Kay Boycott argues that while data sharing is imperative to transform NHS care, it must be married with the use of new healthcare technologies, robust safeguards and continuing dialogue with patients.
Data is dominating the news agenda; from Cambridge Analytica, to GDPR, to the launch of the NHS’s national data opt-out. The arguments in favour of data sharing in health are well rehearsed; whether for boosting patient safety, informing research or ensuring joined up care. Equally well rehearsed are the arguments against; worries about data privacy and security, unintended bias and the degree of transparency required.
But if we really want to transform the NHS, it’s not enough to simply share the data. Data needs to be used effectively and be married with new healthcare technologies, robust safeguards and informed by dialogue with patients. We believe that by understanding the interplay between data and technology in asthma, we could inform the route map for other conditions’ use of data as well.
The first important factor in successfully using data to transform NHS care is having a large, accessible patient population with significant unmet need. Asthma affects 5.4 million people in the UK and all parts of the NHS, and most healthcare staff will come in to contact with people with asthma daily.
Despite costing the NHS £1.1bn per year, the death rate for asthma in the UK is the sixth worst in Europe. In January this year, Asthma UK’s annual care survey showed that two-thirds of people with asthma are not receiving the basic care. This is despite the fact it has been proven that two-thirds of asthma deaths could be prevented with basic care.
Almost nine in 10 people with the condition said they would be happy to use a smart inhaler if it was available from the NHS and 90 per cent said they would be happy to share this data with researchers
However, an accessible population and clear target for improvement is not enough. People must also be confident about the use of their data. Asthma UK’s report out today Data sharing and Technology: Exploring the attitudes of people with asthma reveals that almost nine in 10 people with asthma (83 per cent) would be happy for their data to be shared to improve NHS services.
A similar proportion of people with asthma (88 per cent) were also happy for their data to be shared for research, which is higher than the general population (77 per cent).
This confidence that there is a large population of citizens positive about data sharing is even more critical as we enter a new era of personal healthcare devices, including wearables, that can provide new types of data.
Examples are smart inhalers – devices fitted to an inhaler which can detect how someone is using their inhaler and send the data to a smartphone or healthcare professional in real time. This could be used to detect if a person with asthma is using their inhaler too much or too little (a sign that they need to see their healthcare professional).
This stream of precision data could allow GPs and asthma nurses to adjust a person’s care dynamically. With appropriate consent, the cumulative data from new technologies could also be shared with researchers, to inform new treatments and service delivery. Used consistently across a locality, technology such as this could enable NHS trusts and commissioners to stratify risk and allocate their resources effectively.
The NHS has a huge opportunity to take a global leadership role to revolutionise care by leveraging data and new health technologies at a scale not seen in other countries
Our report, surveying over 3,000 people with asthma of all ages, also reveals an appetite from people with asthma to use this kind of health technology. Almost nine in 10 people with the condition said they would be happy to use a smart inhaler if it was available from the NHS and 90 per cent said they would be happy to share this data with researchers.
So, how do we get patients and healthcare professionals to effectively use data and healthcare technologies to improve services? Put simply we need to get on with it – the technologies exist, the patient appetite is there – last year our Smart Asthma report outlined how we could stop theorising about potential and instead start testing in the real world at scale and in primary care.
Throughout we will need to be clear and transparent with patients about how their data will be used so they understand the benefits. There needs to be a continued and informed public dialogue about data sharing. Healthcare professionals need to play an active role in explaining to patients how data sharing can save lives.
None of this is familiar or easy but the NHS has a huge opportunity to take a global leadership role to revolutionise care by leveraging data and new health technologies at a scale not seen in other countries. Most of all, we hope this provides new options for the UK to improve the currently shocking death rates from asthma.