Sinead Mac Manus, senior programme manager, and Christina Cornwell, director of the Health Lab at Nesta, discuss why we must make sure people are involved in how the integration of technology is shaped
The NHS Long Term Plan for England sets out an ambitious roadmap for the health system over the next decade. As one might expect, it includes a clear focus on many of the priority health conditions but it also signals a significant shift, with the NHS doing more to tackle health inequalities and increase prevention.
We particularly welcome the focus on people having more control over their own health and the commitment to integrate technology for the benefit of all. At Nesta, we’ve been championing what we call ‘people powered health’ - and ‘people powered technology’ - for several years. So it’s fantastic to see these commitments recognised alongside the other major changes to the NHS service model.
The NHS Comprehensive Model of Personalised Care, published alongside the plan, goes even further. It brings to the mainstream many of the key principles and approaches we have been researching, funding and advocating for with partners over many years. This includes approaches like social prescribing, personal health budgets, and community-based and peer support. Importantly, it also includes a commitment to a different relationship with people based on choice, sharing control and understanding what matters to them. This is a welcome recognition that people need emotional and practical support to build their confidence and motivation, becoming active participants in decisions about their health and well-being - something we are exploring through Good Help.
We are also encouraged that the NHS recognises the need for it to embrace the next phase of the digital age. There are huge opportunities to use digital technology in healthcare: from artificial intelligence that spots the early signs of disease, to 3D printed limbs that can offer better and cheaper functionality than traditional prosthetics; from drones that can deliver organs on demand when needed, to new data sharing platforms enabling higher-quality personalised and integrated care. However, if it is badly-designed, technology can be dehumanising and a barrier to good healthcare. It can also be a very significant waste of precious resources. The NHS must therefore ensure that these innovations are designed and used to give people greater control over their health and data, rather than less, in ways that promote the public good and makes responsible use of taxpayers’ money.
Digitally-enabled primary care
Under the NHS’ Long Term Plan, digital-first primary care will become a new option for every patient improving fast access to convenient primary care. This is a welcome development which will see the NHS App become ‘a digital NHS front door’ providing advice, checking symptoms and connecting people with healthcare professionals.
Digital technology, and especially artificial intelligence (AI), can play an important role as the front door to healthcare, making it simpler, more accessible, responsive, sustainable and giving patients control. AI can help people find information about their medical problem and signpost them to the most appropriate method of support. It can also play a critical role in the triage stage - not every patient seen by a GP needs the expertise of a doctor. We know that 20 per cent of GP appointments are for minor medical problems that could be treated at home. AI-based triage products have the potential to free up appointments in primary care, but they need to be robust, accessible to all and used in parallel with the knowledge and skills of healthcare professionals.
Remote consultations are another way that technology can help relieve pressures in primary care. A study from The King’s Fund found that although remote consultations can involve some overhead costs, overall they reduce consultation length and improve accessibility. Furthermore, with a move to more people self-managing their conditions at home, citizens and GPs can now access over 70 apps that have been assessed and approved via the NHS Apps Library.
For the full benefits of technology to be realised in the health system, people need to be supported to embrace new technologies, especially those with low digital skills. But people should also continue to be offered non-digital options when needed - or when preferred. An app can never replace a human interaction but should be used to support and augment care, creating more time for healthcare workers to engage with patients.
We also need to ensure that GPs, including those in training, are equipped with the technology and skills they need to be able to evaluate and recommend digital technologies for their patients, while understanding their potential limitations. It’s therefore timely that Dr Eric Topol, commissioned by the Health Secretary to examine the future needs of the NHS workforce, has recently published his final report on how to best prepare the healthcare workforce for the digital technology of tomorrow.
AI and testing in the wild
Big data and AI are also making strides in early detection of chronic disease. Good progress has already been seen in eye disease, cancer, and even predicting Alzheimer's years before diagnosis. By bringing together biological, clinical and lifestyle information, we are starting to see the beginnings of more personalised medicine that could revolutionise our health. Better use of data and digital tools, and an understanding of wider determinants of health, will give us the ability to better identify risks and take action to help people improve their health and well-being - before they need care.
