In our latest HTN industry view, we sent out a call for comment to explore wider views on the Department of Health and Social Care’s new data strategy entitled ‘Data saves lives: Reshaping health and social care with data’.
We received a broad range of replies from healthcare and technology professionals across the industry, sharing what the strategy means to them.
Here is what we found out…
Ruby Bhatti OBE, a public contributor who supports lay views at NIHR, NHS England and at various universities, explained that she finds the plan refreshing as the public will get a better say in how their data will be accessed, used and stored safely. “It seems that they are going to place patients at the heart of the health and care data strategy,” said Ruby. “For me this means that up-to-date data will travel with me regardless of which care setting I am attending and certainly will have a great impact on my health as clinicians will be able to provide quicker and informed decisions around my care and treatment.
“I also welcome the strategy highlighting the importance of having a ‘two-way conversation’ and the need to be inclusive, including around communication, language, and accessibility, so that more of the public are engaged. Having an improved data system will have all stakeholders in the NHS talking to each other and will reduce the burden of waiting for information, which for me will result in saving lives and better decision making for the public.”
For Rob Findlay, Director of Strategic Solutions at Insource, the strategy’s foundational aim to improve public trust in the use of data is to be applauded. “Data most certainly can save lives and create efficiencies and care improvements across the service, but we need public buy-in and confidence,” Rob commented. “This strategy goes a long way to doing that, but the larger agenda here, of bringing social care into the fold, is a huge undertaking. With years of underfunding, only 45 percent of social care providers are using a digital care record and 23 percent of care homes have no consistent internet access – the challenge cannot be underestimated.
“The strategy talks a lot about connecting environments to transform care, enabling smoother transitions between NHS services and social care, giving health and care professionals access to the information they need at the point of care, but it makes no reference to the quality of the data. Surely with more public access to the data we need to ensure it’s correct!”
Melissa Morris, CEO and founder at Lantum, noted that the strategy is a clear acknowledgement of the importance of data in personalising and enhancing patient care. “For data to be effective, however, it must be captured in a well-structured manner so that it can be actually used. Garbage in is garbage out, and currently the healthcare system is burdened with a complex set of unstructured and unclean data hosted in a highly fragmented software ecosystem. Although the NHS data is highly valuable, there is an awful lot to do before it supports the improvements we hope for.”
She continued: “It’s also critical that there is a large investment in data literacy. Commissioners, practitioners and NHS managers need to fully understand how to make the best use of such important data sets so that the right data can be captured and used to be effective.”
The focus on social care within the strategy pleased Martin Bell, Independent Consultant and Director at The Martin Bell Partnership. “It will be interesting to see how this is fostered given the different mechanisms of the social care market to that of the NHS,” he said. “It’s very positive to see the focus on gaining public trust around the usage of data. This is vital, and we have seen before that people do care about their health data in a way that they might not care as much about other data.
“It will also be interesting to see how things like the Federated Data Platform procurement plays out, and whether the private company or companies that win this help to build trust – or not. It isn’t just about trusting the NHS; the underlying suppliers need also to be trusted.”
Tim Andrews, Chief Operating Officer of ORCHA, the Organisation for the Review of Care and Health Apps, explained: “The best digital solutions treat data privacy very seriously and provide very clear information about the collection and use of data to ensure end users are fully informed. Some exemplar products go a step beyond this and enable high levels of control over collected data by end users, so that decisions to ‘share’ data for direct use and research are very actively taken. If data is therefore to truly save lives, it is crucial that the products at the forefront of achieving this are fully assessed, and that end users are able to quickly and easily identify solutions they can trust.”
Culture change is desperately needed when it comes to data sharing in the NHS in the view of Jonathan Bradley, Business and Practice Leader, Granicus Experience Group (UK). “People should feel confident that they can subscribe to their local NHS, in the same way that they subscribe to any important services in their lives,” said Jonathan. “This behaviour is mission critical to the NHS so that people can receive and act on communications about their personalised care and broader self-care behaviour.
“The NHS needs more intelligent data on people’s experiences of health care, as well as views and opinions on local priorities for health, so that services can be planned and improved in a way that meets local needs. For too long, an absence of this kind of data has led to a blinkered or skewed view of people’s expectations for local health services and their day-to-day experiences.”
