As I sat down to write about data and Think Kidneys a headline flashed up. ‘Boots, Tesco and Superdrug to get access to NHS Medical Records’ The public concerns around how health data are handled remain topical and for many, a cause for concern.
So what was this story about? It was about personal health data being transmitted from one health professional to another, in this case the GP practice and a qualified pharmacist, to improve people’s access to their prescribed medication. NHS England responded this was about using the Summary Care Record, agreed with the patient, to improve direct care. But it highlights the worries people have about data and we certainly need to make the case that the linkage of health data is of benefit to individual patients.
So let us widen our view. The Patient View (PV) team and the UK Renal Registry recently completed a pilot on using PV to improve medicines’ safety and management. Patients could opt in to linking their Renal Unit Medication data and their GP records to compare and check. In only 1 in 5 cases were the records accurate and matching. In 1 in 6 cases there were potentially harmful errors. Important as the particular example is, it demonstrates the need to link data for the benefit of individuals.
The bigger challenge is how we improve health care systems. This lies at the heart of the Think Kidneys programme. All of you are aware, I am sure, of the NHS England Safety alert on acute kidney injury and the way it has supported the standardisation of biochemically determined AKI in laboratories across England. Perhaps fewer of you know that it is a requirement of the safety alert to return data to the UK Renal Registry. But it is that data that will provide the bedrock of improvement.
This is about the value of ‘big data’ to provide us with insights to improve care on both a population basis and on an individual basis. It is about how we use routine health care data to provide bigger insights. Deeny and Steventon talked about the types of routine data (clinical, patient, administrative) and how we need to develop the systems to interpret ‘this world of shadows’ and motivate the desire to change (Deeny SR, et al. BMJ Qual Saf 2015). It also relies on the responsible use of data – to use data in this way requires the appropriate permissions. For the UK Renal Registry and AKI that meant applying for and being granted Section 251 approvals. So how is this going to work?
First, the data returns on AKI test results will allow a Master Patient Index (MPI) to be established. That in its own right will be an invaluable resource, telling us when and where people sustain AKI. It will allow us to look for variation in care and offer that information in anonymised form to communities who want to measure improvement, be that an individual organisation, a strategic clinical network or a national project. It will be a support for commissioners and allow us to understand how effective commissioning levers are, for example the national CQUIN for AKI. But can we get added value?
To really get the value from this work we need to be able to link data from different sources to create a registry of AKI for England (and indeed the devolved nations if they so wish). Just as the linkage between RPV and GP systems allowed individuals to improve their care, so linkage across systems will allow us to improve guidance and systems to reduce the harm of AKI. Think Kidneys has published a position statement on Sick Day Guidance and a document on ‘Communities at risk’. Linking data from the MPI with GP systems would allow us to evaluate risk in a way that has never been done before, to understand the risks and benefits of medication for AKI and to test the effectiveness of a Sick Day Rule strategy. All done without establishing another way of collecting data but purely linking data from available sources to create a bigger picture. So where are we?
There is still work to be done to establish the MPI. Currently, as I write, 25% of pathology laboratories are returning data to the Registry – the latest update is here. I am extremely grateful for their efforts and for those planning to return data. The permissions are in place to link data sources and the Measurement workstream has worked on the required data and the analysis plan. But more needs to be done.
You and I need to advocate the benefit of collecting and linking data for improvement. We need to the make the case to professionals, patients and the public. We need these data to improve care and the NHS is the only healthcare system that can do this, in a structured, measured way and at speed. And speed is needed – thousands of lives every year can be saved by improving the management of acute kidney injury.
Richard Fluck
Richard is currently the Chair of Think Kidneys AKI Board and was NHS England’s National Clinical Director (Renal) until March 2016. He continues as Clinical Co-Chair for Specialised Internal Medicine and Consultant Nephrologist at Derby Hospitals NHS Foundation Trust.
Richard trained at Trinity Hall, Cambridge and the London Hospital Medical College, qualifying in 1985. His early training was in the East London area before he moved into research at St Bartholomew’s Hospital. Richard was appointed a British Heart Foundation Fellow to explore the link between cardiovascular disease, calcium signalling and abnormalities of calcium metabolism in chronic kidney disease. He returned to the Royal London Hospital as lecturer and honorary senior registrar in nephrology, before being appointed as a single handed nephrologist at Derby in 1996. In 2013 Richard was appointed National Clinical Director for Renal and has also chaired the Kidney Alliance as well as being President of the British Renal Society. Richard’s special interests are in chronic kidney disease, acute kidney injury, home dialysis therapies, reducing infection in dialysis patients and vascular access.
When he is not at work he looks at his running shoes or twiddles on his guitar.