What you need to know about the draft NHS data strategy

Adam from our policy team looks at the draft NHS data strategy which was recently published by the Department of Health. He explains what is in the strategy and how the better use of NHS data could help transform the care of people with asthma.

Throughout the COVID-19 pandemic, the collection and use of data has become one of the most powerful tools in helping inform the day-to-day responses of all governments in the UK. Data has helped identify many of you who needed to shield, decide when greater lockdown restrictions were needed, and powered vital research in the discovery of new treatments, like the coronavirus vaccines. 

The successful use of data in making these big decisions has opened a broader debate about how the NHS can improve the care they provide us. The Department of Health and Social Care recently published a draft data strategy, setting out how NHS England can make better use of data. 

What’s in the draft data strategy 

We know that many people get frustrated at having to repeat their story to healthcare professionals over and over again because they can’t access your care record or it’s not up to date. This will change and by the end of the year, all healthcare professionals working across the NHS – from your local area in GP practices, hospitals, pharmacies, and social care settings will be able to access this information in one shared care record.  

By 2024, this access will be extended to all healthcare professionals working in the NHS across England. They will be able to see information such as your medical history, test results and what medicines you have been prescribed by your GP. This would mean if you fall ill or need medical help anywhere in the country, the local staff will know about your history. 

NHS England are also working with colleagues in the nations to see how care records can be shared for those receiving care across the borders. The NHS in Wales, Scotland, and Northern Ireland are working on their own programmes for shared care records. 

By next year, you will be able to access your own shared care record, see if it is correct and up to date, and make contributions to it such as providing further information on your health through the NHS App. We know from our work on COVID-19 Vaccinations that many people have medical records which are inaccurate or not up to date, so being able to correct your own record would be a big step forward. 

We are involved in discussions with NHS England about what people with asthma would like to see in their shared care record which could include your asthma action plan . 

The NHS will also have to be more transparent about how they protect and use your personal data. You will be able to see what research your data has informed, and who has had access to your data.  

We know that people with asthma are supportive of their health data being shared with the right safeguards to improve NHS services. We are also pleased to see that these proposals will help researchers to access the data they need so they can develop better products and treatments that work for people with asthma. 

Next steps 

Since the National Review of Asthma Deaths we have been campaigning for better data sharing across the NHS so healthcare services are more joined-up, and people most at risk of having a potentially life-threatening asthma attack can be better identified.  

The draft data strategy is a step in the right direction and the better use of NHS data will help transform the care of people with asthma.

Have your say in the draft data strategy 

The NHS are keen to hear from you about what you think of their draft data strategy, and what can be done to improve it. Have your say in how the NHS can better use data to improve your care by completing the data strategy survey. 

A final version of the data strategy will be published in the Autumn. 

Asthma research is severely underfunded

DID YOU KNOW: Research into respiratory diseases like asthma accounts for just 2% of all the medical research funding in the UK.

This underfunding is exactly why we launched the 2021 Research Appeal...