The Scottish Government has shared analysis on the results of a public consultation they held last summer to inform the development of Scotland’s first data strategy for health and social care.
The analysis is split into three main sections:
- empowering people, with focus on how individuals can have greater access to and control over their health and social care data
- empowering those delivering services, focusing on the development of data skills and the technology, infrastructure and frameworks required to ensure access to data
- empowering industry, innovators and researchers, exploring opportunities around access to data for research and innovation, the infrastructure needed for such access, and artificial intelligence
Here we take a closer look at some of the key findings from the consultation and subsequent analysis.
In this section, the consultation began by exploring individuals’ perceptions of what health and social care data is. The most common perception was that it is an individual’s medical history, including clinical notes from GP and hospital visits, diagnosis history, test results, medications, prescriptions and vaccination history.
The analysis noted that some individuals and organisations highlighted the large variety of information that could be considered health and social care data, and the fact that public understanding can vary. “Consequently, there were calls from respondents for a clear definition to be developed,” the analysis stated, “particularly for social care”.
When asked about their priorities for accessing data, “by far the most prevalent theme” was around “access to test results including an interpretation of what the results mean.”
Some respondents noted that they would like to see “relevant information that could affect their treatment or care, or that would impact their ability to make decisions about their care or how they self-manage conditions”.
The potential to access and use data to keep people informed was also raised, with some respondents suggesting that people should have access to details about previous and upcoming appointments, waiting time information and schedules for treatment. Other types of data raised as potential priorities included personal details (with respondents particular keen to ensure that they have a way to check that this information is correct), a full vaccination record, a history of service use and sensitive information such as sexuality, sexual health and mental health.
On the flip side, some respondents indicated that there are some types of data that they would not want to access, such as test results which could be difficult to interpret without professional advice.
The consultation asked for people’s thoughts on delegating access over data to a trusted individual if necessary. A recurring theme in the responses was around consent, with respondents recognising that the individual delegating access would need to give consent if they had capacity to do so. “Recognising issues around capacity, a few suggested delegation would ideally be arranged in advance while a patient was fit and able; if not, suggestions for delegation included to a GP and a ‘break glass’ clause where access was granted for immediate care needs.”
Moving onto what health and social data is being used for, the analysis shared how many respondents stated that they would like to know this and some provided detailed comments such as the need for privacy statements which “clearly outline the intended use of data”, with some respondents stating that they would only be willing to share the data if it was for positive reasons. Some suggested the publication of reports or summaries to demonstrate the positive impact of the data.
With regards to who data is shared with, a number of respondents including individuals and organisations from multiple sectors “called for a clear record or log of who had been given access to data, when, and for what purpose.”
A need for clear, consistent and accessible information was raised in terms of data storage and security; consent and procedures for data sharing and use; and what data is being collected, stored and shared. “Suggestions ranged from privacy statements written in plain English to consent dashboards which people can access to have a clear overview of who is using their data and why, and potentially switch their consent on or off,” the analysis shared.
Another theme raised was around data quality and data literacy. “Some respondents highlighted the importance of data quality, accuracy and completeness,” the analysis stated. “They indicated that their trust would improve if they felt health and social care professionals understood the importance of, and were adequately trained in, the collection, recording and use of data, as well as data privacy and the handling of data.”
When asked if there are any health and social care situations where they might be uncomfortable with their data being shared, answers tended to revolve around the type of data this involved. Information about sexual health and mental health, for example, were the most commonly raised topics. Other examples included non-anonymised data, historical data not relevant to current care needs, abortion history, disability information and problematic substance abuse. The analysis notes: “A small number elaborated by stating that this information could lead to them being unfairly judged.”
The consultation examined respondents’ views around the use of data in research and healthcare innovation, with analysis indicating that respondents were broadly willing to share for these purposes.
Respondents also highlighted the role of data sharing in service improvement. “Some respondents noted the value of data in allowing health and social care services to audit and evaluate services, manage performance and improve the quality of service delivery,” the analysis states. “A few specifically highlighted the importance of data and data modelling in planning the distribution of funding and resources and forecasting future demand for services.”
Another key area raised was the use of wearable data. Respondents noted that “as well as being useful for self-management, sharing this information could support ongoing care and reduce unnecessary appointments.”
Empowering those delivering health care
Here, the consultation focused on key areas related to the empowerment of the workforce, such as data skills and training; resourcing; communication with the public; standardisation and interoperability; digital exclusion and digital literacy; investment in infrastructure; and innovation.