As we argue in our report on People Powered AI, Confronting Dr Robot, the AI driving personalisation needs to be people powered and ethical. AI should not be used in ways that exacerbate health inequalities, particularly for those who face the most challenges and disadvantage in relation to their health and well-being. Algorithmic bias must be countered by ensuring there is a diverse population of data scientists behind the design - and widespread engagement with the public to better understand people’s diverse interests and needs. AI is growing in complexity and autonomy but this system must embrace Explainable AI where the rationale for the decision making can be understood, questioned and held to account by ordinary citizens. There must be clear guidance from the NHS about ‘who benefits’ and whether the benefits are deemed ‘fair’. Citizens must be able to know when a decision about their health or care is being made by an algorithm or a person and have a mechanism to question the approach and decision. The government’s new Centre for Data Ethics and Innovation should take a lead role in this.
Furthermore, when dealing with complex systems, we argue that it’s no good ‘proving’ things are safe or reliable in controlled conditions - these are nothing like the context in which these technologies are going to be used. They must be able to test more complicated feedback cycles and data inputs, with measurable impacts on people’s choices, behaviours and interactions with services. We suggest real-world experimentation of AI in designated test sites, with non-AI comparators, to understand how AI works in complex systems before wider take-up ‘in the wild’.
The potential of data
Data has become one of the most important resources in modern healthcare. The collection, sharing and analysing of data can help identify disease earlier, create efficiencies, and transform the patient experience. The new NHS plan has the long overdue ambition to solve data interoperability across the health and care system, link clinical, genomic and other data to support the development of new treatments, and protect patients’ privacy, giving them control over their medical records.
However, there are real challenges and concerns around using patient data. With recent high profile scandals such as Facebook/Cambridge Analytica selling people’s data and the Google DeepMind/Royal Free Hospital failure to comply with the Data Protection Act, the public’s trust in how their data is shared and used in all aspects of life is low. It’s essential that citizens can put their trust in the systems used and that procedures for accessing and sharing data are transparent and understood.
To get around concerns about misuse of data, the NHS should support people to understand the benefits of sharing their personal data to provide insights that can help them improve their health and well-being. The data needs to be controlled by the individual and have clear consent models and mechanisms for who they share it with. Safeguards need to be put in place so people are not penalised for their lifestyle choices but are supported to make better ones.
At the same time as building trust and protecting people’s privacy, here is a challenge of how to build greater public understanding of the value of, and increase willingness to, share health and care data for their personal benefit, as well as the potential wider benefit for clinical practice, research and population health. In 2017, a PWC report found that although a majority of the public (92 per cent) are happy for their health records to be shared across the health system, only 20 per cent are comfortable with their health records being accessed by healthcare apps and 16 per cent by healthcare technology companies. This is potentially stifling much needed innovation.
This is the theme of a new programme we will be running in partnership with the Scottish government, looking at how to increase participation and trust in how data is used across the health and care system.
Conclusion
We welcome the NHS’ commitment to embrace the 4th industrial revolution and to use technology to improve people’s experiences of health and health outcomes, in addition to increasing the efficiency and productivity of health care. The potential benefits are enormous. However, people’s preferences and interests must be put first when designing and implementing digital technologies in health and care, and we need to give people the assurance they need to have trust in the technology and wider system. From embedding co-production in the design of digital services to getting the right regulatory framework in place - these details will be vital to ensuring that the digital ambitions of the Long Term Plan are successful.
Involving citizens and frontline staff in the design of digital tech for health can dispel concerns and issues raised. The government has a role to play in setting expectations and creating the right regulatory environment - but it’s up to everyone in the sector - those researching, designing, commissioning and implementing these new technologies to make it happen.
