8. Theme 4 – how will we know systems are working?
When people and their families need to access social care support, particularly for the first time, it can be a life-changing experience. It often means having to understand a lot of information to inform decisions about what might work best for the person and their family. It often requires placing a significant amount of trust in services, professionals, and regulators. For some it can be a worrying time whilst for others it can be reassuring, offering up new opportunities.
As part of the Review, it was important to explore how we know systems are working. We spoke to people about issues related to informed decision making, digital technologies, data collection, and supporting good practice.
The people working within, and accessing, current systems of social care support, offered the Review many views, ideas, and insights into how these elements could be improved and strengthened. In general, people told the Review that they wanted to see high quality and accessible information, and the building of strong professional relationships.
The call for evidence asked a series of questions on what information people would find useful to assist in making informed decisions about social care support. Key questions asked at both the engagement events and through the call for evidence were:
- How can we ensure that people and their families who require care and support, have the information they need about how providers are performing to support their decisions about care and support?
- What information might that be?
The Review was also keen to explore:
- How can we make data collection and sharing better?
- How do we make sure inspection, scrutiny, and regulation supports good practice for people accessing care and support, people working in social care and providers delivering social care support?
Informed decision making
The Review received a clear message that people want a range of high quality and accessible information to be able to make informed decisions about their social care support. This included service provider improvement plans, feedback from people who use services, inspection reports and quality improvement frameworks. The Review heard that information about the role of the regulator and inspection outcomes was not always easily accessible. This suggests that, despite there being a duty for public organisations to provide information online, in an accessible format, in line with The Public Sector Bodies (Websites and Mobile Applications) Accessibility Regulations 2018, information might not be as clear or accessible to people as it should be and that the monitoring of information sharing should be better incorporated into scrutiny processes.
The Review heard repeatedly that qualities such as, kindness and compassion, should be part of what is considered in inspection, scrutiny, and regulation processes. Evidence shared with the Review highlighted that there needs to be a re-evaluation of what qualitative data (people’s experiences) is collected and used, and how.
The Review is aware that feedback mechanisms for continuous improvement will be co-designed and implemented across all NCS Services, including complaints and this should help contribute to the expanded collection of relevant data.
This Review goes wider than the NCS, and there is the potential for learning from the NCS work and that from linked services to be shared. An improved balance between the gathering and use of qualitative and quantitative data would help to ensure that people can be involved in identifying what they think is important to ask about in relation to services, and that people in receipt of social care support can express their own thoughts, and have their rights and feelings fully considered in the scrutiny process. Therefore, the Review recommends:
Recommendation 27 – It is recommended that qualitative measures should be co- designed by the regulatory agencies and people with lived and living experience to ensure that they include elements of services that are important to people.
It was also highlighted to the Review that information is available in a number of places, and it can be challenging for people to locate. On existing websites, content regarding inspection, scrutiny, and regulation should be clearly signposted and cross-referenced. There should be a single ‘source of truth’ available to people seeking information that is joined up to all other relevant sources to prevent conflicting information and to improve findability. Overall, it was felt that engaging with people receiving social care support and their families/unpaid carers about their information needs would help to ensure the right material is being provided in the best way.
The Equality Act 2010 and The Public Sector Bodies (Websites and Mobile Applications) Accessibility Regulations 2018 requires that all public services are as inclusive as can be reasonably expected, given the resources available to them, and to anticipate requirements of people with disabilities or impairments. This includes ensuring that information is accessible.
In Scotland, in addition, the Digital Scotland Service Standard (DSSS) is in place and is a set of 22 criteria that all digital services developed by Scottish Central Government sector organisations and Scottish Government corporate services must meet. This includes services for users or corporate services. The standard has 3 themes – user needs, technology, and business capability and capacity, and it aims to make sure that services in Scotland are continually improving and that users are always the focus. However, it is important to note that the DSSS standard and assurance process does not currently apply to Local Government or the NHS and Health Services.
The Review is aware that the CI takes account of the impact and quality of verbal and nonverbal communication between staff and care home residents as part of its inspections and makes recommendations for training and resources social care support staff can access to improve in this area.
Feedback received by the Review, however, suggested current systems are not always designed with the communication needs and preferences of people living with autism and dementia, sensory impairments, and other disabilities in mind. The communication needs of different people accessing social care support should be central to how a service is designed and delivered. In alignment with a person-centred and human rights-based ethos, all information should be jargon- free, cover all aspects of a service, and be available to suit a range of different formats.
The Review was also told that it is important to consider groups of people who may need additional or bespoke support to be able to choose their support options due to circumstances or capacity issues. People should also have easy access to information about independent advocacy and how to access this kind of support when needed. This supports findings under Theme 1 (page 25) about ‘a person-centred approach’ to social care support services.
The Review acknowledges some work is underway, for example, in relation to the NCS for all services to be multi-channel, in order to accommodate people’s digital capacities, inclusion and needs. This includes online, face to face, telephony, physical formats to include translations, accessible formats and the use of assistive technologies.
