Health and social care - data strategy: consultation

7. Part 3 - Empowering Industry, Innovators and Researchers

We have an ambition to ensure opportunities for innovation, industry and research are driven by high quality data. This in turn will support the delivery of outstanding health and social care services that are able to integrate the findings of innovation and research.

Access to data for research and innovation

Our experience is that worthwhile projects often require large volumes of data and/or the joining of multiple datasets. However, identifiable personal information is not required for most research and innovation purposes. We know that by collaborating with industry, innovators, and academia we can create not only economic value for Scotland. We can also take advantage of opportunities to significantly improve our health and social care services with innovative technologies and approaches.

Engagement with professionals working in health and social care innovation, industry and academia has so far told us that Scotland's health and social care data should be recognised as a national asset. The value of this data to Scottish society and its economy is being examined and debated. We heard from industry and innovators that there is support for a 'Once for Scotland' approach to information governance, reducing the need for the work to be duplicated, therefore speeding up the time it takes to access data in a timely manner. That is why our Strategy will outline how we will work with the newly formed organisation, Research Data Scotland, to improve access to Scotland's health and social care data for research, whilst building on some of the truly world-class data-enabled research initiatives in Scotland such as EAVE II.

Our engagement also told us that there is widespread public support for harnessing data for public benefit (such as creating new drugs to combat Covid-19). However we also heard that there is less certainty over the sharing of data for some purposes, such as marketing, financial gain for others, or activity that could be perceived as amounting to 'privatisation' of health and social care services. We recognise these concerns and aspire to further develop a system which allows seamless and efficient access to data for research with well understood outcomes and benefits for people. One that is completely transparent and builds trust by people in the way innovators and researchers use health and social care data for the public good^[4].

Infrastructure

To facilitate appropriate access to health and social care data for research, we must create the right infrastructure that enables access in a manner that is both timely but also safe and secure. Engagement has told us that this is a precursor to greater innovation and use of data. The outcome of engagement sessions so far has shown that there is a strong appetite for real-time data sets (meaning data that is available for use immediately or shortly after being generated) for research and innovation use. Use of real-time data has the potential to benefit the ability to continuously improve services. We have heard that initial ambitions for the Strategy should be to create an infrastructure that allows researchers to access structured, and in some cases, real-time national health and social care data.

Innovative technologies

One area of innovation the Scottish Government wants to capitalise on is the use of Artificial Intelligence (AI), as set out in Scotland's AI strategy. AI techniques such as machine learning solutions are transforming the way healthcare is being delivered. The Data Strategy's focus on trust, ethics and inclusion will inform its position on use of AI in health and social care. Health and social care services have accumulated vast data sets in the form of health records and images, population data and clinical trial data. AI technologies are well suited to analyse this data and uncover patterns and insights that humans could not find on their own. With deep learning from AI, healthcare organisations can use algorithms to help professionals make better business and clinical decisions and improve the quality of health and social care services in Scotland. However, for this technology to be effective, the data must first be of a high quality, or its use risks having a detrimental impact on our services, both operationally and ethically – potentially increasing inequalities. Crucial to adopting these technologies is that their use is transparent, explainable, and justifiable to the recipients of health and social care services. We want to seek your views on this technology and understand what it means to you.

Sharing Scottish data with the rest of the UK

Occasionally there is also a need to share data out with Scotland (and for data from out with Scotland to be shared with us). This frequently arises when individuals move from Scotland to elsewhere in the UK. The response to Covid-19 has shown the benefits of sharing certain data across the UK, for example – including public health surveillance data to help model the impact of Covid-19 and vaccine information to help understand the impact on people with certain clinical conditions. Some sharing also relates to the regulatory nature of healthcare at a UK level, including in the regulation of healthcare professionals, medicines, and medical devices. Sharing Scotland's health and social care data and collaborating with our partners across the four nations of the United Kingdom we can better understand how to improve health and social care services and improve outcomes for individuals across the United Kingdom. We want to ensure we can continue to collaborate on shared endeavours with the rest of the United Kingdom in a safe and ethical way.

7.1. Questions Part C

12. When considering the ethics of accessing health and social care data for commercial, development and research purposes:

12A. How do you think health and social care data should be used by industry and innovators to improve health and social care outcomes?

12B. How can industry and innovators maintain the trust and confidence of the people of Scotland when using their health and social care data for research purposes?

12C. What do you believe would be unacceptable usage of Scotland's health and social care data by industry, innovators, and researchers?

12D. How should industry, innovators and researchers be transparent about their purposes in accessing, and the benefits of using, health and social care data?

13. We want to create an infrastructure that supports access to data for research and innovation in a safe, secure, and transparent way:

13A. How should the Scottish Government seek to store and share health and social care data for research in order that it can best facilitate easier access that is still safe and secure?

13B. What do you believe are the key data needs and gaps that are faced by industry, innovators, and researchers when it comes to Scotland's health and social care data?

14. Used appropriately and well, technologies such as Artificial Intelligence can help to improve decision making, empower health workers and delivery higher quality health and social care services to citizens, improving how you receive health and social care services:

14A. What are your views on the benefits of using AI to improve the delivery of health and social care services?

14B. What safeguards do you think need to be applied when using AI?