I started to campaign about the lack of data and statistics for secondary breast cancer back at the end of 2015 as I knew of the Breast Cancer Care campaign #notsecondrate. I wanted to highlight secondary breast cancer to my local MP Debbie Abrahams, whom I met at a local “surgery” she held one Saturday morning. This is my blog about what happened and the meeting I then had in parliament with Heidi Alexander (the then Shadow Health Secretary):http://www.abcdiagnosis.co.uk/2016/07/10/we-did-them-proud/
What we needed to know first about data and statistics was:
Where they are collected
Who uses them
The NHS has different systems across the UK for collecting data so we need to make sure this IS happening.
How can this information be used for NHS purpose ie support services and growing needs for living with and beyond cancer (all talked about but no substance of confirming how many need to access these important services). So for example the question BCCare are asking is do secondary “breast cancer patients have a clinical nurse specialist?” We cannot put these measures into place if we don’t know how many people need these services.
The issues are not just around data and statistics but around pharma and drug pricing. This is a problem if it means patients are denied life extending drugs.
From the Pink Ribbon Breast Cancer Drugs Funding and Trials conference my contact from Public Health England put me in touch with another colleague from Public Health England. In June 2017 I was invited to a Public Health England National Cancer Registration and Analysis Service (NCRAS) conference about Cancer Data and Outcomes. We had talked on the phone over a few weeks and Karen (the contact) told me that from my meeting in parliament (I knew parliamentary questions were written) her Manager saw these questions asked and asked her why this was not happening. Karen decided to write her PDR (Personal Development Review) around tackling this issue. So she set to work, changing the data set and adding to the data set. The changes to any programme take around a year to be applied to I am now told that by April 2018 the following will be added to the data set as they were all on my wish list:
- Sex (men get BC too!)
- pre or post menopause (this can make a huge difference for treatment and risk of mets)
- Year of diagnose
- Type original BC
- Year of re diagnosis
- Local or distant metastasis
- Type on recurrence BC (the biology CAN change)
- De novo BC
- Cause of death and date (really, really important!)*
- BRCA status if there is a genetic issue
If we don’t get all this info then there’s no point in collecting bog standard data it’s meaningless numbers – the above is giving more quality data – that’s what we want.
*Death certificates with the right information – it’s not always recorded as SBC – maybe called liver failure instead of secondary breast cancer to the liver. Pneumonia maybe due to secondary breast cancer etc etc.
I also mentioned the MBC Project in the USA headed by Dr Nikhil Wagle and Corrie Painter https://www.mbcproject.org/
Why not have a UK arm of this project? The whole reason is to help create more knowledge about the disease so that we can get better research to get better drugs to stop people dying – we need SBC to be a chronic disease not a terminal disease. Over 11,000 die every year and due to social media you see more and more deaths – this is unacceptable and good data and statistics can help to change this. Of course, we know this won’t happen immediately, but even if we can change things for the future then we HAVE to try.
It would also be good for clinical researchers to access this data for them to use within their research setting to support more targeted research.
This won’t be happening for breast cancer alone but this will now be collected for ALL secondary cancers. I had highlighted this fact from the start – if this didn’t happen for breast cancer then it will NOT be happening for ANY secondary cancers. Karen has therefore implemented changes to the programme for other cancers and data collection. Karen has worked hard on this information since the initial request from her Manager via parliamentary questions and done what is urgently required. At the conference she showed all the information that was gathered and how each hospital can access their specific data.
The issue NOW is getting the data inputer (within the NHS) to submit the correct data (or any at all). Karen is touring the country to hold workshops on how to collect the right data for specific NHS data staff. The BCCare campaign #notsecondrate highlights which areas need to improve data collection and I know Karen keeps data on who is and isn’t collecting so she will also be able to identify where she needs to concentrate her efforts.
In July 2017 I took Karen to the Greater Manchester Breast Pathway Board where I attend as SBC Patient Representative. When I joined in April 2016 this matter was an issue that they wanted to address. With a little help from me it looks like this problem is well on it’s way to being addressed. Don’t get me wrong, I’m sure there will be hiccups and problems but Karen explained what she was doing and has offered the pathway board one to one support to get this done and is passionate about getting it done right. She knows this is imperative for supporting secondary cancer patients like me.
Now we just need the NHS to understand the importance of the data collectors and for them to get inputting the correct data.
NOW I can “move on” from this problem as I was once told. But as we know, I’m sure that this will not be as simple as it all sounds and this issue will continue to raise its head and be a problem. It will take a least 18 months for data to start coming through so in early 2020 there should some data to share.
As the saying goes, if you want something done, well do it yourself.