Health and social care: data strategy - equality impact assessment

Equality Impact Assessment – Results

Directorate: Division: team

Directorate for Digital Health and Care on behalf of the Scottish Government and COSLA

Title of Policy

Greater access, better insight, improved outcomes: a strategy for data-driven care in the digital age (Data Strategy for Health and Social Care)

Summary of aims and desired outcomes of Policy

The vision of the Data Strategy for Health and Social Care is to improve the care and wellbeing of people in Scotland by making best use of data in the design and delivery of services.

To achieve this vision, the Scottish Government and COSLA will work to three key ambitions:

• To empower the people of Scotland by giving individuals clear and easy access to, and the ability to manage and contribute to, their own health and social care data where it is safe and appropriate to do so.
• To empower those delivering health and social care services to have the confidence and ability to gather, safely use, and share data to sustainably improve services and ensure outcomes are being met.
• To ensure fit for purpose data is readily accessible through secure and safe means for planning, research and innovation. Data will be used for the benefit of individual wellbeing and the public collectively, including the development of new and innovative ways of working, improving care, developing new treatments and technologies.

To meet these ambitions, we have identified eight priority areas for action. Each of these areas is outlined in the Strategy. Each area sets out the headline commitments we will work to. Annex A of the Data Strategy details our deliverables which are specific programmes and pieces of work that will be undertaken and acts as our initial Delivery Plan for 2023/24.

Background

Developing the first Data Strategy for Health and Social Care in Scotland is a shared Scottish Government and COSLA commitment, as set out in Care in the Digital Age and Scotland's Programme for Government. This Strategy is the result of extensive stakeholder engagement and public consultation throughout 2022. It seeks to make the best use of Scotland's health and social care data to improve people's health and wellbeing through improved, more sustainable, health and social care services.

This Strategy is the first step in meeting a greater ambition to improve access to, and sharing of, health and social care data for individuals (adults and children); and across intricately linked areas, such as housing, social security, and education. The Strategy sets a framework for the ethical, transparent use of data by health and social care providers. It also identifies and addresses the first set of challenges we need to resolve before we can begin to address the more complex and detailed challenges that we know exist.

This Strategy recognises that a single document will not suffice. Instead, the Strategy will be a multi-year effort requiring regular updates and refinement with multiple iterations published over a five-year period. The Strategy document sets out the ambitions and principles with fuller details available in associated appendices. Actions resulting from this Strategy should not be viewed in the short-term: we acknowledge that to truly achieve our vision, will require time and incremental change as funding and resources permit. In taking this approach, we will learn from our shared experience and our ongoing stakeholder engagement and participative work with the public to ensure that deliverables are appropriate, proportionate, and achievable.

The Scope of the EQIA

This EQIA is evidenced by a range of literature, outputs of engagement with stakeholders^[1], engagement with the public^[2] and responses made to the formal consultation on the Strategy^[3].

Development of the Data Strategy and this EQIA began with a literature review, informing the current thinking on the use of health and social care data. The literature review also acted as a process for identifying area's where published evidence in the context of a Data Strategy for Scotland was missing or limited.

A bespoke public engagement exercise was commissioned based on the analysis of gaps as identified in the literature review, or where it was felt more information was required in the Scottish context. This exercise was in addition to collecting the views of members of the public and organisations in meetings arranged with the help of partners in the third and independent sectors.

A public consultation to inform the development of the Strategy ran from 16 May to 12 August 2022. This was an opportunity to understand a wide variety of stakeholders' views on how data should be gathered, stored and used. The consultation received 162 responses; 62 from individuals and 100 from organisations. The analysis of the consultation^[4] was further used to inform development of the Strategy and the associated impact assessments, including this EQIA.

In developing this EQIA, we have also worked with subject matter experts in data and issues relating to the equality of the policy, such as digital inclusion. This EQIA focuses on the impact of the Data Strategy rather than individual uses of data or the impact of individual systems. As the Data Strategy is broad in scope, EQIA's will be undertaken for each specific programme of work that begins as a result of the Strategy.