“Interoperability by default”
Paula Ridd, General Manager UK and Ireland, Altera Digital Health, stated: “I am pleased to see the strong focus on interoperability in the finalised strategy, which renews the commitment from the government to support a connected health and care system that will improve experiences for patients and clinicians alike. I hope that this will prompt suppliers across the sector to commit to open ways of working, rather than continuing to advocate inflexible legacy systems. While this is a final strategy, we are by no means finished talking about open data in the NHS.
“Additionally, we very much agree that data is the cornerstone of the health and care tech sector. However, this is only the case if this data is used, and when it is used, that it is done so responsibly. Collectively as a supplier base and sector we have a long way to go when it comes to developing, adopting and complying with standards, but it is essential if we are to deliver truly joined-up care.”
Steve Sawyer, Managing Director, Access Health and Social Care, said: “We are pleased with the commitments outlined in the strategy, and we are optimistic that they will have a positive impact on providers from across the health and care estate. The additional £25 million ring fenced for the digitisation of social care is crucially important to aid social care providers to level up their digital capabilities and meet the commitment for at least 80 percent of social care providers to have digitised care records in place by March 2024.
“As we see it, a key factor in the success of the strategy will be the consistent use of electronic patient record systems for the NHS and its adjacent organisations, with mobile integration ensuring staff have all of the information they need in the palm of their hand, regardless of the care setting they are in. Of course, we still face many challenges to achieve true interoperability and maximise the ability for data sharing across health and care, but the strategy represents significant progress towards meeting that goal, and we will be working with our customers to address the challenges they face, supporting them to make integrated care a reality.”
To Matt Cox, Managing Director UK and Ireland at Better, it was good to see “an increased focus on care, not just health, is a positive step forward in establishing better services for people and carers alike. We hope that the expected outcomes will be realised across the NHS at pace. We see the persistent approach to data and using open APIs as fundamental to this speed, particularly in transforming services, innovation, research, and cross-border initiatives.”
Michelle Blackmer, Chief Marketing Officer at Lyniate, commented: “Improving trust in data, reducing the burden on care professionals, and empowering researchers requires data to be accessible, connected, and accurate. Only with EPR agnostic tools that support data integration and identity data resolution will we unlock the power of data across health and social care. Working with partners that offer cloud-based solutions and health industry experience to develop flexible technical infrastructures is required to drive the innovations that will transform health care.”
Health data should be at the heart of the patient journey according to Nicolas Romain from Enovacom, commenting: “Data can be used to facilitate the daily life of health professionals and improve the quality of care. This is well illustrated by the updating of the electronic patient record by an integration engine. Indeed, the patient’s data travels in a single digital space and caregivers can access it easily.
“The era of interoperability now makes it possible to automatically retrieve health data from biomedical devices. By eliminating low-value-added tasks, the data integrated into the patient record is of higher quality and provides real-time information on a patient’s health status.”
For Chris Barker, Chief Executive Officer at Spirit Health, it was good to see the new strategy bringing openness, collaboration and shared learning to the fore. “We welcome the issuing of clear guidance for data protection rules for data-driven technologies and open standards for interoperability,” Chris said. “The new strategy is a good step forwards in preventing different solutions being developed to solve similar and recurring problems amongst providers. Whilst there are specific health and social care needs within localities, we strongly agree that “interoperability by default” should be the mindset going forwards . It is great to see that part of the new data strategy is looking to drive interoperability at the heart of the ICS model, which will help innovation, efficiency and benefit all.”
“Openness, collaboration and shared learning needed”
Rachael Grimaldi, Co-Founder and Chief Executive, CardMedic, explained: “For us, this strategy marks the beginning of a real commitment to collaboration, stepping away from siloed ways of working, and ushering in a data positive culture throughout the health and care system. The innovation that comes out of the NHS is remarkable and has great power to improve patient care. As someone currently navigating the tricky path to embedding technology in the NHS, the strategy’s commitment to working with innovators to develop and deliver their solutions is welcomed news. The next phase of our roadmap is electronic patient record integration, and it is reassuring to know that we will be supported on this journey.”
It was encouraging to see that the strategy features a new section on health inequalities for Mark England, CEO at HN, including how artificial intelligence can help to reduce health disparities. “This is so important if we are going to lessen the gap in health outcomes between different places and communities across the country – especially as we move towards ICS’s and more integrated working,” said Mark.
