In early 2021, NHSX announced that all sustainability and transformation partnership (STP) and integrated care system (ICS) organisations should endeavour to have a Minimal Viable Solution (MVS 1.0) shared care record (ShCR). Fast forward 18 months and ShCR projects have emerged all over the country striving to fulfil this request, and unsurprisingly, facing similar challenges along the way.
Channel 3 has worked with several systems and the Association of Directors of Adult Social Services (ADASS) regions to gather their ShCR views, experiences gained and aspirations for the future.
This article, produced in partnership with the Local Government Association (LGA), draws upon these sector discussions and our experience and expertise gained through being involved in ShCR implementations within one-third of all ICSs across the country.
We cover the following topics:
We understand that whilst there is common best practice that can be followed, each health and care system faces unique challenges. Contact us to discuss your local requirements and aspirations.
The nine common challenges faced by systems implementing ShCR implementations are summarised as:
Due to the MVS 1.0 being based on data points to be shared, the delivery of ShCRs has had a necessary focus on the design and implementation of the technology. The earlier ShCR adopters captured a range of benefits and use-cases supporting the introduction of shared care records, however the drive for scale and pace resulted in most ShCR implementations focusing initially on the technical aspects. This resulted in limited attention on the transformative impact and value that they could deliver, how they can improve lives and the efficacy of local health and care systems. The technology approach has been focussed on collecting data (data in), more than providing insights that give care providers the information needed to provide the best care experience possible (data out).
Due to the tight timescales, most ShCR projects have begun implementation without all the necessary strategic oversight and planning. This has resulted in exercises in technical compliance, as opposed to meaningful change and a risk that we lose an opportunity for transformation of health and care. It isn’t transformative to simply share information across an ICS. There needs to be a level of ambition to create multi-agency pathways across the patch, using a single record for a person. Focussing on this broader ambition for working together in new ways overcomes the risk of implementing tick box solutions that deliver limited value. Experience suggests that where that ambition to transform using ShCRs is not yet fully realised, it is typically because key stakeholders are still maturing towards the shift from individual organisational priorities to true system-wide working.
There are two key areas that pose challenges to data sharing. They are:
The biggest concern is to manage risk and ensure that the coming together of organisations does not increase the vulnerability of systems and data. As most ShCRs are hosted in the cloud, independent penetration testing must be conducted, which can often delay projects due to a lack of resource and/or expertise.
2. Information governance
Concerns are often borne out of different approaches to managing data between health and social care, for example, an identity change in children’s social care requires a fundamentally different approach to an identity change in health. Reluctance to share data can also manifest itself at different tiers, for example:
3. Legal responsibilities
Health and care organisations have different legal responsibilities in relation to confidentiality and disclosure of information. These legal responsibilities can create barriers to data sharing across organisations and for different purposes.
The current focus on sharing and aggregating data is a necessary first step, but the key will be to tailor the information that different organisations and stakeholders get from the ShCR. For example, a common challenge has been integrating data coming through GP Connect, as it is not ‘structured’ and is not aggregated or presented in the same place as data from other health and care providers. Failure to compile all relevant data into a single, comprehensive story of an individual has a negative effect on the person’s health and care journey.
Although communication channels between healthcare organisations, patient groups, social care organisations, older people, disabled and carer groups, tend to be well established, communicating with the wider population beyond the boundaries of healthcare can often be difficult. People may have a limited appetite to share their personal health and care data, in general, or with selected system partners, due to concerns about how that data might be used, for example, a person’s sexual health information being shared with social care.
People will often look to their GP, as a trusted messenger, to decide whether it is safe to share their data with other health and care providers. As such it is important that GPs understand the benefits and support the approach to data sharing, alongside navigating any data sharing guidelines from professional bodies. Equally important is open communication with people on the benefits of ShCRs for their health and care, with clear information on how to opt in.