Key Findings

The evidence we have gathered and reviewed suggests that developing a Data Strategy for Health and Social Care will have positive impacts on individuals, their carers and families by making greater use of data to improve delivery of health and social care services. For example, the Data Strategy could provide individuals with greater empowerment by giving greater access to their own health and social care data. This in turn would allow for a more person-centred approach and more varied or preferred routeways to care, meaning that support is better integrated for those with complex care needs. This can also support an early intervention and prevention approach reducing crisis.

The Strategy will also have positive impacts on those providing health and social care services by providing greater empowerment and confidence to use, access and share data effectively which will allow staff to provide the best care possible to people in their care, resulting in improved outcomes for people in Scotland.

Additionally, the Strategy could have a positive impact by facilitating access to health and social care data for research and innovation purposes. This can improve our understanding of inequalities, health and wellbeing and the factors that influence them allowing targeted action to be taken.

The EQIA has informed our understanding of the importance of improving the collection of protected characteristics data and highlighted areas where the collection of data requires further consideration such as data on sex and gender. As a result, we have set out specific deliverables within the Strategy to improve the collection and use of protected characteristics data to mitigate against the current inequalities that some minority groups face^[5] which could result in positive impacts by ensuring that equitable care is provided for everyone in Scotland.

The EQIA, stakeholder and public engagement work have identified considerations that the Strategy must take account of to ensure that any inequalities are addressed and mitigated. The key themes include:

Information Sharing and Security

The sharing of information in a safe and secure manner is key to the goals of our Strategy. By ensuring the right people have access to the right data at the right time, we can positively improve health and care services for everyone in Scotland, but in particular for those with complex care needs, such as some disabled or older people.

Trust in the security of information storage and sharing is also crucial. Sensitive data about all of us, including our protected characteristics must be kept safe from inappropriate use or theft, or we risk losing public trust in our health and social care organisations. In losing trust, we will no longer have access to the depth of data that will allow us to properly explore how we can improve health and care services for everyone in Scotland. Our Strategy sets out the mitigating steps we are taking to ensure the safety and security of health and social care data across Scotland.

We know, as an example, that transgender individuals may be known by different names, pronouns, and genders by different people, institutions, and databases at various points in their lives. If these changes have not carried across all data sets, people may have different names and genders on different healthcare databases, which can cause data flow and interoperability issues, ultimately to the potential detriment of that individuals care. We know through our public engagement that issues like the above have meant that some transgender individuals have a lower than typical level of trust in our health and social care services^[6].

The ambition of the Data Strategy is to make sure the sharing of data makes it easier for those who are providing care to access the information needed to provide the best care possible. It also acknowledges the frustration that people with complex care needs experience when having to repeat information when accessing health and social care services^[7]. We have heard that people often have to retell their story due to a lack of information sharing across the sector which can be an emotional burden particularly for people living with sensory loss, long term or rare conditions^[8]. To address this, the Strategy aims to ensure that the right information is shared with those who need it (be it a professional, a carer or an individual) at the right time. This means sharing the information that is needed to provide care, not necessarily sharing all the information held about an individual. If protected characteristics information is shared but not relevant, then there stands to be a significant risk that trust and confidence in health and social care services will be diminished, particularly amongst minority groups who have been historically discriminated against based on those characteristics. The Strategy has set out a commitment to create clear guidance on data handling and sharing to enable staff to access and share data whilst ensuring the appropriate safeguards are in place to protect the data that is held.

Trust, transparency and accessibility

Ethical approaches to data are key to the successful delivery of the Data Strategy. The Strategy sets out a need to be accountable and that means being transparent about the data we hold and how we use it. Through opening up greater access to health and social care data, we will create greater transparency around the data health and social care services hold about individuals. We believe this Strategy will positively impact the trust some minority groups have in health and social care services, if they feel assured that the information held about them is an accurate representation of their circumstances. It will also allow individuals to more easily identify information held about them that they believe could lead to inequity in their care and allow them to seek rectification as a result. This could also have a positive impact on some individuals with protected characteristics being subject to stigma or unconscious bias, although we note that it will not be a 'silver bullet' in combatting these issues.

