With more pressure than ever on health and care, bringing together improvement and digital in ways that empower patients and staff, innovate new solutions and enable better care is critical.

As part of our online Q community event on Tuesday 18 October 2022 we held two sessions that looked at how bringing together digital and improvement can transform our work – including through the creation of learning health systems.

The first session was co-hosted by Malte Gerhold, Director of Innovation and Improvement at the Health Foundation and Breid O’Brien, Director of Innovation/Digital Health, NHS England. Participants heard from two Q members, Emma Vaux, Consultant Nephrologist and Physician, Royal Berkshire NHS Foundation Trust and Alka Ahuja, Consultant Child and Adolescent Psychiatrist, Aneurin Bevan University Health Board. Emma and Alka shared their work on their respective Q Exchange and Q Lab UK funded projects and this gave participants a chance to learn from their practical experience enabling change.

The second session was hosted by Tim Horton, the Health Foundation’s Assistant Director (Insight & Analysis) and supported by Nell Thornton-Lee, Improvement Analyst and Tom Hardie, Improvement Fellow at the Health Foundation. They shared insights from the recently published Learning Health Systems report. This was brought to life through Ingrid Wolfe, Director of the Institute for Women’s and Children’s Health and Martin Wildman, Director of Cystic Fibrosis Hub who both shared perspectives and experiences from their learning health systems.

Valuing what works

Proposing that improvement and technological innovation can – and must – work together, Breid O’Brien reflected that in health care we often conflate the two. Improvement (making something better) and innovation (making something new) are both important and need to be valued in terms of patient outcomes.

‘We need to think of innovation as not just the thing but actually the process and the people involved in its implementation and that’s where I don’t think you can do it without improvement,’ Breid said.

Malte Gerhold discussed the difficulty of huge amounts of data matched with a poor understanding of what data would make the biggest difference, for example in social care.

We need to think of innovation as not just the thing but actually the process and the people involved.

Breid acknowledged that the amount of data can become completely unmanageable. Yet, in some instances there still wasn’t the right data available to make the right decisions.

‘It’s not just about data, it’s about trust. People will only share data if they trust,’ she said, giving an example of health care and social care teams being reluctant to share patient data because the trust was not there.

Finding a common language

Language is incredibly important and the panel discussed the need for a shared language between clinicians and digital colleagues as well as the need to carefully consider the language used to communicate with patients through technology.

‘I often find myself acting as a translator and I do call out where I think people use specialist language to retain power – because that’s not collaboration,’ Breid said.

It’s about having the conversation about what data is necessary, what’s needed from a clinical point of view, what’s need to make a difference.

A key to success was improvement teams and clinical colleagues involving IT and technology partners from the outset and vice versa. Finding a common language in order to include colleagues across disciplines and considering impact across the whole system required everyone.

Alka Ahuja, whose Q Lab UK project creating technology-enabled remote monitoring for eating disorders in young people, stressed the need for an open dialogue between health providers, schools and education.

‘It’s about having the conversation about what data is necessary, what’s needed from a clinical point of view, what’s need to make a difference,’ she said.

Emma Vaux shared her work creating a culturally appropriate, avatar-led, digital programme and counselling tool to support renal patients to manage their self-care.

‘Visual language is so important,’ she said, explaining that patient information was traditionally a black-and-white photocopied information leaflet. ‘We can’t underestimate health literacy and where there is a language barrier, bringing it to life with visuals can make a big difference. Some people still like written information. So it’s important to recognise that not one model fits all, it’s about being flexible and responsive.’

Flexible, patient-centred solutions

This theme of flexibility and a relentless focus on the desired outcome of improving people’s lives spanned both sessions.

Often it may be that fluidity is needed and us as clinical teams to flex up and flex down.

Alka explained that their app originally took a stepped approach to young people’s mental health but when they tested it with young people it became clear that it wasn’t that simple.

‘With young people things fluctuate depending on social circumstances, what’s happening at school and in their personal lives, academically. Often it may be that fluidity is needed and us as clinical teams to flex up and flex down,’ she said.

They adapted the app to a windscreen approach where young people could choose the support needed at the point they needed it.

Martin Wildman from Cystic Fibrosis Health Hub explained their goal of empowering prevention and enabling people with cystic fibrosis to lead a normal life.

‘What’s the other side of the river we’re trying to get to? What are the metrics? How will we know if we’ve got there? Are we collecting the right data? It’s that continuous improvement, driven by data but actually always focused on how we get better,’ he said.

Goals first, technology second

The speakers were clear that in learning health systems, technology is the enabler and not the driver. ‘We were not obsessed by technology, we were obsessed by behaviour. Our behavioural destination was to create habits,’ Martin said.

Tom Hardie explained that learning health systems were an evolution of QI – a way to embed improvement into business as usual, operating across different levels of a system.

We were not obsessed by technology, we were obsessed by behaviour.

‘Learning health systems can give teams and providers the tools they need to diagnose and solve problems and drive improvement from within. They can turn providers into engines for innovation and improvement.’

Ingrid Wolfe emphasised the benefits of technology to bring together data sets from different levels of the system to solve problems for patients and the population. She said digital ‘helps us to go from technology and data modelling through to processing and analysing that and reporting back to patients and to clinicians the information that really supports decision making in a clever way.’

Watch the sessions on YouTube and share your thoughts in the comments below. 

Resources

QLab project: The virtual hug of support

Report: Developing learning health systems in the UK: priorities for action