The success of ShCRs is dependent upon the maturity of the whole system working together. As such, individual organisations often need to put the priorities of the ShCR above their own. This can be difficult to achieve, especially when organisations are under operational and resource pressures. The technical work required to put individual organisational data into the record is a challenge given these stretched resources, and there is often no immediate value for that organisation, which can lead to this work being deprioritised. Current governance does not always focus on the maturity conditions or ambition required for the successful delivery of transformational benefits from working together as a system.
Due to the necessary focus on embedding the ShCR technical solutions, winning the hearts and minds of those at the frontline who will realise the benefits is often overlooked. Not enough time has been spent on working through ‘what’s in it for them?’ or how the care of the people they support can be improved. As a result, take-up and usage are lower than they should be.
Guidance dictates that ShCRs should be launched within the context of existing systems. To do this, ICSs are having to engage with multiple suppliers independently. If this happened in a coordinated fashion across ICSs, ShCR projects would have increased leverage to negotiate with suppliers and achieve greater economies of scale for required developments or upgrades.
The initial funding to kick start ShCR projects has been through capital investment from NHSX via the Unified Tech Fund. This will progress most systems to phase one of implementation, in having a technical solution being used for limited operational care. Whilst this is an important step in building foundations, further work is required to deliver the service transformation to drive the benefits from ShCRs, and in improving the health and wellbeing of the population. This requires resources – staff, funding, and technical infrastructure – to manage this change and create a new model of care. Understanding where this resource is coming from, and how it is going to be funded, will be critical.
In summary, there is a wide range of challenges that need to be overcome if the sector is to realise the ambition and true value of ShCRs. The next section looks at what is required to move forward successfully.
By combining the intelligence gained from the sector on the challenges with our own experience of delivering successful ShCR implementations, Channel 3 and the LGA have identified eight conditions for success that will help unlock the potential that ShCRs offer the sector moving forward. These are:
These are described in further detail below.
Collaboration across health and care organisations is, without a doubt, the key to a successful ShCR procurement and implementation. To move beyond a technology-led approach, local systems must engage with frontline staff and users to lead design and implementation. The design and delivery of the ShCR must be grounded in user journeys to identify clear benefits and resolve tangible pain points. Local projects need to instil a ‘pull’ from the frontline care professional, rather than relying upon a ‘push’ from the technologists.
Dawn Atkinson, Head of Programme for Joined Up Care Derbyshire
The multi-disciplinary team we have had around the table has been absolutely key. They brought enthusiasm and a great desire to get the job done as they all understood the benefit the ShCR can bring to the system
The help that local systems need to progress the successful delivery of ShCRs will vary depending upon their level of digital maturity and where they are in their delivery lifecycle, for example, if they are at the design stage, optimising existing solutions or changing from an existing solution to a new one. A single approach to transformation will not work. The complex system dynamics will also vary within each local system and need to be understood and effectively managed through any successful transformation journey.
Richard Greaves, Head of Digital Transformation at Somerset CCG
Our model of governance has been key to the success of our ShCR. We stood up governance forums for specific workstreams which enabled Subject Matter Experts (SMEs) to focus on what they are good at, for example, information governance, clinical safety, technical assurance, and overall strategy
The benefits of a ShCR are directly dependent on the willingness of people to share their data, not just for direct care but also for future population health management. Ensuring communications and engagement plans go beyond the boundaries of health organisations, to be inclusive of organisations such as councils, care providers, third sector voluntary organisations and housing associations, is key. This can be achieved through various communications channels and media, however, it is essential that the messaging is accessible. It must be tailored to address the needs of all individuals, being sensitive to the language they speak and any disabilities they may have.
To gain maximum positive responses, the messaging should also focus on the benefits of data sharing to the individual (including only having to tell your story once, and any future health care professional will be aware of your history without having to repeat the same story) and dispel myths or concerns about the perceived risks of data sharing.
