EBMT Project 2020 Clinical Outcomes Group
As reported before (click HERE to read the news item), one of the outcomes of the EBMT Project 2020 is the development of a fair and achievable survival outcomes benchmarking system, for which a Clinical Outcomes Group was formed. The Group has made good progress on the main principles and developments which were presented in a Special Session entitled “Transplant survival outcomes: achieving fair and acceptable benchmarking for the EBMT community” during the EBMT Annual Meeting in Frankfurt (click HERE to read the summary of this session).
In this article, the Group sums up the ongoing developments and what needs to be done before the model can be implemented across EBMT and JACIE, and also how it can be sustained in the long term (i.e. ‘second base’ and beyond).
Ongoing developments
- An EBMT Position Paper will be completed soon summarising the development process, including appraisal of existing national benchmarking systems and the ‘first base’ statistical model, along with the direction of travel on benchmarking within EBMT and how it will ultimately dovetail into the operations of the MACRO database via the mandatory core data set.
- In addition, a technical paper on the statistical model is planned from LUMC.
- Delivery of a phase one data reporting performance benchmark report to all EBMT member principal investigators. Members will be able to see position of their centre compared to all other EBMT centres for completeness of follow up.
- Developing arrangements for centre principal investigators to discuss their reports, provide feedback and receive guidance on their interpretation.
- Further validation of the model relating to DRI in autologous HSCT, and also further finer detail relating to histocompatibility and other risk stratification factors is ongoing.
- When sustainable oversight arrangements for governance have been resourced and established, 1-year survival outcome performance indicators will be made available to EBMT Principal Investigators to be potentially used by centres as part of the JACIE accreditation process.
- Integration of the benchmarking process with the MACRO Registry via the mandatory core dataset will improve completeness of data reporting and form the basis for ongoing development and sustainability of the system as an integral part of the EBMT Registry available to all member centres.
We know that there will be further challenges along the way. Inevitably there will be centres that will have some below average results and may require explanations. There will also be some high performing centres and we hope that the EBMT community can learn from them. The system will benefit from feedback. This is ‘work in progress’. However, in line with the modern direction of healthcare and its ‘consumers’, the EBMT community is now actively taking responsibility for quality assuring patient outcomes in our specialised field. Ultimately, we hope all of this will be to the benefit of ourselves as professionals, and, most importantly for patients and their families.
John Snowden, Chair of Clinical Outcomes Group, Chair JACIE, and EBMT Board/Scientific Council member with Portfolio of Registry (Sheffield, UK)
Nigel Brook, 2020 Project Manager, EBMT Central Registry Office, London, UK
Eoin McGrath, JACIE Operations Manager, EBMT Executive Office, Barcelona, UK
Other Clinical Outcomes Group Members:
Erik van Zwet, Member, Member Statistical Committee, Holland
Hein Putter, Professor, Department of Medical Statistics and Bioinformatics, Holland
Ronald Brand, Prof.em. Good Research Data Management (GRDM), Biostatistician, Dep. of Biomedical Data Sciences, Section Advanced Data Management, Holland
Myriam Labopin, Chair of EBMT Statistical Committee, France
Carmen Ruiz de Elvira, Head of the EBMT Registry, London, UK
Kim Orchard Director, Chair of JACIE Accreditation Committee
Riccardo Saccardi, JACIE Medical Director, Italy
Rafael Duarte, EBMT Secretary, Spain
Alois Gratwohl, Physician, EBMT Honorary Member, Switzerland
Baldomero Helen, EBMT/WBMT Transplant Activity Survey office Swiss National Transplant Registry SBST, Switzerland
Doug Rizzo, Senior Scientific Director, CIBMTR (co-opted)
Steve Spellman, Scientific Director, CIBMTR (co-opted)
Elena Oldani, Data Management, Secretary and Italian National BMT Registry – GITMO, Italy
Francesca Bonifazi, Principal Investigator, Secretary and Italian National BMT Registry – GITMO, Italy
Francis Ayuk Ayuketang, Representative German Stem Cell Registry (DRST), University Hospital Eppendorf
Julia Perry, Head of BSBMT Data Registry, UK
Rachel Pearce, Statistician, BSBMT Data Registry, UK
Noël Milpied, Hématologie clinique et thérapie celllulaire, France
Yves Beguin, Chair of Belgian Transplant Registry, Belgium
Per Ljungman, Chair of the Registry Committee
Arnon Nagler, Former Chair of ALWP, Israel
Gillian Adams, Patient, Family & Donor Committee, UK
Hélène Antoine-Poirel, Médecin / Arts Expert, Fondation Registre du Cancer, Belgium