It is with great regret and sadness that we have to inform you of the untimely passing of our friend and colleague Richard Driscoll. Richard passed away on the morning of Saturday 21st October, following a cardiac arrest. He is survived by his wife Aviva, sons Adam, Sam and Jonny, and by three grandchildren. They and his wider family, friends and colleagues have our sincerest condolences.
Many people associated with the IBD Registry will have met or worked with Richard in his role as Development Lead. He was a significant driving force behind the Registry’s set up, and worked tirelessly to overcome the challenges involved, with grace and determination.
Richard was a hugely engaging, warm and insightful individual. His impact on patients with Inflammatory Bowel Disease has been enormous, and will continue to be felt for years to come. Most of all, Richard was a kind and generous person, who placed his family, community, friends and colleagues before anything. I’m sure many of us have very positive memories of any interaction with Richard, be it large or small. He will be sorely missed.
Data and reporting
This month the IBD Registry achieved two participation milestones: we moved past 30,000 patient records (up to 31,614) and now have 51 sites submitting data to the Registry.
Quarterly reports and data submission
In an important milestone for the IBD Registry, teams received their first quarterly reports last week. All teams that had uploaded any data received a summary of the information they had submitted at the end of June 2017. Sites that are also taking part in the biologics audit received an additional summary report showing their achievement of the biologics KPIs. At a later date, an additional report will show Registry data linked with HES data. We’re keen for all of the reports to be useful to you, so please send us any feedback here.
The next data submission deadline is 29th December. If you need any help at all in preparing for this, or if you have not yet registered with NHS Digital, please email [email protected].
Resources for sites
Field Support Programme
IBD Registry’s Industry Working Group (IWG) is launching a field support initiative: field based personnel from Dr Falk Pharma, Janssen, Pharmacosmos, Takeda and Tillotts will supplement the Registry team by visiting IBD leads on their behalf.
Field-based personnel trained by the IBD Registry team will visit hospitals in a non-promotional capacity to offer advice and support. Any information collected during these meetings will be held by the Registry and not by the pharmaceutical companies. Sites will be notified by email by mid-November and can easily opt out if they wish to do so.
The Field Support Programme is just one example of industry support for the Registry, and you can read more about the Industry Working Group in this month’s edition of Pharma Times.
Caldicott Guardian opportunity
The IBD Registry has a vacancy for a Caldicott Guardian to support all Information Governance aspects of the project. Please contact [email protected] for more information.
PMS user group
In collaboration with CIMS (Chameleon Information Management Services Ltd.) the IBD Registry launched the InfoFlex Patient Management System (PMS) User Group earlier this month. The purpose of the user group is to develop and improve the functionality, usability and aesthetic design of the InfoFlex PMS.
During the initial meeting, the user group members discussed feedback provided by PMS users, and began a process to facilitate improvements to the PMS. The group members plan to meet each quarter, so if you have any questions or ideas to put to the group, please email your suggestions to [email protected].
Northampton General data entry grant case study
The team at Northampton General have successfully used the additional hours funded by their data entry grant to backfill 92 biologics patients. The IBD clinical nurse specialists will have a session each week dedicated to audit and research from 2018. The team have also obtained additional administrative support to enter patient demographic data. The team are convinced that as they gather more demographic and biologic data, it will enable them to review and improve their service and participate more easily in research studies.
Now that Registry data is being entered, the team anticipate being in a position to undertake more rigorous colonoscopy surveillance over the next 12 months, addressing an important governance issue.
Do you still want to be on this mailing list?
On the 25th May 2018, the General Data Protection Regulation (GDPR) will bring in new data privacy measures. To be compliant, we’ll need your written consent to hold your email address. If you want to receive future communications from the IBD Registry team, please email [email protected] stating that we have your permission to store your data. If you do not respond before the 25th May 2018 we’ll take you off our contact database. Please note, this is just for the monthly newsletter.
With our thanks for your continued contribution to the IBD Registry,
Dr Stuart Bloom, IBD Registry Chair Dr Fraser Cummings, IBD Registry Clinical Lead