What conditions are being considered for this research? Were patients, charities or doctors involved in selecting which conditions are being considered?
This research is reviewing a very wide range of factors, including dozens of demographic, medical, prescription and lifestyle ‘data points’. The medical conditions considered are diverse in terms of the parts of the body they affect, how rare they are, their ‘type’ (cancer, degenerative, inflammatory, genetic) and the age groups they affect. These have been identified by a team of medical, epidemiological, statistical and public health experts, based on evidence that has emerged during the pandemic and knowledge from other conditions that may be helpful.
The voices of patients, advocacy groups, charities and other expert groups are incredibly important, as are their lived experiences. Due to time constraints and the confidential nature of the project until now, we have not yet been able to consult with a wide range of patient groups or charities. As such, we are starting a consultation process with a range of patient groups and charities following the publication of the study protocol.
We are also liaising with clinical experts and other leaders across the spectrum of considered conditions or social groups to engage with them regarding how to be inclusive, scientifically robust and fair when considering which factors to consider for the research. This will help to build a tool that is meaningful, deployable and relevant to the population. QResearch has had patient representation on its advisory group for many years.