ICSs have the opportunity to be transformative in unlocking the successful delivery of the ShCR and its transformational benefits. However, to achieve this system leaders in councils and health organisations will need to come together to understand the whole system benefits of having a successful ShCR and set an inclusive ambition, before committing resources from their individual organisations to support implementation.
ICSs have a key role to play in developing broader partnerships working with integrated care providers (ICPs) and the local provider landscape to provide leadership and investment, and where this does not occur this should be identified and highlighted through governance processes. This will help create the required professional norm that ShCRs will be consistently used to provide the foundation for improved health and care.
Richard Greaves, Head of Digital Transformation at Somerset CCG
Our motto has been to ‘go where the energy is’ and then bring others on as and when they are in the same position. We were extremely fortunate with our council as they are very forward-thinking and digitally mature and they have blazed the trail of the shared care record.
Local systems must invest more in articulating how the ShCR will improve outcomes for people receiving care and support (better lives) and how it will enable frontline staff to transform how they work in an integrated way (better care). All successful change is delivered by people, and people first need to buy into the need for change before they make it happen. Given that people can continue to work as they do today without impact or reprimand if they do not use the ShCR, we can only motivate frontline staff to engage in the change journey by tapping into their core purpose to improve outcomes and lives.
Jim Austin, Chief Information and Transformation Officer for Derbyshire Community Health Services and Digital SRO for Joined Up Care Derbyshire
Our programme has been professionally and clinically led. It started with outcomes first with the technical following behind. This has enabled us to work at pace whilst maintaining good engagement across the board.
To date, the success of driving through the implementation of the ShCR MVS1.0 has been the mandate from the centre. However, as previously stated, this has focused primarily on embedding a technical solution rather than driving the benefits of transforming care. To ensure a similar focus on transforming care, the centre (NHS Transformation working with other public sector partners) must be clear that implementation does not stop at technical implementation.
Further work is required to digitally enable staff, change ways of working and transform the model of care, which will also help shape the records required to support the new models of care. Further direction, deadlines, guidance, and support are necessary to set the platform for ICSs to take forward and ensure that ShCRs do not become a white elephant.
There will always be technical barriers that arise in a ShCR implementation. Channel 3’s experience, derived from the systems we have worked with, is that some of these barriers can be mitigated with the following tactics:
Although most ShCRs are meant for direct care to begin with, the real power comes through the triangulation of population health, shared care records, and personal held records. This creates a single version of the truth and converts the available data into relevant insights, specific to individual roles or organisations. This integration will allow ICSs to move towards being far more proactive and preventative in the delivery of care. Integrated data sets will highlight the links between health and care outcomes and the wider determinants of health. This in turn will enable systems to accurately target their scarce resources at interventions that will have the greatest impact.
Astrid Fairclough, Programme Director for Wessex, and Dorset Care Records
Fast deployments can mean that decisions are made about incorporating data into the ShCR in ‘any form.’ As we have been live for over 2 years, we know this can have ramifications further down the line, especially when looking ahead into using data for population health interventions and research. It is key that ShCRs follow a data standard-based approach.
MVS 1.0 was a great start, and now that most ShCR initiatives seem to have already delivered on it, ICSs are starting to look at what their roadmap is going to look like. Whilst high-level planning guidance has been issued that provides a national view on the next steps, Channel 3’s observations are that regions are prioritising things differently to reflect their own aspirations and digital maturity.
So, what can systems do next to maximise the value of ShCRs:
Laura Godtschalk, Programme Manager of Leicester, Leicestershire and Rutland Care Record
The shared care record programme has really helped us work more closely together as we transition into an ICS. Our work, however, has only just started, as our shared care record is an ever-growing initiative that requires continued development and optimisation as local digital maturity increases.
Channel 3 and the LGA are looking to support local systems in taking ShCRs to the next level. If you have found the findings and recommendations within this report helpful and you would value exploring them further for your local system, please contact us using the details below.