For information to be truly transparent it needs to be accessible and understandable to the individual reading it – it cannot be considered transparent simply by virtue of providing it. There will be potentially negative consequences to opening up access to data if the data provided is not understandably or could be misinterpreted by the reader, which could undermine confidence and trust in services. Furthermore, there will be significant challenges in opening up access to health and social care records and striking the right balance to ensure they are accessible which will need to be examined in further detail through specific programmes of work, and future iterations of the Data Strategy. Accessibility issues could be more acute for some groups of individuals, such as those who are deaf, or do not have English as their first language. The Strategy seeks to mitigate this by committing to describing data and information using plain language where is reasonable and appropriate to do so. Translation services should continue to be used where proportionate. These considerations will be made by the specific programmes of work that will facilitate the vision and ambition of the strategy, and each of those programmes will detail their approach in bespoke EQIAs.

Access to Data

Building on the benefits and risks of proving greater access to and control over data in respect of trust and transparency, there are a number of wider considerations and points of learning from current work. Providing greater access to data by digital channels can positively benefit individuals by allowing them to access information in a way that is convenient to them and allow for more rapid access to information like test results. This is evidenced in the use of digital access to maternity records for pregnant women in some areas of Scotland, replacing the requirement to carry paper records to antenatal appointments^[9]. Greater access to data and ability to contribute to an individual's health and care record can also allow for greater self-management of medical conditions and forms of care, allowing people to continue to improve their wellbeing on their own terms. This is evidenced through the use of My Diabetes My Way in Scotland, which seeks to allow individuals to self-manage their own condition and contribute to their record with their clinician to ensure the best possible care^[10]. This Strategy seeks to scale up and build on the positive impact of examples like these for the benefit of everyone in Scotland. Digital routes to accessing data can also create negative impacts^[11], which are explored under Digital Inclusion below.

Greater access does create potential negative impacts for people in Scotland which may be more acute for those with some protected characteristics. Potential negative impacts include: individuals becoming harmed emotionally by what they read in their record, information being read out of context, records being 'dumbed down' reducing their value, individuals feeling judged or offended by information they read (undermining their relationship with their professional)^[12]. These potential impacts, alongside the possibility of information being read out of context will be carefully examined through the programmes of work that enable greater access to data and their associated EQIAs. Learning will also be drawn from partners in NHS England's experience of opening up greater access to medical records.

There also exists a potential risk that digital access to health and care data could enable or increase control and coercion of individuals that are vulnerable. These risks have been examined by the Royal College of General Practitioners, who offer training, advice and mitigations in the context of England's NHS App^[13]. Learning will be drawn from these resources and similar as we seek to open up greater access and a safe way.

Digital Inclusion

We know that Digital Inclusion is an important aspect of maintaining an individual's choice in how they wish to interact with their health and social care data. We heard through our consultation how accessibility of digital technologies can vary dependent on individuals protected characteristics, particularly when deprivation, mobility or a disability^[14][15] is a barrier to accessing them. We also know that connectivity across Scotland is not equal^[16], and have explored digital inclusion for rural and island communities through our Island Communities Impact Assessment. To mitigate possible negative impacts, we are committed to retaining viable non-digital routes to accessing health and social care data for those who wish to engage in this way. We will also work with the Connecting Scotland programme and other work across the sector to enable connectivity for those who wish to engage digitally but are excluded for by any range of factors including protected characteristics.

Population Insight

By providing people in Scotland with access to near real-time information in accessible formats, we can enable greater interaction and insight, to help people make informed decisions about accessing health and care services. By collecting data for insight, using common information standards, at a national level, our health and care services will be better positioned to understand structural and systemic inequalities (such as inequalities faced by individuals based on their ethnicity^[17] or gender^[18]).

