It was just a year ago at the 2013 Cancer Outcomes Conference that we announced the completion of the migration to a single National Cancer Registration Service - described by the media as “the largest single cancer database in the world”. The announcement didn’t just reflect the culmination of huge amounts of energy and commitment by those involved, but was significant for two other reasons.
The first was the fact that this had not taken millions of extra tax-payers’ money. The second, and for me the most significant, was the very vocal support that it received from many of the charities, and a huge number of patients, many of whom are at the 2014 conference.
Lots of things have happened since then. The term “big data” has been commonly used (and probably overused), and there has been some significant kick-back against large national database projects. There has been huge amounts of media coverage about “secret databases”, the Orwellian dangers to society and the individual and the risks that such technology poses.
If I were to contrast the various successes and failures of “big data” I think it all boils down to the inclusion of (and respect for) the views of patients and families. After all, it is their data that we are analysing. The evidence shows that patients expect us to use the data that we have about their diagnosis, care and experience, to improve things for those who will be diagnosed in the future.
Ultimately, that is the point. Building large databases is, in itself, a pointless exercise and was not why the National Cancer Intelligence Network (NCIN) was established. The purpose of the NCIN is to work with partners and put the time, energy, resource and interpretation into seeing what the data on cancer tells you, to examine differences across the prevention, diagnosis, treatment and recovery pathways, with an unerring focus on improving outcomes.
Using the data to learn what works and what doesn’t, whether it is a campaign or a different form of treatment, requires specialist expertise, which is exactly what you see when you listen to the talks and look round the extensive display of scientific posters.
Of course, holding these data is a privilege and we must continue to undertake our duty to protect the data, to exhibit the highest levels of professionalism in this, and to be transparent about how the data are used. The patient voice, input and oversight is not just important, it is an absolute requirement.
The support which the NCIN receives continues to be strong. If you look around those attending the conference you see it and hear it quite openly. There remains a true sense of ownership of the NCIN by those who give their data, those who store it and those who use it.
I think that is what makes this conference such an uplifting thing. Around a quarter of those attending are patients, families or carers. More are from the charities, big and small. The conference has always had a simple focus – to bring together all those involved in cancer data and intelligence, to show and tell what is going on, what is working, and what isn’t.
It is a refreshing experience to be in a place where the patient voice is so strong, and where there is so much access to such a wide range of expertise, which allows anyone attending to quiz anyone else.
This is not without challenge and different opinions. If you walk around the conference and talk to people, they are not shy to tell you what they think works well, and what doesn’t. They have an opinion, they expect it to be heard, and they seem to value the opportunity that this conference gives. It is where good debate happens, and this is what gives the Network the levels of inclusivity and legitimacy that it enjoys.
2 comments
Comment by David Moore posted on
Coming from a family who has a history of cancer, I really do hope and pray that a cure for cancer can be discovered. Just like tuberculosis was regarded as an incurable disease before but now treatment for tuberculosis is available... I hope that one day in the near future cancer would also be curable. Thank you for your unrelenting service to the people.
Comment by Bren posted on
Hello Chris,
A really interesting and focused blog.
I think the point you capture so well in your blog is "it is their (Patients) data.
The National; Cancer Intelligence Network is a really positive move forwards and will be a great asset to so many. However, it is reliant on mutual trust and understanding..
Best wishes and thank you for the informative and forward thinking blog.
Bren.
The Conference you sited is another key part of the co produced work and again, actively seeking, hearing and understanding the voices of all parties is a must.