Digital health and care strategy

Data-Driven Services and Insights

Priority six: Data is harnessed to the benefit of citizens, services and innovation.

People wonder why their health and care records don't move with them when they move. They are surprised that hospitals and GPs can't share medication lists, or that their doctor doesn't link with their care support worker to coordinate support. They get frustrated that they are asked the same questions at every appointment with different workers in different parts of the health and care system. Data about an individual is often held in multiple different places, making it difficult for people providing support across health and care to access the most relevant, up-to-date information. This makes effective delivery of care, and continuity of care across different service providers and over time as care needs change, more challenging than it needs to be. It also hampers planning and development of services, research, and continuous improvement.

If digital is the engine of our health and care system, data is its fuel. In our 2018 Strategy, we recognised the importance of data, particularly in relation to opening up access to citizens and staff, and how we managed access to health and care data for research and innovation. However, whilst we have some of the best world-class data resources at our disposal, there remain considerable data gaps and we are information poor in a number of areas. Covid-19 has exposed real gaps across health and social care which hindered the response to Covid-19. These are gaps we must address. There is also poor data collection in areas such as ethnicity and inequalities, which has hampered our ability to design appropriately targeted support and to fully understand the impact of Covid-19 on different ethnic groups. As dependencies on AI and new algorithms to support health and care decision making grow, this will likely highlight further gaps that need to be addressed.

For example, aligned with our Women's Health Plan (Women's Health Plan - gov.scot (www.gov.scot), the gender data gap and its increasingly well documented detrimental impact on the delivery of high-quality timely healthcare, from diagnosis through to treatment methods, is a known gap in many areas that needs to be addressed.

While we have a wealth of data that exists through clinical trials on the safety and general efficacy of specific medicines/drugs, we need to better understand the real-world impact of our medicines, the outcomes they are facilitating, and an understanding of what drugs work best for which people.

Information Governance (IG), assurance, and cyber and data security lie at the heart of the work we do – without it data will not flow across the services, and people will not feel trust in our ability to keep data safe. This strategy depends on the development of a consistent and national approach to our IG landscape, and a clearly defined set of cybersecurity assurances will be at the heart of the Data Strategy. This strategy and accompanying programme of work, will set out how we improve access to data and digital technologies, resolve inconsistencies in decision-making and collectively manage risk, all built around citizen choice and control. This will resolve issues of lengthy waits to access data, improve our security capabilities, and help individuals to take ownership of IG.

The Shielding List: good data can save lives

At the outset of the pandemic, we knew we needed to protect our most clinically vulnerable members of society. To do this, we created a national 'Shielding List', based on criteria agreed by the UK's four Chief Medical Officers. It quickly became clear, however, that implementation was going to be a challenge. Being able to identify, and notify, individuals at risk at a national level was not straightforward as there were differences in approach across different health boards to recording data. This meant there was a need for urgent work to develop coding to generate the necessary data rapidly at a national level. There is now a well-functioning approach to identifying and notifying patients deemed to be at highest risk. Nonetheless, underlying issues of inconsistent coding remain – which our renewed focus on standards and a commitment to fully implement SNOMED (see page 19) will seek to resolve.

That is why this strategy commits to the development of Scotland's first-ever dedicated Data Strategy for Health and Social Care. This will include detailed consideration of how to increase citizens' trust and transparency in data sharing, how to unlock the value of health and care data and how the tricky challenges around safeguarding our data can be addressed, as well as consider aspects such as ethics, standards, relationship with industry and legislative requirements.

Key to successful delivery of the Data Strategy will be the ongoing public and professional dialogue that will be required throughout the process, building on our work over the past few years with NESTA on Data dialogues and in line with our Open Government commitments. Through NESTA, we are in the process of refining an online dialogue tool, and will utilise the research conducted through the data dialogues programme on approaches to participatory public engagement (e.g. immersive theatre, gamification, pop-up interactive exhibitions). Public trust in what we are doing, and growing public understanding in the value of data, is essential.

Personal Data

• Care Services
• Friends and Family
• Social Security
• Eligibility
• Identity
• Home and Community
• Devices and Wearables
• Health Service

The Data Strategy will lay the groundwork for a radical shift in the power dynamic between the 'state' largely controlling how and when data is used, to one where citizens are in far greater control over their own data. Although we are talking about a Data Strategy for Health and Social Care, it will also encompass data from any sources that can better improve individual outcomes. Whilst that is the principal aim, we are also looking at improvements in how data is used more broadly. These include but are not limited to service delivery, innovations, research and economic benefits. The strategy will also outline the skills, information governance, legal and standards frameworks that need to be in place.

Dialogues about data

Our work with NESTA, and research elsewhere, suggests people have a complex relationship with data.

Some people recognise the value of sharing their data to improve the services they receive. Some people don't have a strong need for data sharing solutions and they don't recognise an immediate benefit to their lives. They are concerned with more abstract issues of autonomy, and worry about losing control of their own decisions.

Some think that data will only be used against them. In some cases this fear is abstract but others have suffered at the hands of the system, have experienced prejudice in their healthcare, and feel the system isn't designed to help people like them. On the other end of the spectrum some people want their data to be shared all of the time, but most people sit somewhere in the middle.

It is important for some people to know how their data is being used to help people and that proper protections are in place to ensure an ethical and equitable system.