Better Data. Better Lives.

As the Data Lead, in Macmillan’s Evidence Department, World Statistics Day is right up my street as a chance to geek out in public for the day! The tag line, “Better data. Better lives.”, of World Statistics Day is also a perfect fit to describe the work of my team and one of the reasons why the Macmillan Evidence Department has been growing since the day I joined over five years ago.

I’ve been working with numbers and statistics all my career from monitoring social trends, interrogating census data and now focusing on cancer and health statistics. Yet it wasn’t until I came to Macmillan and first learnt the startling statistic that – in 2010 there were 2 million people living with cancer (Maddams et al., 2009) – that I really saw the use of data and evidence to make change in action. By the way we now estimate there are 2.5 million people living with cancer in 2015 which is rising to 4 million by 2030 (Maddams et al., 2012).

We don’t just stop there. We know how many people are living with cancer but we need to use this alongside other evidence, methods and sources to truly understand their experiences and needs, particularly unmet needs.

One example is the research we carried out to explore the social care needs of people living with cancer (Macmillan, 2015) which won a first prize poster award at this year’s NCIN Cancer Outcomes Conference. We found that the social care needs of people with cancer are far more widespread than expected. Macmillan will be using this research to support our programme of strategic engagement and partnerships with local authorities and other partners, with the aim of improving and better integrating the planning and provision of personal, practical, emotional, and financial care and support for people living with cancer.

Our Rich picture on the 2.5 million people with cancer begins to draw together this and  wider evidence on numbers needs and experiences so that we and our partners can use this knowledge to inform our work, strategy and direction and improve the lives of everyone living with cancer.

In this increasingly evidence hungry environment with a demand for more granular data, ‘big data’ analysis and data visualisation we are already making data and statistics work harder for us, for example:

2.5 million - cut

Excitingly there’s so much more we can do and we have big aspirations on how we use evidence and data (described in this short video) to drive service improvement for people living with cancer so watch this space!

Look out for our tweets on World Statistics Day from @Mac_Evidence for some of the key statistics we produce and use.

Author: Hannah McConnell, Data Lead in the Evidence Department at Macmillan Cancer Support.

Image – 1: Maddams et al., 2012; 2: ‘Five-years’ refers to 2010-2015.

References:

Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. Br J Cancer . 2009. 101: 541-547.

Maddams J, et al. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer. 2012. 107(7): 1195-1202. (Projections scenario 1). Macmillan analysis based on  extrapolation of 2010 and 2020 projections that the number of people living with cancer will hit an estimated 2.5 million in 2015.

Macmillan Cancer Support (2015) Hidden at Home – the social care needs of people with cancer. Bright Blue Research commissioned by Macmillan Cancer Support http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Carers/hidden-at-home.pdf (accessed September 2015)

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2 thoughts on “Better Data. Better Lives.

  1. ronnyallan

    Data is so important in cancer. Correct data is even more important! I am concerned that with my own particular cancer, the data out there is wrong and the problem starts at the point of recording cancer type (i.e. using ICD codes). Do you know if there is a drive going on to improve cancer reporting in the NHS. I’m also interested in the local cancer intelligence tool but couldn’t really see how to find my own cancer statistics. Is there an easy guide on how to do this please?

    Reply
    1. hmcconne11 Post author

      Thanks for your comment ronnyallan and apologies for the delayed response! Cancer registries across the UK are constantly aiming to improve the data collected and work very closely with hospital trusts on this – the UK and Ireland Association of Cancer Registries http://www.ukiacr.org/ report performance of registry data annually too.

      The Local Cancer Intelligence tool is aimed at commissioners of cancer services so you can look up a local CCG – although your need to know the names of it eg NHS Lambeth CCG (we are working to improve this search functionality). Am afraid at the moment the tool, only includes the top 4 cancer and select cancers in the cancer type section this is version 1 and we plan to improve and extend the info included. There is a webinar here which talks you through the tool, its quite long so you may want to skip through bits: https://www.youtube.com/watch?v=9GZUGSPgkqI&feature=youtu.be

      You may also be interested in the tool – http://www.mycancertreatment.nhs.uk/ if you haven’t seen before too.

      Please share any further feedback on either at evidence@macmillan.org.uk

      Reply

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