Health and social care: data strategy

Supporting Research and Innovation

We will support research and innovation by facilitating safe access to health and social care data for industry, innovators and researchers, so that we can work together to develop better ways of working, better treatments, new medicines and improved services for care in Scotland

Background

Our health and social care services are under huge pressure as we recover from the pandemic and we must harness research-driven innovation if we are to: address the backlog in care; meet the ongoing healthcare needs of people across Scotland; and tackle long standing health inequalities. By working in partnership across the health and social care sector, academia and industry, we can prioritise the development and adoption of high impact innovations that can deliver longer, healthier, happier lives.

The data that is generated through the delivery of health and social care provides a wealth of opportunities for research and innovation that can:

• improve understanding of health, wellbeing, ill health, inequalities, poverty and the factors that influence them;
• monitor and assess the safety and effectiveness of care;
• support individuals, carers and clinicians to manage health conditions more effectively;
• evaluate new approaches to detect, prevent and treat diseases;
• develop new improved tests, medicines, and health and social care services;
• allow people to participate in health and social care research studies and trials through digitally supported enrolment and follow up, accelerating research delivery;
• assess progress towards reducing inequalities of access, experiences and outcomes.

In Scotland, we benefit from having five Data Safe Havens (also known as Trusted Research Environments or Secure Data Environments) that are operated by specialist staff often in collaboration with Scottish Universities. Data Safe Havens operate under the governance of the NHS with strict controls on data access, with use restricted to approved researchers and only for approved projects. The five Safe Havens are comprised of four regional safe havens in Aberdeen, Dundee, Edinburgh, and Glasgow, alongside our national safe haven run by Public Health Scotland and hosted by the Edinburgh Parallel Computing Centre.

Furthermore, Research Data Scotland was launch by the Scottish Government and partners to promote health and social wellbeing in Scotland by enabling access to public sector data, including health and social care data.

Where we are now

Throughout our engagement and consultation on this Strategy we heard broad support for using data for research and innovation, and that research and innovation is vitally important to transforming care, improving population health and brings wider societal and economic benefits in partnership with industry. It is widely acknowledged that the wide range of data collected by social care organisations, local authorities, the NHS and the ability to link health data through the CHI number (and its next iteration) has huge potential as a resource for research and innovation. However, it is also recognised that data assets are not used to the full, and that challenges to their optimal use exist, including:

• discovering what data exists and where to look for it
• bringing data together that is often separated and in unstandardised forms, needing extensive processing before being research and innovation ready
• access and approval routes may be not well understood, and may be challenging for researchers and innovators to navigate
• more clarity is needed on the terms for engagement, access and use of NHS generated data for industry projects
• using data to offer opportunities for people to participate in health research studies and trials and for more efficient research delivery.

It is vitally important that we address these challenges in order to make the most of the opportunities for research and innovation, and to realise the consequent benefits for patients, population health, the health and care system, and the wider society and economy of Scotland.

Many of the developments set out elsewhere in this Strategy will help to address these challenges including plans for streamlining information governance, updating clinical coding arrangements, new infrastructure such as the National Digital Platform, National Clinical Data Store, Seer and the launch of Research Data Scotland. In this respect, it is important that use of data for research and innovation is built into the design of all new developments set out in this Strategy and that this includes the data generated from new and emerging healthcare technologies such as AI, genomic sequencing and remote monitoring. This will be supported by an end-to-end innovation pathway that brings together our regional Test Beds and national Accelerated National Innovation Adoption programme. Achieving this will only be possible through prompt access to NHS data and its effective analysis. Nevertheless, there are a number of areas where further specific action in support of research and innovation is needed.

Under the Administrative Data Research (ADR) Scotland programme and the Health Data Research National Core Studies programme, a significant number of datasets have been brought into the National Data Safe Haven. These can be used to service multiple research projects. Currently, a researcher can discover what data is available through theResearch Data Scotland data catalogue.

Researchers then put together an application form for use of that data to a Public Benefit and Privacy Panel.

There are robust safeguards and controls in place, protecting individual privacy and confidentiality and demonstrating use in the public interest. The safeguards include:

• restricting and de-identifying data so information which is not required for the research and which would allow individuals to be identified is stripped away;
• making data available through our Data Safe Havens;
• mandatory approval of research and innovation projects before they begin following review by experts such as those of the Public Benefit and Privacy Panel for Health and Social Care.