“Machine learning and AI has the ability to keep people out of hospital, for example by predicting people who use urgent and emergency care frequently, which can affect those from the poorest backgrounds. I’m pleased to see that there is now dedicated resource into reviewing and improving data quality within the health and care system. Through continued investment and with the soon-to-be published standards and interoperability strategy I think the NHS can now actively work towards person-centred care and reduce the data burden for frontline staff.”
“For me, the question is: how are we going to get there?”
Jamie Clifton, Head of Vision and Strategy at BridgeHead Software said that the strategy “lays down great intentions and provides a good statement of the potential benefits that could be achieved by harnessing social care data. And I don’t think that anyone would argue with those goals. For me, the question is: how are we going to get there? And, as always, the devil is in the detail. To make this model fully operational, we need to look at both historical patient data and future patient data. The future is easier, because I assume that new data will be created following the new data standards, though it’s still complex.
“Historical data, which is enormously valuable for activities such as machine learning and artificial intelligence, is going to be very difficult to retro fit into a format that allows, for example, easy search and access to this information. I often use a phrase, “before you can share with others, you need to be able to share with self”. I would expect that the data collection and management within social care fails the first part of the above statement (“share with self”) primarily as there is so much data ‘locked in’ to disparate silos spread across the healthcare economy. Consolidating this data in a usable way is not trivial and has the potential to derail the strategy if not properly considered.
“In summary, I believe everyone will generally agree with the goals and intentions of the strategy. But, agreeing on how data is collected, formatted, managed, and how it will be used in the future must be fully considered and then implemented – make no mistake, this is a difficult and significant undertaking.”
For Alexander Ryan, Senior Director EMEA of Hyland Healthcare, the fundamental issue is, and always has been, one of trust. “As the NHS rebuilds public confidence, following unprecedented pandemic pressures, the question is whether the strategy is sufficiently ambitious and fit for tomorrow’s security and privacy challenges. Four years since the Data Protection Act came into force, patients and hardworking NHS staff have a right to expect that the public’s rights in law and the common law duty of confidentiality are upheld and that appropriate steps are being taken to encrypt and anonymise data. Rigorous measures should already be in place to safeguard compliance.
“A key focus must be the development of technical infrastructure, based on open standards, which will create a platform for secure, interoperable and patient-focused insight. Addressing the wide-ranging needs of all stakeholders, from clinical and operational, to research and individual patients, this must go beyond purely ‘secure data environments’ and actively address cyber threats.”
Steve Cairns, Head of Architecture, OLM Systems, said the publication of the strategy is a significant milestone in the UK data landscape: “The Government has acknowledged the need to not only make optimal use of the data collected across Health and Social Care but the fundamental need to improve public trust and confidence in the use of that data.
“Improvement in public trust will need substantial resources focused on several areas, and it is welcome to see that acknowledged in the paper. The creation of trusted research environments will provide the necessary platforms to take advantage of the improved sharing of data and do so in a way that builds public confidence and understanding. Full transparency of data governance and the use of this data by private organisations will be a major barrier for the government to overcome, but one that is essential to achieve to successfully deliver the aspirational goals set out in the document.”
There is huge value potential for the NHS in harnessing and utilising data sets, said Antoine Lever, Commercial Director at babblevoice. “From a telecoms perspective, the high value of telephony metadata is often overlooked,” explained Antoine. “At surgery and PCN level, we regularly see our customers use analysis of this data to significantly improve surgery management. From improving patient flows through the surgery, predicting reception workload peaks, to sharing inbound calls to enable load balancing between surgeries. I am convinced that both real-time and historic telephony data can provide critical insight for primary care.”
Matt Honeyman, Policy Lead at accuRx, added: “It’s positive to see the Health and Social Care Secretary put such emphasis on the impact data can have on the healthcare system. Collectively, NHS staff lose thousands of hours a week trying to get hold of information that should be accessible and is needed to make safe clinical decisions about patient care.
“We strongly believe that the information potential stored in health records can’t be properly realised unless they are able to be shared and used collaboratively across teams. It’s why we built Record View, our nationally available patient record sharing solution. Health systems need to be provided with the ways to communicate and engage with patients, and others involved in their care, off the back of records, allowing staff to make faster clinical decisions, saving time and improving treatment times.”
Thank you to all our contributors for providing so many insightful comments.