Understanding data: Improving health outcomes

Measure this, record that, track those changes: sometimes it can seem as though our lives are ruled by data. But as everyone in the healthcare sector knows, those individual data points can make a measurable difference to patient diagnosis and outcomes. That’s why digitising patient records is so important, enabling us to quickly share findings and to look back at previous records. That blip in the record six months ago or longer might just help to pinpoint the progress of a disease.

With data in mind, it was interesting to see three key reports hit the headlines in recent weeks. The first, published on 23rd May, set out statutory guidance for the protection of patient data in England. Arising from the transfer of patient data from NHS Digital to NHS England, the regulations have been drawn up to “ensure that NHS England acts as a safe and effective guardian of people’s data collected from NHS and adult social care services.” Key to this safeguarding is the protection of any data which can either identify an individual or, if de-identified could be re-identified or traced back to an individual.

The importance of anonymising data also runs through the Health Survey for England. This survey aims to identify health and lifestyle trends by interviewing individuals chosen at random across the country followed, in some cases, by a visit from a biomedical fieldworker. Due to low levels of participation the current 2022 survey has been extended with interviews expected to continue until summer 2023 with follow-up visits continuing into the autumn.

In the past this survey has identified a lack of public awareness of key health areas such as high blood pressure and kidney disease. This has resulted in a change of approach in respect of these conditions by raising awareness and increasing testing. It also helps to track changes in health and lifestyles as well as enabling more targeted planning of health and social services.

Having data is one thing, being able to optimise its interpretation is quite another. That’s why a new review into the UK’s health data could prove to be so significant. Launched on 31st May 2023, the review: ‘Uniting Health Data in the UK’, aims to map and assess the flows of health-relevant data across the UK.

Led by Professor Cathie Sudlow OBE, Chief Scientist at Health Data Research UK (HDR UK), the independent review aims to map the health-relevant data landscape across the UK as well as identifying barriers to its use. It will also recommend potential solutions for better data management. Along the way it will consult with a wide range of organisations and individuals with the intention in particular of actively involving patient groups.

Commenting on the review Professor Sudlow said: ““This is an exciting time to be involved in health data, but we are still a long way from maximising its potential for benefiting patient care and the public’s health. This review provides an opportunity to chart the course for a new era in health data, mapping existing strengths and identifying ways that our approaches could be improved.”