We live in an age where change happens more rapidly than at any other time in our history. Digital technology and the use of big data has transformed our world, so much so that we must continuously adapt or risk being left behind.

Diagnosing with Data – BioQuarter’s showpiece event at the Edinburgh Science Festival – tackled the topic of how we use data to revolutionise health and wellbeing. Professor Polly Arnold was joined onstage by experts from across academia and healthcare. Professor Nicholas Mills, Dr. Sarah Chan and Dr. Angus Ferguson enlightened the 50-strong audience at the Pleasance, providing valuable insights to a host of probing questions.

“We now make fantastic decisions about the care of individual patients by using multiple sources of data. But we are not using these sources strategically as an organisation. By working together, we can use routinely collected healthcare data to evaluate and transform the services we provide in Scotland,” said Prof. Nicholas Mills, Consultant Cardiologist, in response to a question on the use of data in healthcare.

 

He continued: “Some decisions about how we use big data in the NHS need to be taken now in order to ensure this is transformational. If we really want to prevent disease and address our aging populations healthcare needs, then we need primary and secondary care teams to share and use real-time data on a daily basis.”

Ethics, security, public awareness and commercial uses of data were some of the key themes which emerged on the night.

“We need to work out how private and public sectors can work together when using health data to benefit patients,” commented Dr. Sarah Chan, an expert in research ethics at the University of Edinburgh. “It’s also important that we don’t inadvertently introduce inequalities in healthcare provision by relying on data that is not equally available and reliable across the whole population,” She added.

A 2018 study carried out by understandingpatientdata.org.uk found “low levels of general awareness of how patient data is being used beyond individual care”.

Dr. Angus Ferguson, a lay representative on the Public Benefit and Privacy Panel for Health and Social Care, felt awareness raising to be vitally important: “People are generally very happy to give their data to the NHS because of their trust in the brand. However there is far less trust in giving that data to the private sector.

 

“The biggest risk around the use of patient data is that the public is left behind and that we lose public trust,” Dr Ferguson continued, “my worry is that there isn’t enough investment in making people aware of what it’s all about. The privacy element and benefit element shouldn’t be seen in opposition to each other, we want to promote public trust in the systems that are in place.”

At Edinburgh BioQuarter “big data” is firmly rooted in its current and future plans. The £1.3bn City Region Deal will help deliver a new building for the Usher Institute for Population Health Sciences and Informatics at the site. It is clear that linkages between health data experts and clinicians – delivering care at the Royal Infirmary of Edinburgh – based at BioQuarter are already bearing fruit.

Prof. Mills explained: “We’re already evaluating an artificial intelligence (AI) system for triage within NHS Lothian. Very quickly the system has made a really positive impact and the consultants using it have been impressed by it. It has freed up more time for them to be with patients.”