Our second day of the conference “Supporting research” was introduced by David Ardron, Lay member, National Cancer Intelligence Network Steering Group.
David is passionate about advocacy and patient involvement at all levels. It’s always a joy to be around David as he’s very good at inspiring you to do more, to get involved, to have a voice, to listen and to talk.
John Parkinson, Director, Clinical Practice Research Datalink
Clinical Practice Research Datalink – presentation
John reiterated the need for quality data “Extremely important that we monitor the quality of data”. I loved that John informed us that the worst UK data is still leagues ahead of much of the global data, including the USA.
CPRD is looking at the quality of the data, setting and monitoring standards. Looking at randomised trials with regard to the data and every day improving it and the standards for it’s retrieval and inclusion. Currently they have 52m signed up in England and are adding another 12m for Scotland, Wales and Northern Ireland.
The data is accessible, searchable, cross-referenced and linked to many systems. Thereby allowing the users to really determine patterns, information, requirements, costs etc associated with the data. It’s aim is so that utilising this data becomes easier so do the results to predict AND address trends or increases in disease but also to be able to report on where something didn’t go as it should or can be improved upon.
Fascinating and I shall be watching the news with regard to CPRD.
Kerina Jones, Senior Research Fellow, Health Information Research Unit (HIRU)
The Secure Anonymised Information Linkage (SAIL) system: challenges and opportunities in health data linkage – presentation
Kerina’s presentation of the SAIL system once again highlighted many of the challenges idenitfied by others. THey are however tackling many of them head on with this system. Certainly worth watching for other integrated systems, how to integrate and why integrated data is required if we are to make headway in healthcare.
Kerina also showed us the MS Register which is being used to understand more about ‘living with MS in the UK’ and trying to make sense of MS. As you know Mum was diagnosed with MS and although she lived a long and active life for many many years with the illness, it ended her life early. She sought answers to why, what if, how since diagnosis and importantly questions such as how do I lessen the effects, deal with the side affects or get by day to day. Perhaps this MS Register will lead others to the answers that Mum so desperately sought or perhaps the people currently providing answers will help a new generation to manage life with MS. If you know someone diagnosed with MS, perhaps they would like to register and become involved?
Are you part of the Biobank database? I am. So I found it really fascinating to hear more about Biobank from the aspect of how the data is being used, rather than the questions that I see and reply to.
It was a huge project to implement with over 500,000 UK adults taking part. Questionnaire to be completed, physical health tests to take, blood and spit to be given and analysed and then the follow up processes. As a participant I found the inclusion process very easy to do and well organised.
Cathie showed pictures of where samples are stored and also how they may be utilised for testing. Her slides in the presentation and the information on the site itself show how the data collated and utilised on this scale really can make improvements in care in the UK. It also demonstrates that projects, even on this large scale, can also be carried out efficiently and make a difference. However it really does require our involvement – would you get involved?
We then headed to parallel sessions chosen by each delegate from the following:
Co-morbidity and risk adjustment
Recurrence and late effects
I attended: International focus
The session was introduced by Dr Jane Hanson, Lead Advisor for Cancer, Welsh Government & Head of Cancer National Specialist Advisory Group Core Team.
There is something so fabulously refreshing and encouraging to hear from a group of clinicians and researchers about collaborative working across borders. All the speakers in this section were able to demonstrate joint working, the reasons for it and also sourcing some results. Excellent and I truly hope that other, perhaps insular projects, look to join forces with others.
Harry Comber, Director, Irish National Cancer Registry
Towards a European cancer information system; the EUROCOURSE project and beyond – presentation
EUROCOURSE was new to me. It’s growing and the buy-in from a multiple level of sources and countries is growing. The strict regimen for which data is accepted is being acknowledge and addressed (after many iterations and refinements). The future, albeit, a great deal of work could benefit more than just cancer. By sharing into a joint portal all european cancer registry, we will be able to not only improve healthcare but also to look at Europe being the choice and specialism for some cancers – and accessible.
There is a conference in September 2012 (that I’m not attending) IACR Conference 2012 at which it is hoped to define further registration methods, data quality issues, evaluation of clinical care, survivorship and survival and linkages with other data.
Dr Roberta De Angelis, Senior Researcher, National Centre of Epidemiology, Italian National Institute of Health
Cancer survival in Europe: first results from the EUROCARE-5 study
Dr Roberta De Angelis presented information for the first results that haven been drawn from Eurocare-5 study. The Eurocare-5 study looks at the survival and care of cancer patients in Europe.
