A public consultation to inform the development of Scotland's first Data Strategy for health and social care 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, and will shape the final Data Strategy, due for publication in early 2023. The consultation contained six closed and 26 open questions and received 162 responses; 62 from individuals and 100 from organisations.
Part One: Empowering people
Key finding: Transparency and consent were recurring themes. Respondents stressed the importance of being aware of what data is collected from them, how it is stored, what their data is used for, and by whom. This information should be available in clear and accessible formats to allow for informed consent and the sharing of relevant data.
When asked what they consider health and social care data to be, and what types of data they were most keen to have access to and control over, respondents typically perceived health and social care data as an individual's medical history, comprising: clinical notes from GP and hospital visits; diagnosis history including treatments offered and their outcomes; test results; and medication, prescriptions and vaccination history. Personal information was mentioned by some respondents, covering name, date of birth, contact details, next of kin or emergency contacts. Some stated they would like to access relevant information that could affect their treatment or care, or that would impact their ability to make decisions about their care or self-management of conditions. Types of data respondents felt uncomfortable sharing included: sexual health, mental health, non-anonymised data or information which could identify an individual; and historical information not relevant to current care needs.
Respondents were asked what would provide clarity on how their data is being used in a consistent and ethical manner, and how professionals using the data could improve trust. The importance of transparency over what data is being collected, how it is being stored, who is accessing it and what it is being used for was most frequently highlighted. Providing this information in clear, consistent and accessible ways, allowing consent to be sought and given, was a recurring theme. Other ways to improve trust included improving public understanding, information governance and data quality, and staff training in data literacy. Reflecting on situations where individuals are unable to interact with their own health and social care data, the most common theme was that existing legal safeguards such as Power of Attorney or Guardianship could be used as examples to create new safeguards.
There was widespread support when asked if data should be collected to help understand how health and social care services support those with protected characteristics. When asked what other purposes their health and social care data could be used for in the sector beyond administering care, respondents were broadly supportive of it being used for research and healthcare innovation, performance management and service improvement.
Responding specifically about the usefulness of data from wearable devices, there was recognition that this could be useful for monitoring conditions and highlighting a need for early intervention, though some health bodies questioned the reliability and usefulness of data collected by non-clinical devices.
Part Two: Empowering those delivering health care
There is a need for user-friendly platforms, interoperable systems, linked data and data standards to improve the accuracy, completeness, consistency and accessibility of data. These would allow for a joined-up approach that is scalable and flexible across services and lead to better quality services.
Practitioners can be empowered through investment in training to give them a better understanding of data processing, the value of data in health and social care, and of governance and ethics.
The consultation paper presented respondents with a list of six data skills and asked which were most in need of additional skills and training in the sector. Understanding what data exists and where to find it was identified as the key skills and training gap, followed by knowledge of how to access data and an understanding of governance. The need for further resources to address skills and training opportunities was mentioned by several respondents. Others noted the importance of training staff both in data literacy and security including GDPR, and also the need for improved understanding of the importance of collecting accurate and timely data.
To ensure the public can access, understand and use health and social care data, respondents highlighted the need for accessible and intuitive interfaces. Some noted the value of understanding service users' needs before designing systems and platforms. Concerns about digital exclusion were mentioned by some who stressed that those without digital access to their data should not be further disadvantaged as a result. Other themes suggested in response to being asked about how to improve the quality and accessibility of data included interoperability, shared systems and linked data, and training, targeted recruiting and technical support. Many respondents noted that infrastructure improvements, both hardware and software, would be needed to improve the quality of data collection and accessibility.
Respondents were widely supportive when asked about mandating standards for gathering, storing and accessing data at a national level. A common reason for support included improved consistency and reduced duplication though using standardised terminology and data collection methods. This 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. Existing standards, codes and guidance were suggested by several respondents.
Questions about considerations for an end-to-end system for providing business intelligence led many to highlight that removing barriers to data sharing was a key requirement. Respondents suggested a national, interoperable, central hub with a single access point or a digital front door. A few respondents suggested it needs to integrate old legacy systems as well as use interfaces between applications. The importance of using a single identifier for service users, such as the CHI number, to enable information to be linked across organisations was raised by a small number. Several mentioned trained staff were needed to develop a new system, i.e., upskilling current workers or hiring those with expertise in delivering end-to-end systems, health and social care data, hardware and software infrastructures and governance and data ethics.
