how we could mesh together a variety of data sources to understand patients’ routes to diagnosis. The intention was to identify a route for all cancer patients, not just ‘the big four’. Then the results could be scrutinised by route, age, sex, ethnicity, deprivation and geographical area. Crucially, the patient outcomes, namely survival time after diagnosis, could be examined and compared.
The original objectives of the Routes to Diagnosis project were to answer questions such as what are the routes to diagnosis for patients diagnosed with cancer? Can we work backwards through their cancer journey and ascertain the sequence of events that took them to that diagnosis? Do we understand the differences that age, sex, ethnicity, deprivation and geographical area may have made in reaching that diagnosis? Does route to diagnosis impact on the stage of the cancer at diagnosis?