A crisp clear morning greeted the attendees at 39 Grovesnor Square as Italian and British scientists and health database experts alike gathered to exchange ideas regarding the online sharing of cancer data: Not just within their respective countries, but also internationally.
Italian ambassador to the UK Giancarlo Argona kicked off proceedings with an explanation of the series of events to compare notes on a number of areas, not just e-Oncology. He described the sharing of cancer data as an area of “paramount importance” and added that both countries could draw reciprocal lessons and make progress together.
Professor Umberto Veronesi, from the European Institute of Oncology in Milan, echoed the sentiments of Ambassador Argona and described the online communication of science as “ethical need”. He called for the expansion of online communication in science in general, pointing out that many different areas of medicine are now becoming interconnected and that disseminating science increases accrual of new brains to world of science and improves treatment for all:
“The difficulties in increasing communication between scientists are important barriers to the anti-scientific movement, corroding progress and holding back development of mankind. Present circulation of scientific knowledge is restricted to a limited elite but free access is the future. The current gap between possible audience and real audience is huge, for example there are 10 million doctors in the world, and only 30,000 subscribe to the Lancet. Studies which may change the lives of millions of men and women need widespread communication.”
Professor Veronesi described the online communication of science as “ethical need” and pointed out that the time to discuss the viability of such open-access online data sharing had passed – the inevitability of the process must now be accepted.
The next speaker, Professor Sir Muir Gray, chief ‘knowledge officer’ of the UK’s National Health Service, called for a revolution based on common sense, science and great innovation but noted that there were 9 eternal problems in cancer care:
• Errors and mistakes
• Poor quality healthcare
• Unknowing variations in policy and practice
• Poor patient experience
• Overenthusiastic adoption of interventions of low value
• Failure to get new evidence into practice
• Failure to manage uncertainty
• Failure to close the inequality gap
He further noted that professions of any sort were always slow to keep up with new technological developments, but that 21st century cancer care would mean a very well informed, resourceful patient.
Prof Gray cited his NHS choices website and Iwantgreatcare.org as examples of this, pointing out that the later, whilst originally met with great derision from the General Medical Council, was now widely lauded.
He called for a change of culture in the NHS, rather than structure, adding that there had been 20 structural changes in the NHS in his time there and “none has made any difference”.
Summing up, Gray suggested that there was a renaissance taking place in healthcare, with a change from the doctors being at the centre of the organisation, to the patients.
Managing editor of ecancer, Professor Gordon McVie ,gave a brief overview of the journal, accompanied by an analysis of issues surrounding communication of healthcare information such as:
• Distrust of sources
• Language between regions and cultures
• Languages between professionals
• Languages understood by patients
• Language of silence
• Scientists in their own little worlds
• Clinicians in their own disease areas
• Unacceptable heterogeneity of outcomes
Prof McVie agreed with Professor Gray, stating “why shouldn’t a patient have access to as much information as possible?”
Dr David Brewster from the Scottish Cancer Registry highlighted the difficulties of sharing data of different types.
“A cancer registry is an essential part of any comprehensive cancer control. Allowing users to evaluate policy impacts, research health services, survey public health, help cancer charities and carry out epidemiological studies aimed at determining causes. This can lead to a change in patient management in 1 in 4 cases”, he said.
Dr Brewster looked to a future of more systematic capture of cancer data, including chemo and radiotherapy data, and increased linkages to biological data repositories.
The head of the National Health Service’s ‘Connecting for Health’, Professor Michael Thick, admitted that while the project was running late, the £2.4 billion spent so far was justified and the final set up would bring much higher quality healthcare to the UK. He added that the unique identifier – one number per NHS patient – would greatly improve the tangled web of information currently hampering NHS workers.
Following speaker Dr Jem Rashbass, from the UK’s Eastern Cancer Registration and Information Centre (ECRIC), noted that new electronic data had to be extremely high quality and duplication of patient records, something easily spotted by the human eye, but less so by computers, needed to be carefully avoided. The mixing of data is likely to throw up many problems as data standards across a country are extremely diverse, let alone between countries.
Dr Rashbass saw the future as having near real-time data collection, with databases immediately updated and analytical techniques to automatically detect anomalies and outliers. He concluded: “Mapping patient pathways is often very difficult given fractured healthcare systems but it is a process which is essential for increased health service performance and improved patient health.”
Dr Steve Harris from the Oxford University Computing Laboratory presented his cancer grid metadata registry and toolset. He agreed that data sharing was increasingly important and turned to the NCI’s approach to cancer data as an example of standardised data which was easy to interact with other date.
Clinical variable registries using open source (free to edit) software means a quick installation and allowed various organisations to connect trials with statistically insignificant data together to make significant data. He called for a similar approach worldwide, with a worldwide data standard.
Representatives from many more cancer data managing institutes such as the Lombardy Oncology Network, University of Manchester, NCRI and the IEO followed up on the call for increased sharing of cancer data, detailing the technical problems their individual centres faced when dealing with such huge amounts of varied data. caBIG was held up as an example of what can be achieved with enough funding and concise planning, and Eurocan+ as the beginning of Europe’s much needed response.
Professor Eugenio Paci of the Italian Association of Cancer Registries (AIRTUM) highlighted the speed of development of e-Oncology pointing out that cancer registries had gone from epidemiological studies in the 1980s to today testing brand new technology.
Professor Richard Sullivan, of Kings College London and ECRM (European forum for cancer research management) pointed out the legislative and government lag; with many great opportunities existing between countries but efforts currently disjointed. He called for greater funding noting that “less than 1.2 percent of income to major cancer centres goes to e-Oncology”. Prof Sullivan looked to a new paradigm where the mass media, often unreliable as he saw it, could be side-stepped more readily as public engagement with the scientific research grew: “E-Oncology is going to happen. The question is how can we make it quicker and better?”
As Doctor Marco Pierotti from the Istituto Nazionale Tumori, Milan, pointed out; as cancer therapy becomes increasingly tailored to the individual e-Oncology provides a solution to the increased workload that this new approach inevitably brings.
The idea of the patient at the centre of oncology information was widely agreed on; systems where patients could check their specialist’s ‘score’, and study epidemiological data themselves were the future.
The fundamental shift to having the patient at the centre of oncology care appears to be well and truly underway. The original idea of open access – letting the patient discover and decide for themselves – though previously dismissed by the medical community, is now set to be the norm.