On balancing the evidence heard, the Review recommends:
Recommendation 28 – It is recommended that the sharing of data is examined, with the people at the centre of the process having access to their own data in formats that facilitate their understanding of it in order to support decision making and their involvement in this. This data should also be utilised for service planning and improvement, both strategic and operational.
Data collection and sharing systems
The social care sector collects and generates large volumes of data in its day-to- day activities. However, the Review heard that we need to think more deeply about the purpose and value of social care support and the data we collect.
There are well-recognised issues with the integration of data systems and it is challenging to share data seamlessly and safely across different platforms and between organisations.
Other issues include data standards, data sharing agreements and how people are using the systems in place. All of this can lead to valuable data remaining inaccessible for research, improvement and planning as well as duplication of data requests increasing the burden on providers. It can also make it challenging for people to have prompt access to their own personal data and care records. One of the impacts can be people having to tell their story several times, which can be distressing and exhausting.
The Review heard that whilst it is essential to tackle current issues related to the integration of different systems, this requires significant investment. One representative body responding to the call for evidence summed up these challenges:
Data held about registered social care services by the service and workforce regulators is not currently linked. The regulatory bodies could significantly improve the social care data available by sharing what they already hold from inspection visits, annual returns, and registrations in an accessible and up to date format.
People shared several suggestions with the Review regarding how data sharing and collecting could be improved including:
- Developing a single digital system or platform to help reduce duplication and administrative burdens.
- Improving the consistency of data collection by streamlining data collection and reporting requirements.
- Developing a national digital strategy that would allow for better collaboration, communication and data sharing and better performance management through good quality management information.
- Exploring lessons learned from the Covid-19 pandemic in relation to the rapid collection and sharing of data and the resources required to deliver this.
In relation to some of these suggestions, the Review is aware that work is already underway. For example, a National Digital Strategy with a new associated Digital Health and Social Care strategy has recently been developed. However, some people indicated that they were concerned about the cost and practicalities of developing a central platform and that the setting and implementation of technical and data standards may be a more cost-effective way of achieving improved outcomes. Therefore, the Review recommends:
Recommendation 29 – It is recommended that data is utilised for social care planning and individuals, and their advocates, have access to this to inform their choices.
Recommendation 30 – It is recommended that the type of data collected, and its purpose, is reviewed to ensure that the right data is collected for the right reasons, with a focus on data supporting performance management and service improvement.
Information management & governance
The Review is aware that the Information Governance Review: Executive Summary: Review of the Information Governance Landscape Across Health and Social Care in Scotland carried out in July 2021, found that the current Information Governance (IG) landscape in Scotland is fragmented and lacks the consistency to ensure efficient delivery of health and social care digital solutions, and effective access to data assets. These findings have been mirrored by feedback gathered by the Review.
Nonetheless, it has also been found that the COVID-19 pandemic accelerated digital transformation across health and social care and the development of more responsive, people-centred services, covering a spectrum of needs that are now being developed. The Review is also encouraged to see that a National IG Programme has been established to help address challenges related to data and digital across health and social care.
The Review heard that there is a lack of data skills and knowledge which has led to some people being unclear on the legislation and good practice governing the handling, use, and sharing of data. In particular, misunderstanding about what the General Data Protection Regulations (GDPR) entail and how they should be applied means that in some cases the sharing of data is unnecessarily restricted. This can create inefficiencies and delays in sharing intelligence and delivering support. It is important that people who are sharing their data, and those who are processing it, are clear about their rights and responsibilities so that everyone can get the maximum benefit from social care data.
A number of respondents felt that a duty to co-operate between service providers might help to improve the accessibility and sharing of data. However, whilst it was noted that this could be challenging if the culture of an organisation or other pressures make it difficult for people to co-operate without there being sufficient protections, investment, and capability in place, particularly across the voluntary and independent sectors. The focus should nevertheless be upon the people at the centre of the service – those who depend upon the social care support in question. The Review understands that a duty to co-operate is also a matter of consideration for the draft NCS Bill.
The Review found, that, in some instances, there are also misunderstandings about the legislation governing the collection, use, and security of personal data, potentially inhibiting legitimate data sharing. The way that GDPR is currently used in inspection, scrutiny, and regulation, can at times be a barrier to effective information sharing and this requires to be addressed; recognising this the Review recommends:
Recommendation 31 – It is recommended that a more tailored and contextualised approach is developed to how GDPR is used and interpreted within the regulatory landscape. It is also recommended that an Information Governance (IG) group is established to support the effective and proper use of information and engagement with IG experts.
The Review is mindful that there is a commitment within the draft National Care Service Bill to create a health and social care record (“the national care record”). This will seek to put the person receiving care and support at the centre, with the ability to access and personalise their record. If implemented, the national care record could potentially help to address some of the issues raised in relation to data sharing and access for the services it will include.
The draft Bill contains a provision (section 36) which gives Scottish Ministers the power by regulations to establish a scheme for sharing information so that services can be provided efficiently and effectively by, and on behalf of, NCS and NHS. While the Review welcomes the provisions within the draft Bill to strengthen the use and sharing of data, it is conscious that these provisions are still subject to Parliamentary approval.