When presented with a list of data skills and asked to select which were in most need of additional training in the sector, respondents chose: understanding of what data exists and where to find it; knowledge of how to access data; and understanding of governance. “The need for further resources to address skills and training opportunities was mentioned by several respondents,” the consultation stated. “Paid training time was mentioned by some, while others highlighted the need to invest in updated technology and more trained staff.”
The nature of training was also discussed, with respondents pointing out the need for continued professional development to help the workforce keep up-to-date with technology. Some said that training and assessment should be part of job descriptions and therefore mandatory. On accessibility, the consultation says: “Some respondents highlighted the importance of creating training packages that encourage participation through ease of access. Others emphasised the need for training to be online, mobile-friendly, and free.”
On creating practical and simple pathways, the respondents suggested platforms that provided data visualisation tools in order to make data easy to find using intuitive interfaces. They noted the importance of “simple, jargon-free language”.
The importance of getting input from service users about their wants and needs regarding data access was raised, with a few respondents recommending a co-design approach.
Looking at standardisation and interoperability, the consultation highlighted confusion about terminology and inconsistent data capture as “barriers to accessible and comprehensive health and social care data”. They indicated support for interoperable systems and national standards seen to simplify the system, “specifically for instances of geographical relocation.”
Respondents shared concerns around digital exclusion and recommended providing access to any necessary equipment and training, along with support for those who may need it in order to use technology. In addition, “a few noted access to data will only be effective if service users also have a level of health literacy. They argued individuals should be helped to understand their health and social care data as well as access it.”
With regards to infrastructure, the analysis shared how investment in infrastructure was highlighted as “the first step in improving access for service users”, including investment in hardware to allow for standard and easy data collection as well as tools to allow people without necessary devices to access their data.”
When asked what three things are needed to improve quality and accessibility of data used in health and social care services, respondents said interoperability, standardisation and training/support. They highlighted the benefits of systems “such as a ‘tell-it-once’ or a ‘once for Scotland’ approach to data collection which allows data shared by users to be included in a Scottish-wide system”. On standardisation, respondents requested standardising types of data gathered and forms used for data collection and suggested using open-source software to connect different systems to one user platform. Finally, on training and support, they noted the importance of training on data literacy and security including GDPR, with some respondents recommending the hiring and training of specific teams to create new platforms, frameworks and programmes.
The analysis stated: “The necessity of an easy-to-use platform was raised by many respondents, often giving the example of a ‘digital front door’ where health and social care data from different agencies and bodies is collated into one accessible place. There were suggestions for an interface where service users could ask questions, clean and clarify their personal data, and access information about their conditions or healthcare plans.” Several respondents also noted the importance of having a user-friendly platform for service providers and said “gathering quality data would only be possible if practitioners found it easy to use the designated platforms.”
The consultation asked what role the organisation should play in improving accessibility and quality of health and social care data. Respondents indicated that organisations have a responsibility around implementing standards, management of data, strategy implementation, developing technology, systems or platform architecture, training staff, and reviewing their current systems to identify data gaps.
Next the analysis moved on to examine views around data generated outside the sector, which could be used to improve health and social care outcomes in Scotland. It shares “support for using a range of externally sourced data sets” with respondents noting “the value this data could provide in building a fuller profile of service users and improving patient outcomes”. Many respondents noted the value of sharing housing data and information and mentioned that it is “a key way to track poverty and inequality”. Other suggested data types in this area included information from apps or wearable technology; other biopsychosocial indicators of health and health behaviours, such as education attainment or HMRC information; interaction with other services such as social services or private health services; demographic data; and population indicators such as geographical information.
The consultation asked: “We have heard that a more consistent approach to data standards will help improve insight and outcomes for individuals. To what extent do you agree with the proposal that Scottish Government should mandate standards for gathering, storing, and accessing data at a national level?”
Respondents indicated “widespread support” with 88 percent selecting that they agreed with mandated standards. The analysis adds that many respondents shared “general comments in support of consistent data collection and storage, which would provide a foundation for interoperability and ensure high quality data capture. Respondents supported standards for coding, governance and data protection, and for access and transparency about data usage.”
Examining the relationship between data sharing and patient safety, with a focus on answers from clinicians, the analysis stated: “Several respondents believed data sharing would enable health and care practitioners to meet the needs of service users more fully. These needs included not repeating histories, timely referrals to appropriate services, and earlier intervention for those nearing crisis points.” In addition, it was suggested that shared data would provide “enhanced analysis of patient experience and treatment successes, such as patient reported outcome measurements, and could allow researchers to spot trends and target prevention programmes at a population level.”
