In retrospect, 1999 could be seen as the low point for cancer control policy in the UK. In that year, the Eurocare 2 study showed that the survival of patients with cancer was lower in the UK than several other European countries with similar healthcare systems. This finding has since been replicated by much further research—which thankfully also demonstrated continuous improvements in UK survival rates. In the same year, we also learned that cancer survival varies notably between patients living in richer and poorer neighbourhoods of England and Wales. This convinced even the most sceptical members of the academic community (and the most patriotic UK media) that something needed to be done.
The undeniable “double whammy” of international and domestic inequalities in cancer survival helped to focus attention on the timely diagnosis of cancer patients. NAEDI (the National Awareness and Early Diagnosis Initiative) was born in 2008 for exactly this reason. NAEDI is formally described as “a public sector/third sector partnership” between the Department of Health and Cancer Research UK. But it is perhaps better understood as a cultural space enthusing and inspiring a large array of both research funding and policy initiatives. These initiatives encompass (and are supported by) many cancer charities and patient groups, the academic community and, crucially, the NHS. Perhaps more importantly, and as anyone of the 200 delegates attending the NAEDI 2013 conference would attest to, NAEDI is a thriving community of researchers and policy makers with a common sense of purpose and direction.
The great secret for this success perhaps lies in NAEDI’s multi-disciplinary approach. “Multi-disciplinarity” is often invoked in a token fashion, but this is certainly one of the communities where the real thing (outside quotation marks) does indeed happen. The field has benefited tremendously from joint working between health services researchers, sociologists, psychologists, epidemiologists, statisticians, health economists, public health analysts, IT specialists, patient advocates, and doctors (general practitioners in particular). The rapid modernisation of population based cancer registration and intelligence has also been pivotal in NAEDI’s success. The key research questions, perhaps, are only two—but very hard to solve. Firstly, how to empower patients to appropriately seek medical help once they experience symptoms that may relate to cancer. Secondly, how to help doctors (usually GPs) to make appropriate decisions about investigating or referring patients with symptoms that may be related to cancer. These are really hard questions to answer because the specificity of cancer symptoms is generally low; and because we have very few tests currently to help disentangle symptom aetiology confidently and easily. Nevertheless, the research presented at both the NAEDI and the Ca-PRI conferences shows that we are now much better equipped with experience of what works and with knowledge about how best to design our future research. There are also encouraging signs of progress, both about the effectiveness of different awareness campaigns, and for interventions that aim to support clinical decision-making during the consultation.
It is important to also consider NAEDI in a global context, albeit with a certain degree of acknowledged UK centric bias. NAEDI offers a radical enrichment to the conventional paradigm for cancer prevention and control. Prevention is always better than cure. But to the best of our current epidemiological knowledge, far too many patients will be diagnosed with cancer even if all governments in the world took decisive actions to control tobacco, alcohol, obesity, and other lifestyle and environmental risk factors simultaneously—as indeed they should. Although improvements in surgery, radiotherapy and drug therapies will continue to help improve survival, all treatments for invasive and aggressive tumours do work better in earlier disease stage.
In recent years, a tremendous amount of extremely influential research on cancer, both in respect of early diagnosis, but also cancer survivorship, has been produced by self inspired academic general practitioners from many different countries (including Denmark, The Netherlands, Belgium, Canada, Norway, Australia, Germany, the US, and the UK) who have coalesced into the Ca-PRI network (Cancer and Primary Care Research International Network). This year was Ca-PRI’s 6th annual conference, which was held in Cambridge, and suitably “joined up” with the NAEDI 2013 conference. This meeting gathered 135 delegates from all over the world. Apart from an outstanding academic content, the programme encompassed the full “Cambridge experience” including a recital by the choristers of Jesus College in a magnificent 13th century chapel.
Georgios Lyratzopoulos is a public health and health services researcher working at the Cambridge Centre for Health Services Research of the University of Cambridge. His research focuses on the earlier diagnosis of cancer, and other aspects of cancer healthcare quality and epidemiology. He has previously trained and worked in the NHS in either public health (1999-2007) or clinical posts (1994-1999), and also for NICE’s Interventional Procedures Programme (part-time 2005-11).
Funding declaration: GL is supported by a post doctoral fellowship award by the National Institute for Health Research (NIHR PDF-2011-04-047). The views expressed in this publication are those of the author and not necessarily those of the NHS, the National Institute for Health Research, or the Department of Health.
Conflict of interest statement: I declare that that I have read and understood the BMJ Group policy on declaration of interests and I hereby declare the following interests:
I am an academic who researches early diagnosis of cancer and I am currently supported by an NIHR post doctoral fellowship focusing on variation in different measures of the promptness of cancer diagnosis. I declare membership of the following professional groups: a) NICE Guidelines Development Group for “Referral for Suspected Cancer” (May 2012 – expected end of 2014) b) NCRI Clinical Studies Group for Primary Care (March 2013 onwards). I have recently been elected as a member of the BMJ Board of Fellows for a 12 month period starting 1st May 2013. I have attended and presented research by myself and colleagues at both conferences covered in this blog, and I professionally know and/or jointly work with many of other presenters and/or organisers of the NAEDI and the Ca-PRI 2013 conferences.