Lessons learnt for future research: This was a large multidisciplinary research team comprised of clinicians from diverse medical specialties and methodologists from different fields. It was able to function in a cohesive and collaborative manner to answer a research question of broad importance to patients from many disease areas. We were able to bring together the diverse expertise in a meaningful manner.
It was challenging to ensure that the outputs from each WP fed into the next WP. We had initially planned for the grant to be delivered in 2 years, but the requirement of interlinked WPs and the need to update the prognostic systematic review to ensure we were providing the best quality of evidence to guide patient care resulted in us needing additional 5 months to complete the research process. One of our data sources – the BSR biologic register – did not have sufficient quality data to define outcomes of interest in the study. We did not have a fallback option and therefore we are unable to reach elsewhere to access these data. Future researchers should assess the feasibility of data in all data sets before proceeding further.
Related work: Not applicable.
Real-world impact/potential impact: The results of this study have the potential to change the management of patients with inflammatory conditions treated with immune-suppressing drugs in the UK and globally. This is likely to result in an increase in the interval between monitoring blood tests in patients treated with immune-suppressing drugs included in the current study. The results of this study have been discussed and brought to the attention of Getting It Right First Time Clinical Pathology NHS England working group, Getting It Right First Time Rheumatology NHS England working group, and BSR disease-modifying anti-rheumatic drug monitoring guideline committee.
What difference has been made already? We have not been able to bring about any other change so far.
What longer-term impact might there be? We estimate there are approximately 2 million adults with inflammatory condition treated with immune-suppressing drugs in the UK currently undergoing 3-monthly monitoring blood tests. If the monitoring blood tests’ frequency was reduced to 6-monthly for most of them, it would result in 4 million fewer blood test appointments every year, resulting in a potential cost saving of up to 100 million per year for the NHS. This will also reduce the carbon footprint from fewer patient journeys, fewer phlebotomy tubes, and use of smaller number of chemical consumables to analyse the blood samples.
Collaborations/further funding/future work: The chief investigator of this NIHR HTA grant (AA) has partnered with PRIMIS to apply to the University of Nottingham Impact Accelerator Award funded by the Medical Research Council. This is to develop the risk calculators into software applications that can automatically run-in real-world GP practices to explore if the data required to ascertain risk scores are available in the real world. If it is feasible to accurately ascertain risks, then at the next step we will assess user feedback in a larger mixed-method study before developing an application that can be integrated into GP electronic health record systems to compute risks of toxicity from these treatments.