Leeds’ people to help our city be research-ready

By Tim Ryley, Chief Executive, NHS Leeds Clinical Commissioning Group (CCG).

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At NHS Leeds Clinical Commissioning Group (CCG), we organise NHS services for the city. We work with 97 GP practices serving around 870,000 people.

Those services are for everyone, in all our communities.

But life is not the same for everyone.

As with most big cities, there are health inequalities in Leeds and many reasons for those inequalities. For the CCG and the city, one of our most important, shared aims is to reduce those inequalities so that people across all our communities can enjoy good health and wellbeing.

In Leeds and around the world, we are seeing that many people have fared much worse from the coronavirus because of underlying inequalities. If we can better understand how and why this is so, we can be more effective in tackling the problem. Indeed, we already have new, rich insights about this, such as those recently reported by Healthwatch Leeds.

Whether it’s related to the coronavirus or to other health challenges, the richer the information – or data – that we have, the better we can understand a problem and how to tackle it.

For most of us working in health and care, we deal with people’s personal health and care data every day. Developments in digital technologies , such as people’s electronic health records, have transformed the way that this data is collected.

In our city, thanks to the Leeds Care Record, health and care professionals can now access more than three-quarters of million people’s health records (data) to understand how best to care for them.

As well as for offering direct care, analysing people’s health and care data has, for decades, also been an important part of improving care research and service planning. University-based researchers and health service planners use that data to better understand how to improve services, trial innovations, develop new treatments and prevent ill health. This always means working carefully and safely within specific laws and policies.

But getting access to that data is not straightforward.

That’s because a researcher must get agreement each time from various organisations and from the people whose data is being looked at. We’re further limited because our data systems and technology aren’t as joined up as they could be, and there are too few people skilled in how to use and understand that data.

All of these things ultimately limit our progress in understanding how to reduce health inequalities.

A new Leeds project being planned this summer will start to explore how we can transform this and improve care for everyone more quickly and efficiently.

Named Living in Leeds, the new Leeds Academic Health Partnership project aims to help our city become ‘research-ready’. This must be done in ways which the people of Leeds agree with and support.

It will explore how we can develop a citywide approach for Leeds people, better join up our data technology and systems for researchers and planners and improve data analytics skills among our workforce.

So what are we asking of Leeds people?

People’s personal data is their personal data. So, as part of Living in Leeds, we want to understand their views and preferences about how their data is managed or shared, with whom and why.

The issue of personal ‘data’ was perhaps largely irrelevant to many people until just a few weeks ago. Then it landed on centre stage as governments around the world struggled to manage the pandemic. Our tea-time, TV briefings by the government paraded graphs and tables of ‘data’ showing how the picture was unfolding. And, as the virus took hold, the government introduced a range of new measures asking us to share our very personal data to help them understand and manage the crisis.

Suddenly, data and data sharing may have taken on new meanings for people and many may be justifiably worried or confused.

When it comes to our Leeds approach to data sharing, we will invite local people to help shape how we do this as a city. We want them to tell us how to best engage with their families and local communities about this. We want to listen carefully and respond and adapt to what we hear.

That way, together we are building something possibly even more important than technical capabilities or innovative healthcare. It’s called trustworthiness.

And that will make us all proud to be Living in Leeds.

Tim Ryley

Tim Ryley is NHS Leeds CCG Chief Executive and is the Leeds Academic Health Partnership board sponsor for Living in Leeds.