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Embracing the use of data ..

Steph Wright

24th August 2018

A version of this was originally published as an Opinion Piece for the ALLIANCE website on 21 August 2018

Data, data everywhere…. We are told that our lives today generate more data than ever before. Everything, from your smart meter and your Netflix watching habits to your Fitbit and your Facebook/Twitter/Instagram/[insert whatever flavour of social media you fancy here!] activity, produces data about you. But not everyone has a smart meter, or watches Netflix or uses social media. So what is the fuss all about?

There is one type of data that we all have in common though … and that is our healthcare data. The data that the NHS has on us… whether it’s data about our birth, or when we went to our GP, or when we visited our dentist, or when we got our vaccinations or when you were prescribed something.

I manage a project called the Cancer Innovation Challenge (CIC) which is funded by the Scottish Government through the Scottish Funding Council and the project’s aim is to encourage open innovation in data to help Scotland become a world leading carer in cancer. That was a mouthful wasn’t it? But what does innovation really mean? For me, it means doing something new and different… whether developing a new product, or using a new process, or using what already exists in a new way and doing all this to make things work better.

So the CIC poses the question of how can we use the data we have or data we have yet to collect to make things better for those living with cancer in Scotland?

The challenge has two strands the first of which involves patient reported data (i.e. data provided by the patients themselves whether in response to specific questions or on a scale for various aspects of how they’re doing e.g. fatigue, pain, nausea etc) and integrating that into their care. We have two great companies, My Clinical Outcomes and Px HealthCare currently working on this. My Clinical Outcomes are currently evaluating their web based tool with blood cancer patients in the Ayrshire & Arran region and Px HealthCare are doing the same with their OWise app in the Lothians with breast cancer patients. Both projects are about using technology to put the patient at the centre of how they are treated and incorporating how each individual patient is responding to treatment into their overall care.

The second strand is about how data science can be applied to existing data to improve cancer care. For this, we have Canon Medical Research Europe (an Edinburgh based company) developing an artificial intelligence (AI) powered prototype tool applied to CT scans to improve assessment of malignant pleural mesothelioma (MPM known as the ‘asbestos’ cancer) with NHS Greater Glasgow and Clyde. If successful with MPM (a notoriously difficult cancer to measure due to its non-spherical shape), Canon’s prototype will lead to an AI tool that will recognise, assess and measure a wide range of cancer tumours.

Both strands involve projects that can help enable shared/informed decision making, improve clinical trials, enable precision medicine (where treatments are customised to the individual patient based on genetic, environment and lifestyle factors), increase access to resources, and increase efficacy of care. And this is only a snippet of how data can be used to improve and save lives.

But of course things aren’t that easy (are they ever?). NHS Scotland’s systems have been built over decades in bits and pieces by each different health board at different times using different suppliers and this presents a big challenge in data sharing. Also, the data needs to be secure and patients and citizens need to be assured of this security and trust that access is only used for their benefit and not for company profits or nefarious reasons (such as the recent Facebook scandal).

Things are looking up though! With the Digital Health & Care Strategy launched by the Scottish Government earlier this year, the Scottish Cancer Registry and Intelligence Service (SCRIS), and the recently announced National Digital Service, the signs that we are indeed embracing the use of data to make our lives better, and to save lives, are becoming clearer. The Cancer Innovation Challenge may just be looking at improving cancer care but there’s no end to the potential for data to improve health and social care for all in Scotland. #DataSavesLives

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