The project has been going for some years and has grown with each iteration. Increases in numbers of patients included, numbers of registries participating and is now from 12 European countries with incidence and survival data available.
Because the data is now stretching back some years and has been validated and improved by some hardlined protocols and rules, they are now able to utilise the data for the purposes of good reporting. There have been a great many results and documents produced from this data and is accessible on their website, including reports with reference to the relative survival in Europe for breast cancer patients.
Dr Martine Bomb, Programme Manager, Cancer Research UK
The International Cancer Benchmarking Partnership (ICBP)
The ICBP is a unique and innovative global partnership of clinicians, academics and policymakers. Dr Martine Bomb was terrifically excited to be able to let us know that there were 4 papers about to be published (currently in final review) relating to their findings.
They have been particularly working with breast, colorectal, lung and ovarian cancer. The collaboration of their work spanning 12 jurisdictions in 6 countries and 3 continents and trying to establish WHY cancer survival rates vary between countries and jurisdictions.
I think its also important to note that the first phase of this project was funded by NCAT (National Cancer Action Team in the UK) but the next phases are to be funded by each jurisdiction contributing to the cost. Hopefully this will not mean that things will slip due to funding issues but that the impetus of the work already undertaken and published will keep the project going and growing.
A link to some of the ICBP publications can be found here
Dr David Brewster, Director, Scottish Cancer Registry introduced the first afternoon session
Alan Slater, Cancer Research UK
Using data visualisation to engage the public and to communicate the messages to cancer research and control – presentation
Alan Slater, as always, gave an engaged presentation relating to data. I know it’s a little difficult to imagine how data can be engaging but really it is… I think I love it so much because I know how the experts, analysts, clinicians and researchers are improving the quality of the data, the breadth of where the data is retrieved from and then how the data can be interpreted to make a difference.
The first few slides of Alan’s presentation was using design and infographics from Facebook to show how the presentation of data can be deceptive. He then presented the data in a different way and then a further method – same data but a very different visualisation and view.
His presentation and many different ways of presenting data, highlighted that it is terrifically important to know and understand your audience. To present data accurately and specifically for the audience but not in a way that it appears to be false or inaccurate but perhaps simplified or indeed in depth.
He also provided a list of good tools that could be used for data visualisation tools. But importantly he also confirmed what we all know (we being involved patients or patient advocates) is that data is important in a patients decision making processes and the patients should be empowered with information provided accurately and told well.
David Ardron, Lay member, National Cancer Intelligence Network Steering Group
What s a Kaplan-Meier Plot anyway? – presentation
David’s presentation into what a Kaplan-Meier Plot really is was a very personal one. He used the case of his father to demonstrate the need for patient involvement, the value of choice and quality of life. It also spoke of learning from examples past and present.
Sarah Stevens, Eastern Cancer Registration and Information Centre
Insight Track; a new tool for visualising and following the patient pathway – presentation
Sarah’s presentation related to ENCORE data. A great deal of the issues that she spoke of with regard to data input, transfer, value and use had been covered by a great many previous speakers. However one line she said really did resonate we should use data registries such as ECRIC in order to “Fight cancer with information”
The final and closing plenary session was chaired by Richard Stephens, Chair, National Cancer Research Institute Consumer Liaison Group.
Often when we’re talking about cancer data, information and resources, we hear only about the ‘main’ cancer types. So it was very refreshing to have Simon Davies speak at the closing of the conference about the importance of data with regard to rare or less common cancers. 53% of deaths in the UK are attributable to cancers that are defined as rare or less common. However the difficulty is that of those 53% there are many different types of rare or less common cancer types!
Simon spoke of Cancer52 which now represents 57 cancer charities and work together to ensure that rare and less common cancers are on the agenda for research, discussion, information and support.
Mike Richards, National Cancer Director for England
National cancer intelligence: where now; where next? – presentation
Mike advised that the NCIN is to be moved into Public Health England. What this should mean is that is has more governance within the health arena in the UK. He spoke of where the information was obtained, where it should be accessed and how it should be used.
We also learnt that there is to be a new collection of genetic information added to the NCIN dataset in the near future. It is hoped that this will lead to better output, better and more accurate commissioning and all this in a time effective period.
Mike’s final point was “Most importantly – cancer intelligence will be THE primary driver of improved outcomes – as a lever in itself and as the bases for other incentives (e.g. financial)”.
My conclusions of the conference. Data is valuable. But it’s only as good as the input data in order to accurately be used. There needs to be buy-in from multiple levels of people, organisation, jurisdiction, continent and countries.