Progress on delivery of high quality, timely data and analysis – how is access to data for rare and less common cancers improving?
Jo Lenaghan, Director of Strategy and Workforce Planning
Health Education England. The Cancer Workforce Plan Phase 1 was published at Britain Against Cancer at the end of 2017. Now we have an opportunity to discuss with Health Education England what the very early thinking for process for phase 2 looks like and how we keep rare and less common cancers on the agenda.
Becky Clack, Programme Manager (Living With and Beyond Cancer) and
Niall Smith, Communications Manager. Both of National Cancer Programme Operations & Information Directorate NHS England. Living With and Beyond Cancer –
A discussion about what Cancer52 members are doing in this area, health and wellbeing support offers for patients, how NHSE can address some of the barriers and challenges and opportunities to work together. Engagement – a chance for Cancer52 members to hear about NHSE communications and engagement plans and how to stay involved with the programme.
Heidi Livingstone, Public Involvement Adviser, Public Involvement Programme
and Jenna Dilkes, Programme Manager – Planning and Operations Technology Appraisals, Both of NICE. A second consultation on changes to the technology appraisal process at NICE is about to launch. Key speakers from NICE will explain more about the process, how the changes will affect patient involvement.
One of the most interesting initiatives discussed was better use of data to improve diagnosis and treatment for patients, which was presented by Dr Jem Rashbass who is the National Director of Disease Registration and Cancer Analysis for Public Health Information.
This is through a tool called the ‘Patient Viewer’ which is an online display tool producing an interactive personal summary of all the care of an individual cancer patient. This works by taking data from a range of sources and automatically generates a dashboard, time-line and map to show where and when the patient has been treated.
Often a problem for less common cancers is, because fewer people are affected by them, it is difficult to get enough data to produce statistics that can effectively inform change.
Quite simply, the amount of people in a study effects the statistical analysis. So, when it comes to analysing data, if you have less people this means having less statistical ‘power’. What this means for analysing data is when the statistical power is smaller, there may be a chance that you might not see an effect EVEN if there is one.
The other problem faced by people concerned with data analysis of less common cancers is maintaining patient confidentiality. Particularly for the rarest forms of cancer, if you are not careful it would be theoretically possible to work out who a patient is even if the data is fully anonymised. Dr Rashbass’ team have successfully managed to overcome this problem by implementing a clever system.
What is needed, is to collate and utilise data from cancer patients so we can understand the cancer pathways better (genetic risk, lifestyle, presentation, diagnosis, treatment, follow-up, palliative care and death).
So, what has been done and created by Dr Rashbass’ team is a way to have all this data and put it in a platform, ‘the patient viewer’, whereby an individual’s cancer pathway can be seen by medical professionals and the patients themselves.
How will the new data ‘patient viewer’ benefit patients and outcomes?
This has been created, but hasn’t been implemented in the NHS. The impression Dr Rashbass gave however, is that this is ready to go, it is just a case of the funding for this to be put in place in the NHS. When this does happen, it means that medical professionals will be able to have access to patient data and be able to see an individual’s cancer pathway.
What this involves is: your personal details (such as a patient’s demographics: age, gender, ethnicity), the exact dates of your treatments, when you attended the treatments, and your medical history (for example, any past operations or other medical issues you may have had or currently have). This will make the patient’s care much more personal, quicker and easier for medical professionals to make more informed decisions.
This has been piloted with Brain Tumour Trust and will hopefully, in the next few months, be accessible for more charities to use.
There will also be a patient predictor. This data aims to predict, using individuals who have gone through a similar pattern to yourself, how they have reacted with treatments or what they have gone through. Although it’s important to remember you are an individual and everyone is different this may be a useful guideline to understand going forward.
To see the patient viewer please click here: https://healthdatainsight.org.uk/project/patient-viewer/
The COMPASS Dashboard
Dr Rashbass’ team have also been working on a new platform to better display cancer statistics. This is also not yet available on general release.
The data will be protected so personal information cannot be accessed. However, if you would like to know about certain cancer information, for example, the latest stats on pancreatic cancer; this will be able to be produced into presentable information, rather than just a produced spreadsheet of data. This will be given to charities so we can present this information to you.
This means for medical professionals the data can be quickly understood, but also the patient’s data will be presented so you can see all the latest information, which will be continuously updated as soon as the data is out. What’s great about this, is that the data is high quality and crucially, constantly being updated. The current approach now means that stats can take a long time to be published and in a raw data set. This updated approach will be extremely helpful for everyone to have the most up to date knowledge on cancer statistics in England.
The Cancer Workforce Plan
Jo Lenaghan, Director of Strategy and Workforce Planning, Health Education Planning was at Cancer52 sharing the latest update about Phase 1. The planning stage, of The Cancer Workforce Plan is complete. Published at Britain Against Cancer in December, To view the Cancer Workforce Plan please click here.
Phase 1 of the plan is to maintain the workforce that the NHS currently holds, particularly at the more senior clinical level. Phase 2 is concerned with where to drive recruitment for future generations. Phase 2 is very much at the beginning stage. Jo and her team are considering where the future of medicine will take us and how to invest accordingly. For example, will there be an increase in the use of AI in medicine which will require fewer pathologists. The answers are complex and difficult to predict, but one we will follow with keen interest.
Personalised care plan
Becky Clack, Programme Manager (Living With and Beyond Cancer) spoke on the work that NHS England are doing to support those who are living with and beyond cancer. By 2020 those diagnosed with cancer will have a personalised care plan that extends beyond their current treatment plan. Included will be information such as health and wellbeing advice and how to recognise recurrence warning signs. At this stage it is not clear how much this will benefit patients with pancreatic cancer.
The final speakers of the day were Heidi Livingstone and Jenna Dikes from NICE they gave an update to a change in their processes that would make technology appraisals. This involves adding another step in the process NICE takes when they get new research and then decide if this should be considered in the NICE guidelines. They informed us that through tweaks to their system, they will now be able to carry out more appraisals each year whilst maintaining the same rigorous standard.
What is Cancer52?
Cancer52 is a charity that represents over 90, mainly small, patient support charities. Around 46% of cancers are rare or less common, yet they account for 54% of cancer deaths. Cancer52 is a way of bringing these small charities to the forefront, supporting the rare and less common cancers in order to help us work together to improve diagnosis, support and treatment. Pancreatic Cancer Action is a proud member of Cancer52.
If you would like more information on Cancer52 please see their website.