Data sharing

Across the health system, information is gathered about patients and kept in records but as our care is split between primary and secondary care, this data is not currently joined up.

Linking health records across the system is complex, with IT infrastructure and data security important issues to address. Asthma UK believes that this is a vital policy area and we are working to ensure the patient voice is heard in policy developments. 

What is the issue?

For people with complex and multiple conditions, including asthma, unlinked data means that when they go to accident and emergency the healthcare professionals who help them cannot see the information about their care in primary care – e.g. data collected at GP surgeries. It also means that GPs don’t automatically know if their patient has attended A&E because of their asthma. This means that patients do not always get good follow up care to make sure that their asthma is under control. The risk is that deterioration in symptoms or care may be overlooked.

What are we proposing?

Asthma UK believes that by joining up people’s care records, in a secure way, there will be a better outcome for people with asthma. This would mean that your GP would be alerted if you went to A&E, which currently does not always happen. It would also mean that pharmacies could see if you need to have an asthma review to check your medication. The sharing of data between healthcare professionals is essential to provide the best possible coordinated and efficient care for the patient, but we recognise that data security concerns need to be addressed.

We also support the use of anonymised patient data for research. The availability of person-level data helps researchers better understand diseases and develop treatments to save lives. It is used in the research we fund to try and cure asthma. We support work to promote and engage with the public on the use of their data in research.

What is Asthma UK doing about it?

We know how crucial privacy and data security are so we are meeting with key decision makers in government to ensure that any changes make sure records are kept securely and are not made available to people who do not need to access to them. We are advocating for the appropriate data security measures and safeguards to be in place before any data sharing changes are implemented. We also firmly believe that people should be able to opt out if they want to.

We are closely monitoring developments in this policy area. We are working with the National Information Board and National Data Guardian to ensure that the voices of people with asthma and other long term conditions are represented. We have responded to several government consultations on data policy (such as the consultation on the role of the National Data Guardian), and have worked with our colleagues in the Richmond Group and the Association of Medical Research Charities (AMRC) to represent patients and influence decision makers.

What can you do about it?

We would love to hear from you if you if you want to discuss this issue. Contact us as evidence@asthma.org.uk.

To find out more about asthma data, visit our data portal.