The Review is also aware of the Care Home Data Review (CHDR) currently underway, which began in late 2022. A collaboration between Scottish Government, Public Health Scotland, and the Care Inspectorate working with stakeholders from across social care to review the current data being collected, how it is collected, its quality and what it is used for. This would seek to ensure a more strategic and co-ordinated approach to data gathering.
The Review is also aware of the SSSC’s Data and Intelligence Strategy for 2022-25 which sets out how the organisation will develop and use data and intelligence both internally and externally, to help improve ways of working.
The Review further acknowledges the work of Digital Healthcare Scotland and the Scottish Information Toolkit Information Sharing Toolkit - Digital Healthcare Scotland. The Toolkit enables service-providing organisations directly concerned with the safeguarding, welfare, and protection, of the wider public to share personal information between them in a lawful and intelligent way.
This framework applies to all public sector organisations, voluntary sector organisations, and those private organisations contracted to deliver relevant services to the public sector and who provide services involving the health, education, safety, crime prevention, and social wellbeing of people in Scotland.
In particular, it concerns those organisations that hold health and care information about individuals and who may consider it appropriate or necessary to share that information with others.
Balancing the evidence shared, recognising work currently underway, the Review recommends:
Recommendation 32 – It is recommended that there is a ‘duty to co-operate’ placed upon service providers to share data appropriately and equally upon regulatory bodies to work together to avoid duplication in their requests for information.
Digital exclusion & technology
Although a significant proportion of the population have access to the internet and digital technologies, the Review was asked to be mindful of digital exclusion. Some people may lack confidence in using a computer and online services or they do not have access to the internet, or to a mobile device. If information is only accessible via a digital platform, this can leave people at a disadvantage when accessing services and information about their rights in relation to care and support.
In line with the human rights and person-centred basis of this Review, people should be afforded choice in how they access information about services. To ensure that information is available to all who require it, appropriate alternatives such as paper formats or telephone and in person contacts should be made available and the Review is aware that accessibility issues will be addressed via the NCS co-design process.
An example, is the ‘Near Me’ video consulting service, funded by the national Technology Enabled Care (TEC) programme, which enabled the choice of video appointments during the pandemic across health, social care, housing and the wider public and third sector. The roll out of ‘Near Me’ involved participation and collaboration with regulators, health and social care providers with 95% (a total of 1,100 services) of care homes and residential care providers for children and young people participating. By June 2020, 17,000 ‘Near Me’ consultations were taking place each week, and this high level of use has been maintained ever since. Hospital and community-care services account for 77% of ‘Near Me’ appointments, and general practitioner services for 23%.
Despite the benefits that technology can offer, the Review was told that it cannot replace people and relationships. Technologies are undoubtedly helpful tools, but they must be designed and used with people at the centre of all considerations.
Highlighting best practice and ensuring consistent standards
There are a variety of indicators and standards across health and social care, and this can be confusing. Key references for the social care sector are the Health and Social Care Standards: My Support, My Life. The Health and Social Care Standards were driven by the Public Sector Reform Act (Scotland) 2010, developed in 2017 and launched in 2018. Two new standards were introduced in 2021 with an emphasis on helping family and friends remain connected with their loved ones in care homes and be involved in their care and support even in times of crisis.
The Standards are used by the Care Inspectorate, Healthcare Improvement Scotland and other scrutiny bodies, when conducting inspections of health and care services, as a minimum benchmark when carrying out their inspections and quality assurance functions, and when making decisions about care and health services which are, or are applying to be, registered.
A review of the Standards carried out by Scottish Government in 2019 suggested that their introduction was helping to influence improvement of the experience of people accessing social care support services. More recent feedback has also indicated support for the Standards; however, there have been some concerns raised about the consistency of implementation and with the use of the word ‘minimum’.
This could suggest a low bar of quality and instead the emphasis should be placed on striving for the best in support provision. The Standards set out quite clearly what people should expect when accessing social care support services.
Most organisations who mentioned Health and Social Care Standards in their responses to the NCS consultation provided broadly supportive feedback in principle, but not necessarily about how they are delivered. There was support for a refresh of the current existing standards from a number of organisations, including National Education for Scotland:
NES considers that at the heart of any future model of regulation are refreshed integrated Health and Care Standards that build on human rights, outcomes focused seamless care, that is ethically commissioned, co-designed and delivered in the right place at the right time by a skilled, knowledgeable, and where appropriate qualified workforce. The refresh of the Health and Care Standards could potentially include a stronger focus on population health; ethical commissioning; and valuing the health and care workforce. These should form the basis on which outcomes-based scrutiny is focused.
Given proposals for a National Care Service, it is more vital than ever that standards are designed, implemented, and measured in a way that makes health, social care and social care support services better for everyone. They need to ensure every person is treated with respect and dignity and that the human rights we’re all entitled to are upheld. Therefore, the Review recommends:
Recommendation 33 – It is recommended that a review of the Health and Social Care Standards takes place to ensure they are based on human rights, ethical commissioning and are outcomes focused. The Standards should be the basis on which social care support services are inspected, scrutinised and regulated.
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