Next, the consultation asked for views on the priority pieces of management information needed to provide better services. The most common theme was a recommendation to collect operational data with suggestions including demand, capacity and queue information, dynamic risk assessments, workforce size data and future service plans. A few expressed “an interest in collating this across health boards for comparison.” In addition, financial data including cost effectiveness to support commissioning decisions was also raised.
On removing barriers to data sharing, respondents suggested that the system should be “a national, interoperable, central hub with a single access point or a digital front door”. Suggestions included integrating old legacy systems and using interfaces between applications, and respondents also noted the importance of using a single identifier for service users to enable information to be linked across organisations.
Collaboration was brought up in the analysis as useful in helping to create an end-to-end system. “These included collaborations with both larger-scale consulting experts as well as organisations with local business intelligence who could provide strategic direction,” the analysis stated. “Others noted the importance of seeking input from key stakeholders in health and social care.”
Finally, on the topic of population health data, the consultation asked what key data sets and data points should be reused across care to reduce duplication of effort. Many respondents suggested data from medical or clinical records, including key diagnoses, allergies, vaccinations, medical lists, previous admissions, outpatient care records and imaging records. Several raised personal demographic data, and others suggested treatment choice information. Less frequently mentioned data sets included social care notes and pathways, functional abilities, protected characteristic data, patient reported outcome measures and self-generated personal data such as data from wearable technology.
Empowering innovators, industry and researchers
Here, the consultation explored opportunities to use data for innovation, industry and research in order to support the delivery of health and social care services.
To begin, the consultation asked: “how do you think health and social care data should be used by industry and innovators to improve health and social care outcomes?” Responses suggested using data to aid research into new and innovative healthcare solutions; to evaluate the impact of health and social care interventions; and to monitor population health trends and inform future policy and planning.
In order to optimise the application of health and social care data, some respondents said that “effective collaboration” is required between the government, the NHS, social care and industry. The analysis noted: “A few cited examples of existing models which have successfully allowed health and social care data to be used to support innovation and industry collaboration, including OpenSAFELY, Early Access to Medicines Schemes (EAMS), ChemoCare and DataLoch.”
In order for industry and innovators to maintain trust and confidence from the public, respondents said that they should be “open and transparent about how their data will be processed”. They also indicated the importance of anonymity, compliance with data protection legislation and ethical approval protocols and choice and consent, along with “innovators and industry making greater efforts to communicate the benefits of using the public’s health and social care data”.
With regards to objections around using data for commercial gain, the analysis showed frequent objections around using data for reasons such as market research and targeted advertising, developing and selling products and services, and predictive technologies such as insurance. Respondents raised objections to situations such as industry being given access to personally identifiable data; around granting access to any research that is not in the public interest; and research that has not been through a robust ethical approved process.
Industry, innovator and researchers should make it clear how data will be used, respondents said; they should publish information about data security and ethics, and publish results or findings too.
Next the consultation moved onto issues around infrastructure. It asked: ‘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?” Respondents endorsed the use of safe havens or trusted research environments to store and share data and suggested ways to resource, manage and structure them. These suggestions included greater investments, for safe havens to collaborate with each other, to access the latest technology and to learn from the private sector or be led by Research Data Scotland.
Moving onto innovative technologies, the consultation sought views on how technologies such as AI can “help to improve decision making, empower health workers and deliver higher quality health and social care services to citizens”.
There was a mixed response in terms of overall views on AI, though the analysis states that “on balance the majority of respondents were in favour.”
Respondents shared views indicating that AI’s potential is “vast” and that “AI is not only useful but denying its use for the population of Scotland would be unfair”.
Several respondents said that AI would “only be appropriate in certain circumstances” and “typically argued that clear parameters should be set out for its use which consider what is of most value to services and service users, and an assessment of any potential risks or unintended consequences”.
Some said that AI’s effectiveness still needs to be proven, and some “expressed clear opposition… arguing that there is unjustified hype around what it can achieve.”
The main elements of discussion around AI were its benefits, particularly in diagnostics, with respondents highlighting how AI can “result in earlier diagnosis and better treatment”; governance, regulation and ethical approval; the need for human oversight; and testing and evaluation.
To read the analysis in full, please click here.