Almost nine in ten people with asthma in England support data sharing to improve care and research

Asthma UK’s new report suggests the willingness of people with asthma to share their data, coupled with digital healthcare innovation heralds a ‘golden opportunity’ for asthma care - and could blaze the trail for other illnesses.

FOR IMMEDIATE RELEASE: Friday 25 May

Almost nine in ten people with asthma in England (88%) are supportive of sharing their data to improve NHS services for asthma1, according to a new report out today from Asthma UK. Furthermore, 83% are happy for their data to be used to further asthma research.2

In its report, Data Sharing and Technology: Exploring the attitudes of people with asthma, released today [Friday 25 May], Asthma UK suggests that this willingness for people to share data, coupled with strides in asthma healthcare technology could herald a ‘golden opportunity’ for improving asthma care.

Data could also drive research to give a better understanding of asthma. leading to improved treatments and services.

For example, the health data of people with asthma could be used to identify which patients are at a high risk of having an asthma attack to help healthcare professionals prioritise their resources or it could be used to inform the development of new services and technology to help people better manage their condition.

With such a huge and diverse asthma population - 5.4million people in the UK have the condition -  if advancements in data sharing and digital technology help people with asthma, the principles could then be applied to help people with other conditions.

The findings show that people with asthma are supportive of their data being used for medical research (83%). This is higher than the general public’s willingness to share their anonymised medical records for research (77%)3.Asthma UK says there are a number of potential reasons for this.

It could be that people with asthma see the potential of technology in improving their health. For example, over half of people with asthma are already using some form of technology in their healthcare, and 88% said they would be happy to use a smart inhaler,4 a device linked to a smartphone that can detect someone’s inhaler use in real-time, if it was available on the NHS.

Asthma UK also suggests that people with asthma may be more aware of how data sharing can save lives due to high-profile media stories such as the inquest of Tamara Mills, a 13-year-old who died from an asthma attack. She was seen by medical professionals 47 times in different parts of the NHS and each asthma attack was considered as a unique incident. The coroner said more should have been done to co-ordinate the care of complex cases between GPs and hospital doctors. If her records had been linked she may have been treated differently and her death prevented.5

Asthma UK says the willingness of patients to share their data, coupled with their positivity about using asthma technology products such as smart inhalers, could mark a ‘golden opportunity’ for asthma care and research.

New technologies offer hope to the 5.4million people in the UK with the condition, which leaves people gasping for breath, can affect people’s health, work and relationships – and kills three people every day. Tragically, two of these three deaths are preventable.

The charity is calling for the NHS to implement new health technologies that will benefit people with asthma and deliver more personalised care. It is also urging the NHS to ensure data is used and shared to drive improvements in services and advancements in asthma research. It is calling for a continued and informed public dialogue about the benefits of data sharing.

Kay Boycott, Chief Executive at Asthma UK, says:

It is really encouraging that the majority of people with asthma understand how sharing their data can help to improve their own care, NHS services and further research.

“If used with appropriate safeguards, data when coupled with advances in health technology, presents an exciting opportunity for improved asthma research and care, offering the hope of better treatment or a cure for the 5.4million people in the UK with the condition.

 “There have been strides to better support people with asthma, such as smart inhalers, apps and devices powered by AI, but they can only be effective if the data from them is understood by a patient’s healthcare professional – or is anonymised and used to assess general asthma trends.

“We are urging the NHS to implement new health technologies that will benefit people with asthma and deliver more personalised care. We are also calling for the NHS to ensure data is used and shared to drive improvements in services and advancements in asthma research, and we want a continued and informed public dialogue about the benefits of data sharing.”

Daniel Russell, 42, a technician from Southampton has had asthma, triggered by pollen and cold air, since his teens. He says: 

“I’ve had asthma for most of my life and it’s truly terrifying when you can’t breathe. There have been periods where I’ve had constant chest infections which have triggered asthma attacks and it made my life a misery. I’m involved in various asthma research projects and I want to share my data because without it, research isn’t going anywhere. After all, the inhaler took years to develop and now it’s a lifesaver.

 “It’s interesting that more people with asthma are keen to share their data. I think it’s because asthma is neglected, and not as high profile as other conditions, so we know that we need to do even more to help support research to stop asthma attacks and find a cure for asthma.”

For more information on the attitudes of people with asthma to data sharing, and its potential to transform NHS care, visit asthma.org.uk/datareport

Notes to editors

To request a copy of the report or for media queries, please contact:

Catherine Jones, Head of Media, Asthma UK

0207 786 4933 (out of hours 07951 721393)

cjones@asthma.org.uk

Notes to Editors:

We have a digital media centre with information for journalists including our press releases and statements, case studies, expert spokespeople, our celebrity supporters, infographics, videos and stats. Visit www.asthma.org.uk/media

Data sharing and Technology report – key findings

  • 83% (1948 of 2356) of respondents were comfortable with their health data being used for research to develop new asthma treatments
  • 88% of respondents (2672 of 3054) stated that they would be either ‘very happy’ or ‘happy’ to use a smart inhaler in their asthma care
  • 90% (2737 of 3054) would share health data collected from a smartphone app for research
  • 90% (2742 of 3054) would share health data collected from their smart inhaler data with researchers
  • 3054 people completed our survey, which ran online in February and March 2018.

 

  1. Data Sharing and Technology: Exploring the attitudes of people with asthma.
  2. Ibid
  3. Ibid
  4. ‘77%’ figure for general population willing to share their anonymised health data is from https://wellcome.ac.uk/sites/default/files/monitor-wave3-full-wellcome-apr16.pdf - Wellcome Trust, Ipsos Mori The Wellcome Trust Monitor Wave 3, 2016.
  5.  Understanding Patient Data, A Tragic Case of Data Mismanagement, 2017, https://understandingpatientdata/case-study/tragic-case-data-mismanagement. Also: Teenagers asthma should not have been a death sentence – coroner points finger at health system in Tamara Mills inquest hearing, Shields Gazette, 16 0ctober 2015, https://www.shieldsgazette.com/news/health/teenager-s-asthma-should-not-have-been-death-sentence-coroner-points-finger-at-health-system-in-tamara-mills-inquest-ruling-1-7518112