It’s time to get serious about sharing good quality data

There is no doubt that long COVID-19 will present a unique set of challenges to our health and care system. A significant impact on community care services is inevitable with disruption to other pathways, and disproportionate impact on the most vulnerable in society.
 
The NHS is rightly focused on reducing the elective care backlog. However, we also need to take a whole system view, trying to help primary care, mental health services and social care services recover.
 
Key to our success will be good quality, readily available data, for the whole system. At the beginning of the COVID-19 pandemic, we knew that social care capacity was critical but there was variable access to data on this sector – capacity, occupancy, staffing resilience and so on, so we had to rely on our local networks and intelligence. Similarly, we relied upon networks around the country to determine what was happening with COVID-19 admissions and occupancy.
 
A recent study in The Lancet highlights the example of our efforts to reach shielding patients at the beginning of the pandemic as a good reason for needing easily sharable and accurate data. When drawing up shielding lists, it was found that data was not always up to date. GPs and hospital consultants were required to manually verify patient lists which frequently required amendments. The nature of the process meant many individuals who should have been notified were not and vice versa.
 
Accessibility to data can drive system wide improvement
We know that variation is our enemy – productivity, system resilience, outcomes, new methods and techniques and yet, in the wake of the pandemic, many hospitals still do not know how they compare with their peers, or with other systems when it comes to the elective care backlog. Some hospitals no longer have a good grip on how many patients are on their elective waiting lists and what their health status is and priority for treatment should be.
 
As a chief executive of an NHS trust providing a broad range of health and care services to over half a million people, we are part of a high functioning health and care system. I should be able to see how we are doing compared to other systems, where the leading-edge practice is, and where improvement opportunities sit, within two clicks. We need this insight to be able to forecast where will be in six months’ time so we can capacity plan for winter.
 
Better access to data not only helps us meet the challenges ahead, but transparency also helps to drive data quality. We all need to be able to trust the data and sharing data will drive the correction process.
 
However, given the difficulty in accessing whole system data, we are now looking to develop our own three-year plan. This will see us using our own data and analysing it ourselves, across our system, to help us recover, improve, and face what lies ahead together.
 
Above all not having a clear picture of where we are is confusing for patients. There is a lot of noise about the elective care backlog with an estimated 5 million people on waiting lists but little information for patients on their respective waits, when they can expect treatment and where. I know that the delay to treatment has been picked up by patients because I have a steady flow of letters from patients telling me how pleased they were to have had their procedure or diagnostic testing quickly despite the backlog.
 
The NHS has benefitted greatly from the overwhelming public support during the last year and they have been there to support us. We need to restore full access to them, and reasonable waiting times, as soon as we possibly can to repay this support.
 
This adds weight to my call for data to be made transparent and easily accessible across the health and care system. Not only does it help to inform patients, it is a powerful instrument in its own right, as Steve Johnson eloquently highlights in a podcast – but we have to act now.There is no doubt that long COVID-19 will present a unique set of challenges to our health and care system. A significant impact on community care services is inevitable with disruption to other pathways, and disproportionate impact on the most vulnerable in society.