In data we trust

Recent developments in the health data landscape

Tuesday 27th November 2018

As it’s Digital Health & Care Week, we take a particular look at recent developments related to the role of data in developing approaches to care in Scotland.

While it seems unlikely the words of British economist, Ronald Coase, will ever lose their relevance in politics – “torture the data, and it will confess to anything” – we are in an age where the mantra that “data is king” is spreading.

The most recent meeting of the Life Sciences Cross-Party Group (CPG) in the Scottish Parliament, convened by Kenneth Gibson MSP, heard contributions from various members of the medicines, medical devices and healthcare industry and academia, all keen to promote the possibilities of health data to deliver improved outcomes.

The recently inducted Minister for Trade, Investment & Innovation, Ivan McKee, is proving himself to be a data enthusiast. When the potential for data protection issues to act as roadblocks to the “significant growth trajectory” of Scotland’s life science sector was put to him during the CPG, he queried whether this was more of a perception and not the reality for data gathering, not least given the strict controls placed on how people’s health data can be used. He declared his desire to push forward “as far as possible” any proposals brought to him related to data health capabilities and assured attendees opportunities to achieve safer and more cost-effective care through the use of data was high on the agendas of his ministerial colleagues, Joe Fitzpatrick and Jeane Freeman.

A presentation by Dr Iain Findlay, recently retired Consultant Cardiologist, NHS Greater Glasgow and Clyde and Prof Colin McCowan, Professor of Health Informatics, Robertson Centre for Biostatistics at the University of Glasgow, focused on a joint working collaboration between NHS Greater Glasgow and Clyde, the Golden Jubilee National Hospital, the University of Glasgow, the DataLab and AstraZeneca UK. While tracking the journeys and outcomes of patients with acute myocardial infarction in the context of a “complex, acute healthcare system”, the collaboration delivered a near real-time electronic ACS (Acute Coronary Syndromes) registry, demonstrating how existing data could be made to “work harder” and deliver a clearer picture that could impact work in a number of areas, notably in unwarranted variation.

The suggestion was made however that more honesty was needed in discussions that focused on the extent to which data was being turned into information that clinicians could use to deliver better and different care to patients. Some of those in attendance conceded Scotland was indeed on the cusp of falling behind other nations in its ability to use real-world data to influence patient outcomes, and a concerted effort was needed to ensure Scotland realised its data-driven potential.

Subsequent to the CPG, the risks posed by Brexit to the sector were laid out in a publication from the Scottish Government, titled Scotland’s Place in Europe: Science and Research. The paper set out the implications of Brexit for Scotland and “constructive alternatives”. The importance of international collaboration is outlined alongside the benefits of continued involvement in programmes such as Horizon 2020. On the same day, First Minister, Nicola Sturgeon, announced £5m of funding from the national Interface programme was to be invested in Scottish businesses to match them to Scotland’s “world-leading academic expertise” in pursuit of “practical industry innovation”.

Since then, there have been developments on a number of fronts. From news from the UK Government that the Industrial Centre for Artificial Intelligence Research in Digital Diagnostics (iCAIRD) is to open in Glasgow, which will bring together experts to explore the role of AI in treating strokes and some types of cancer, to the launch of a new directory to link industry with NHS clinical, academic and trade organisations during the Scotsman Life Sciences Conference, the status of data is rising. The new directory, launched by Glasgow co-chair of the Life Sciences Scotland Industry Leadership Group, Dave Tudor, is described as an “easily searchable database” and is to be known as the Scottish Health Research & Innovation Ecosystem. Its function sits well with the priorities outlined at the Life Sciences CPG, to see better links between those in industry looking to develop innovative treatments and techniques with those in clinical, academic and trade organisation roles keen to advance new approaches to patient care.

During the Safeguarding Research Collaborations & Scientific Excellence debate in the Scottish Parliament that took place on Wednesday 7th November, Conservative speakers gave assurances the UK Government was acting to achieve an “orderly and negotiated” Brexit and reiterated their desire to see the UK Government “ensure that the visa system is structured to attract students and staff of the highest calibre to work in UK universities and research centres”. However, Scotland’s Minister for Further Education, Higher Education & Science, Richard Lochhead, raised concerns and cited the results of a survey carried out by trade union body, Prospect, which found 70% of EU scientists in the UK were thinking of leaving after Brexit. While Jamie Greene MSP (West Scotland) (Con) suggested there was little sign of a slowing down in participation in research on the international stage and offered the formation of the iCAIRD facility as evidence, the Liberal Democrats highlighted a survey carried out within the Francis Crick Institute in London that found 97% of staff thought a hard Brexit would be damaging for UK science. After Labour speakers called for the UK Government to listen to warnings from leading academics of the “dire consequences” stemming from Brexit, Gil Paterson MSP (Clydebank & Milngavie) (SNP) highlighted the cessation of trials of a new heart drug by Recardio due to uncertainty around EU withdrawal, specifically over whether the European Medicines Agency would accept data generated in the UK post-Brexit.

This year’s Digital Health & Care Week has catalysed a panoply of activity and includes the Digital Health & Social Care Conference. The focus this year is on the recommendations of the Scottish Government’s Digital Health & Social Care Strategy: Enabling, Connecting and Empowering and progress in the implementation of digitally enabled services.