Ensuring patient experience leads research into Long COVID
Krisnah Poinasamy, Head of Research and Innovation Advocacy at BLF, shares how we're utilising patient experience and insights, to help researchers working on the government-funded national flagship Long COVID programme (PHOSP-COVID).
2020 has been a year of change, for research and innovation as well as many others. As one would expect, many of our researchers are utilising their respiratory expertise in a number of research programmes into COVID-19.
We're proud to say that some of our researchers are leading a £8.4m government-funded national flagship research programme (PHOSP-COVID) which aims to recruit 10,000 volunteers over 10 months (it started in July 2020).
Ensuring this is a patient-centred study
This is a pivotal study. The programme is connected to virtually every single other UK population study and dataset so all the data will be linked and connected, including health records. Making sure that the research is based on the needs of sufferers (and not just the researchers’ interests) is vital so that new treatments and services can be built around their needs.
As a key partner and co-applicant, we have been funded to make sure that the programme is ‘patient-centred’ and to ensure the findings are used to directly improve the lives of sufferers. This could be one of the most important and influential studies of the pandemic, so we need to use our involvement to maximise the impact for people with respiratory diseases.
That's why in December we reached out to people who had experience ongoing breathlessness after recovering from their initial infection. These insights were then fed into priorities for research specifically on breathlessness, which will aim to improve our understanding of the causes and treatments for Long COVID breathlessness.
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