There was support when asked about using a range of externally sourced data sets, with the most suggested being housing data, information from wearable technology, socio-economic and demographic data, and interactions with other services. Respondents noted the value this could provide in building a fuller profile of service users and improving patient outcomes. Reflecting on what positive outcomes could result from the better sharing of data, respondents described improved service user safety and better quality services where practitioners could meet the needs of service users more fully through more holistic and timely sharing of data. When asked about the priority pieces of management information required, there was recognition that this would also require improved collection and use of operational data such as Demand, Capacity, Activity and Queue (DCAQ) information, dynamic risk assessments, workforce size data and future service plans, as well as information about service user outcomes and data about protected characteristics.
Part Three: Empowering innovators, industry and researchers
There was broad support for using anonymised data to help drive medical advancements, evaluate the impact of health and social care interventions and shape future policy and planning. Conversely, some repeatedly opposed data being shared or sold to private organisations for commercial gain or for activities which are not in the public interest.
The use of safe havens and trusted research environments, international standards and interoperability were seen as vital to sharing data for research purposes, but challenges around the disparate nature of existing data sets were noted.
Respondents were asked how health and social care data could be used by industry and innovators, how this could be done transparently to maintain trust and confidence, and what would be considered an unacceptable use of data. Several ways in which data could be used to improve health and social care outcomes were suggested. The most prevalent theme was to drive medical innovation and advancements through research, followed by evaluating the long-term impact of health interventions, and shaping policy and planning. The most common objection to the use of health and social care data by industry was a concern the data would be used solely for commercial purposes or financial gain. Specific examples included using data for: market research and targeted advertising; developing and selling products and services; and predictive technologies such as insurance. Some noted that they were not wholly opposed to commercial bodies profiting from the use of population data if there were demonstratable benefits for the public or patients. Several felt it would be unacceptable to grant access to health and social care data for any research that is not in the public interest or does not have the support of NHS or the government, for example activity that promotes harmful health behaviours.
The most common suggestion for how industry and innovators can gain the trust and confidence of the public when using their health and social care data was through being open and transparent about how their data will be used and processed. Many suggested trust could be built by ensuring researchers only have access to aggregated and non-identifiable data. Another prominent suggestion was strict compliance with data protection legislation and ethical codes of conduct. Some felt trust could be built through innovators and industry making greater efforts to communicate the benefits of using the public's health and social care data.
A wide range of suggestions were made in response to questions about creating an infrastructure that supports access to data for research and innovation. These included: the value and role of safe havens or trusted research environments; ensuring infrastructure complies with international standards; interoperability; comments on cloud storage and open platforms; and independent auditing of infrastructure. Different views on ease of access to data were evident – some argued that processes should be clear and simple to engage with while others stressed that security should be prioritised. Respondents called on the Scottish Government to: provide clarity on key issues such as responsibilities, governance and security; allocate resources to build the framework or expand existing resources; and establish or allocate responsibility for infrastructure management and governance to a national body. Data needs and gaps faced by industry included the disparate datasets held by different organisations, data linkage, complex procedures to request data access, and concerns around data quality. Small numbers identified gaps in data relating to protected characteristics, equalities, and the social care sector.
Mixed views were expressed when respondents were asked about using Artificial Intelligence (AI) to improve the delivery of health and social care services, though on balance the majority of respondents were in favour. Many expressed a generally positive view, noting benefits such as earlier diagnosis and better treatment, the more efficient use of resources and the ability to derive new insight from large data sets. Several caveated agreement with an assumption that AI would be used in line with all relevant governance, regulation and codes of conduct, and alongside safeguards such as ensuring human oversight and recognising and addressing any bias in the data or setup.
Many individuals and stakeholders with detailed knowledge took part in the consultation, sharing their views on how health and social care data could be gathered, stored and used. Their views will provide a useful evidence base to draw on when shaping Scotland's first Data Strategy for health and social care.
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