Healthcare data: Joining the dots
Data sharing has been an ongoing issue in the health and social care sector for patients and between the healthcare agencies delivering their care.
We have seen issues arise when data sharing is required between healthcare agencies and there are insufficient procedures in place to support the safe and timely transfer of documents to ensure swift, multi-agency cooperation. Furthermore, there are, understandably, concerns within the sector in relation to the digitisation of care and associated records, and the challenge of training and engaging staff in that process.
It is clear that this has been at the forefront of minds within the Department of Health and Social Care (DHSC) and is reflected in the final version of the DHSC's data strategy. 'Data saves lives – reshaping health and social care with data' has been released following a draft version which was released for consultation last year (the Strategy). The former Secretary of State for Health and Social Care, Sajid Javid stated that 'if we put this plan into action, and unlock the incredible power that data possesses, we can bring the future forward and make us all healthier and safer.'
This Strategy comes with extensive proposals, with a strong focus on data sharing to support an integrated and technology-driven health and social care environment going forward and underpinned by vast commitments (over a hundred) from DHSC as to how the proposals will become a reality.
We highlight below, underlying themes and proposals within the Strategy, and their potential impact upon those operating within the sector.
The underlying message within the strategy is to recognise the vast opportunities that we have when it comes to data technology and how that can support us going forward. However, there is a sensitivity around the public having confidence that healthcare agencies are using / handling data in a safe and secure way. This requires a crucial balance between sharing information to improve care and ensuring that personal data is protected. Staff training and robust yet streamlined systems will be at the forefront of driving these objectives.
There is a strong focus on the drive to improve the digitisation of care records. The DHSC has made a commitment that, by March 2024, at least 80% of social care providers will have a digitised care record that can be connected to a shared care record.
Secure Data Environments
The Strategy indicates that in order to build further trust in the way health and care data is accessed, new privacy-enhancing technologies will be brought in to ensure the safety of sensitive personal data.
Secure Data Environments could be a positive step towards accessing data securely in a virtual setting, with any data analysis taking place within a secure online platform rather than data being shared only via physical transfer. It appears that a flagship programme to develop such a platform is in the pipeline, subject to approval from the Treasury.
Ensuring fair terms for data partnerships
Strong and effective data sharing partnerships between health and social care agencies are essential to improving care for individuals. Fair and robust terms for data partnerships between organisations in the sector will support healthcare professionals to do their jobs efficiently, whilst safeguarding patient data.Access to all relevant and available information via the platform and technologies envisaged, should enable staff to provide joined-up, patient-centred care, whilst also freeing up staff time spent on administration, and improving data accuracy.
In particular, safe and responsive data sharing is essential when patients are transferred from one provider to another.
Essentially, the focus here is on ensuring that health and social care professionals have easy access to the information that they need to provide the best possible care. The new data partnerships envisaged in the Strategy are likely to go hand in hand with the proposed Secure Data Environments and may be a game-changer when a new provider takes over care of an individual.
By the end of 2024, DHSC state that the goal is that 'every person and the health and care professionals involved in their care can draw on information from, or put information into, the same shared care record in a safe and straightforward way.' Such a system would no doubt be welcomed in light of the drive towards person-centred and joined-up care, however, the logistics of allowing patient records to be accessed and added to by patients and multiple professionals, require further thought. In particular, the benefits of such universal sharing must be considered alongside the need to protect the privacy and integrity of health and social care data, and consideration as to who will ultimately retain responsibility as the data controller.
Easy Access to Information for Staff
Easy access to patient data is essential for staff to provide the best possible care. The DHSC has provided reassurance in the Strategy that health and social care staff will have:
- Systems that provide quick and easy access to information about the individuals receiving care, and those professionals or unpaid carers supporting them;
- Confidence about when and how data should be accessed, allowing staff members to feel empowered to access data for the benefit of individuals.
The intention is to enable health care staff to pursue a multi-agency, person-centred approach to care. In addition, the Strategy aims to reduce administrative workloads for staff connected with the collection of data and the inefficiency and frustration for patients having to repeat themselves each time a new professional becomes involved in their care.
Simplifying Information Governance & Data Sharing
Research completed by the DHSC found that frontline staff were concerned about the potential repercussions of a mistake or data breach, and there was a lack of understanding around information governance. The Strategy seeks recognition within the sector that the duty to share personal information can be as important as the duty to have regard to patient confidentiality. This is all well and good in theory, but how can staff have the confidence that sharing personal data is the right course of action?
The DHSC states that we need to leverage maximum benefit from information to enhance patient care and improve services, which can be achieved by working in 'multi-disciplinary informatics teams' to solve problems and find solutions. In practice, such teams will include IT, ethics and information governance teams. It is intended that there will be a simplified system with a consistent approach for managing data access requests, built on a common understanding between data sharing partners, use of templates and agreed standards.
An overarching theme within the Strategy is the need to share information appropriately for the benefit of everyone using health and care services. It is intended that effective systems will be in place for sharing anonymous health and social care information amongst organisations where appropriate, and for an extended shared care records programme to be put in place, which will allow care staff to see a person's information in one shared record.
The current reforms do not appear to specifically deal with the question of consent, which has historically made it difficult for Health and Social Services to share information. However, it is clear that a major strategy is in place to ensure the transparency and ease of data sharing. Health and social care providers may have to wait some time for real changes to be implemented (with the key time frame currently stated as December 2024), but the digitisation of care records is coming. The question for agencies and providers will be the level of training and culture change that will be required for staff members, ensuring an appropriate balance between the need for a joined-up approach to health and social care, and respect for the personal data rights and confidentiality of individuals.
Whilst there may be some considerable work to be completed by agencies in the first instance to digitise all of those records and understand the new regime, ultimately this should make a real difference to the ability to share information and ease the burden on staff when it comes to data collection.
Many will see this strategy as a welcome step in the right direction however, in the meantime it remains important for agencies to take ownership of the data they are holding and ensure proper record-keeping, timely and accurate data sharing is taking place, to avoid any vulnerable individuals slipping through the net.
The DHSC is working to deliver the commitments it has made in the Strategy and will report on progress as the extensive plans develop into actions.