HHTU News Roundup
MABEL Investigator Meeting
The Mabel (Morphine and BrEathLessness) Study reached some key milestones in June with the data team achieving hard lock prior to the Investigator Meeting which took place on Tuesday 25th June 2024. The study team which included individuals form all over the United Kingdom attended in person at the University of Hull and online to participate in the event which was led by Professor Miriam Johnson and Professor Marie Fallon.
At the event presentations of the study’s preliminary findings were facilitated by the trials Statisticians, Health Econometricians and Sub Study lead. They were: Sharon Tuck (Unblinded Statistician), Catriona Kerrie (Trial Statistician), Marek Atter (Health Economist), Professor Peter Hall (Trial Lead Health Economist) and Dr Mark Pearson (Sub-study lead). After each presentation there were opportunities for discussion which were very valuable.
Details of the results/findings of this study will be made available once the publications are released.
On behalf of the Mabel Study team, we would like to thank everyone for their contributions.
HHTU Director presents at patient meeting
Our Director Judith Cohen travelled to Bologna in Italy this month for the 2nd REMEDi4ALL Multi-Stakeholder Meeting. REMEDi4ALL is the wider programme our study MOI-A is funded by and its focus is the repurposing of medicines for other use. This June meeting was about Patient Centricity on Osteogenesis Imperfecta (OI) Research. Judith was able to present the current challenges the project is facing and get feedback from the patient and public involvement (PPI) members attending. Judith stated conversations with PPI members were extremely helpful in understanding their view on the issues. She recognised the need to continue engaging with the PPI to make sure they continue to be happy with any new proposals going forward in the study.
PPI is so important to research as it ensures we focus on what really matters to the research population for each study. Find more about PPI here.
Annual Toolkit Submitted
Each year the HHTU must complete the NHS England Data Security and Protection Toolkit. The DSPT is an online self-assessment tool that enables organisations to measure and publish their performance against the National Data Guardian’s ten data security standards. Our Toolkit covers both the HHTU and the Data Safe Haven.
We are required to do this so that we are able to hold NHS data as it assures we are practising good data security and that personal information is handled correctly. You can find our DSPT history here: https://www.dsptoolkit.nhs.uk/OrganisationSearch/EE133824-HHTU.