Furthermore, better population level insight will allow for better targeting of information and services to improve the outcomes for groups of individuals that are less likely to access health and care services for a variety of reasons. We had seen during the COVID-19 pandemic that understanding trends in how diseases can have a greater impact on groups of individuals with certain protected characteristics (such as ethnicity^[19]) is vital to supporting those at the greatest risk.

By improving our population level insight through the robust collection of interoperable data, we believe this strategy can have a positive impact across all protected characteristics groups.

Service Improvement and Innovation

As noted above, through achieving the vision and ambitions of this Strategy we can generate the insight needed to improve services and introduce innovations, having a positive impact for everyone in Scotland. In addition, to provide insight for the people of Scotland, consistent collection and use of data (management information) is essential to health and social care managers and planners for service improvement, which in turn will improve the experience of those accessing services. For example, we can have a positive impact in reducing waiting times, which we know are currently an issue for many groups of people, but often felt acutely by older people as an example^[20][21].

This Strategy also recognises that our health and social care data is a national asset which has great potential both economically and for improving and innovating, particularly in relation to new technologies, treatments and medicines^[22]. By setting direction in providing more streamlined access to data for research and innovation, we believe the Strategy will have a positive impact of the wellbeing of all people living in Scotland. We are aware that people are particularly concerned about commercial exploitation of their data being used and there is often distrust around private access to public data for research and innovation purposes^[23]. To mitigate this and build public trust the Strategy has set out the robust safeguards and controls that are in place to ensure privacy and confidentiality of individuals data when being used for research and innovation purposes.

Data Quality

The collection of fit for purpose health and social care data regarding race is essential for identifying inequalities and patterns of disadvantage that may go unseen^[24][25]. We know that poor quality data and gaps in our data lead to systemic inequalities, as was highlighted when consider the effect of COVID-19 on minority ethnic individuals^[26]. This risk is not exclusive to ethnicity, for example we also know that individual's religion and beliefs can have a bearing on how they choose to interact with health and care services^[27][28]. This Strategy commits to improving the quality and consistency of protected characteristics data, supporting other streams of work such as the Equality Data Improvement Programme^[29] or the Research Data Scotland work on developing an Equality Research Dataset. Through these programmes of work we can improve the quality of data available for both service improvement and to address the under-representation of Scotland's diverse populations in clinical research.

We believe that the greatest risk of negative impacts on the people of Scotland comes from inaction in improving the quality and completeness of protected characteristics data.

Clinical Safety

Clinical safety is an important consideration in the collection and use of data to improve health and wellbeing in Scotland. The collection of data on Sex, Gender Identity and Trans Status in particular, has complex implications for clinical safety^[30]. The Scottish Government's Chief Statistician sets out guidance for the collection and publication of data relating to these characteristics^[31]. We consider that through iterations of this strategy and future policy development, greater research and analysis is required to understand the best means of collecting and using this data to uphold individuals' rights whilst preserving their safety. This will include consideration of how Scotland's CHI number (a key data point across health and social care) represents Sex and Gender Identity^[32] and how digital systems capture and communicate an individual's Sex and Gender Identity.

Recommendations and Conclusion

There is currently no evidence to suggest that the Data Strategy would have a direct negative impact on any of the protected characteristics. It is expected that the policy will have an overall positive impact by making greater use of data to improve delivery of health and social care services; and by empowering people through giving them greater access and control over their data, enabling to self-manage their conditions and better participate in their care.

The ambitions of the Strategy meet the needs of the Public Sector Equality Duty by aiming to advance equality and eliminate unlawful discrimination and foster good community relations.

The potential for the Strategy to cause negative impacts in regard to clinical safety and inaction to improve data quality will be kept under review as the policy progresses so that mitigations can be put in place where necessary.