Case Study – Public Benefit and Privacy Panel for Health and Social Care

NHS Scotland Public Benefit and Privacy Panel for Health and Social Care (HSC-PBPP) is a governance panel that scrutinises applications for access to NHS Scotland health data for non-direct care. Its role is to ensure that applicants have thought through the public benefit and privacy implications of the proposal.

This means a research applicant must complete one form for the necessary scrutiny process, and work with a set point of contact in Public Health Scotland (PHS) electronic Data Research and Innovation Service (eDRIS) to help develop their application and bring together the necessary authorisations, permissions, and certifications to be in position to access NHS Scotland national data.

The HSC-PBPP balances public benefit with potential risk to privacy and ensures that the public interest will be furthered by the proposal, as well as demonstrating that the social need for the processing of the data requested will result in tangible benefit for society.

Where we want to be

We want Scotland to have national health and care data that empowers research and innovation throughout health and social care. This means giving researchers and innovators from the public and private sectors clear, ethical and efficient routes to access and use data to take forward projects that support the modernisation of our health and social care service and deliver public benefit. However, in doing so we are committed to only allowing safe access to data where intended public benefit is clearly demonstrable. Access to Scotland’s health and social care data will not be approved purely for commercial purposes, such as marketing, financial gain, or the adjustment of insurance policies. We must also acknowledge that by collaborating with industry, innovators, and academia we can create economic value for Scotland in the form of high value jobs and investment, as well as social value in the form of improved public services and health outcomes.

We will transparently demonstrate and explain the safeguards in place and how they support research and innovation in the public interest, working with RDS, the four regional Data Safe Havens in Scotland, and the PBPP. In the future RDS will require researchers to clearly publish the anticipated public benefits arising from their use of health and social care data through their work on creating a searchable log of uses of data for research. The log will include the data involved, anticipated public benefit, and anticipated outcomes from the research.

To enhance our research and innovation offering and overcome the challenges currently faced, we must work in close partnership across Health Board Research and Development, e-Health, and Information Governance. By doing so, we will be best placed to explore the standardisation of our research infrastructure and examine how we can create an offering more representative of Scotland’s population.

RDS is leading work to transform the current health and care data access process with the aim of making access to data for research faster, simpler and more predictable. A new Information Governance approach will be introduced in 2023 which will mean that simple projects with precedent will be approved by eDRIS team staff rather than the PBPPs. RDS is working with partners to digitise the application process to reduce effort from researchers, to develop synthetic datasets that would help researchers form data requests and code, and to make changes to the way data is stored that reduces the time to assemble data for researchers once their request for data is approved. These changes will be delivered across 2023 and 2024.

Building on these developments and recognising the importance and value of strong partnership working between the Scotland’s care sector, NHS, Universities and the life sciences industry to drive research and innovation, we will clarify the terms for access and use of health and social care generated data for industry projects. This includes the approval and controlled access pathways to ensure ethical use in the public interest. This will be refined by the conclusions of the Scottish Government’s Unlocking the Value of Data programme led by an independent expert group on Unlocking the Value of Public Sector Data to guide how public interest of use of data by industry is assessed.

The Scottish Government will also work with NHS Research Scotland on how we might better capitalise on health data to support more efficient delivery of clinical research, including data enabled approaches to assessing study feasibility, and the identification, recruitment and follow up of research participants. This includes building on initiatives such as the Scottish Health Research Register (SHARE) that provide a route for people to volunteer for research, broadening the opportunities for research participation.

In making these improvements to the research and innovation environment, we must also acknowledge that the collection, storage and use of health data for research and innovation is at a more advanced stage than is the case for social care data. Further work is required to understand what social care data is required, with the additional complexities associated with much care data being generated outside of the public sector.

Our Commitments

We will seek to maximise the opportunities for data-driven research and innovation, with broad public support, to accelerate realisation of the public benefits.

Who is it for?

Research & Innovation
Public

Our Commitments

We will openly demonstrate and describe the uses, safeguards, and benefits of the use of health and care data for research and innovation.

Who is it for?

Research & Innovation
Public

Our Commitments

We will support access to health and social care data through trusted research and innovation environments, such as Scotland’s ‘Safe Havens’, with appropriate approval processes providing assurance that data is used in line with ethical principles.

Who is it for?

Research & Innovation
Public

Our Commitments

We will consider the use of data for research and innovation in the design of all new developments set out in this Strategy to maximise the opportunities and public benefits.

Who is it for?

Research & Innovation
Professionals