Health and Care Data Wales — Benefits and Risks.
Jim Gralton – January 2024
Information Technology is being promoted as a virtual philosopher’s stone to address the problems of the health and social care not least in Wales where a revised “Digital and Data Strategy for health and social care” was published in July 2023 following the appointment of a Chief Digital Officer earlier in the year.
It is expected that the Strategy :-
- will empower citizens to manage their health through improved digital tools
- staff will have the right information at the right time to deliver better care
- less time will be wasted on administrative tasks with more time being made available for patients and
- data will be used to deliver insights to deliver a learning and innovative health and social care system.
The delivery of the project will depend on three main aims.
There needs to be an upskilling the workforce and the wider public to maximize the benefits of the digital transformation. This needs to be linked to greater partnership working across public and private organisations to generate innovation and improved service quality.
Digital platforms need to be in place which will be fully interoperable and able to share information across healthcare, local government, and approved providers as well as research and innovation communities.
Services will be digital first and build around the needs of users — both patients and clinicians.
Achieving these will be challenging with the Strategy delivery being underpinned by at least 27 different projects covering shared community health, ambulance, general practice and social care information, medicines management, patient access and video consultations, laboratory and radiology services, an all-Wales IT infrastructure as well as projects covering a range of administrative and management tasks.
But the challenges will not only be of a technical nature. IT innovation has frequently over-promised and under-delivered. Instead of improving things users end up “feeding the beast” or simply ignoring it.
Despite their obvious benefits, too often IT systems have gotten in the way by being difficult to use or being irrelevant to the priorities at hand. “Digital first” is already ubiquitous across health, social care and many public organisations as the prime means of accessing the service.
Very many users do appreciate the convenience that this provides but, as the Public Health Wales survey (2023) on digital health use in Wales shows, many others find it a barrier. It reported that only 20% felt that technology provided a better patient experience compared to 50% who disagreed. This was more likely to be the case with older people with poor health. And much less use was likely to made of IT to deal with clinical matters as opposed to getting information or administrative tasks. Though use has increased since Covid there does not seem to be any groundswell of enthusiasm to replace face to face care with digital substitutes.
There needs to be reasonable expectations on how fast people wish to engage with new technology and there needs to be a greater understanding of the problems that users face in doing so. There is a regular rhetoric about designing IT services around users without fully acknowledging the totality of the reasons why users still wish to give primacy to the personal human interactions.
It is hoped that IT will empower people to engage more actively with their health care but this not likely to happen if the user-interfaces are riddled with complex pathways, poor functionality and even problems with legibility. It must be of concern that the reviews of the NHS Wales App on Play Store have been as low 2 /5. And there is the risk, championed by Westminster Shadow Health Secretary Wes Streeting MP, that the NHS App could monitor local GP performance and patients would use the data to switch to the top rated GP. This is simply an unworkable proposal.
Maximizing the potential of digital technology must also garner the trust of those at the front end of the service as either services users or providers. Citizens understand that their health and social care data will be used across providers to deliver integrated, holistic care. They will also understand that this aggregated, non-personalised data is likely to be used for planning, performance monitoring and service improvement. There is also a role for this information in research and innovation but proper safeguards including the use of trusted research environments, such as the Swansea based SAIL databank, must be in place. In short where data is being used for public well-being and the common good, achieving a social consensus should not be difficult.
For many years Wales has been waiting for a “Data Promise” along the lines that “Health and care services will routinely, appropriately and securely share your identifiable data within health and care to deliver high quality, safe and integrated care. No identifiable data about you will leave health and care without either your explicit consent or legal requirement (such as for safeguarding)”. This sounds reassuring in principle but there are concerns that modern algorithms and access to a range of data bases can bypass conventional levels of confidentiality and personal data security. While the size of the Welsh NHS and social care base may be less attractive for attack, its smallness creates its own vulnerabilities.
Whatever the limitations of the Data Promise the updated Strategy only indicates that implementing it and putting a Data Promise Unit in place is still only at the “consideration” stage. This sluggish progress hardly inspires confidence and is in contrast to the Scottish Government’s more dynamic approach. As IT becomes more embedded within our health and care services it is crucial that progress is made on the Data Promise. This must involve a full debate on what will be covered by the Data Promise and clarity on what options the citizen will have to opt out of the more intrusive use of personal data.
The importance of the Data Promise becomes more obvious if data, in whatever form, is being used for purposes such as “… the private sector (using health and care data) to create added value, accelerate innovation and strengthen the economy of Wales. “ Many would regard this as being beyond what is acceptable. We all realise that the private sector has a role in health and social care innovation but it would be naïve to think that the main agenda of the corporate sector is public well-being and the common good. And beyond health care there are other sectors such as financial services, insurance, marketing and leisure would only be too keen to use health and social care “big data” to promote their own commercial interests.
The private sector is also likely to be involved in the supply chains for our health and social care, not only in supplying hardware like computers but also in crucial infrastructure and software development. The tendering process for the Federated Data Platform in England has give rise to great concern especially following the success of Palantir, which has roots in the US military-industrial sector.
Senedd Cymru (Welsh Parliament) has completed the legislative process for the Health Service Procurement Act in October 2023. This law mainly dealt with clinical services but the overlap with an expanded use of information technology is obvious. Concerns were raised at all stages of the Act’s legislative process about lack on explicit guarantees that it would not facilitate the privatisation of clinical services.
Assurances were repeatedly given that such protections would be provided in the regulations that follow from the primary legislation. Many similar concerns about private sector encroachment could be raised about the protection of data as outlined in this revised digital strategy.
As is the case with the NHS Procurement process, it is vital that the clear benefits from a modern digital and information system in Wales are underpinned by clear commitments in terms of data protection, confidentiality and its use for the public good.