NorthWest Biotherapeutics Inc (NWBO)

[hyperopia]

Interesting that Dr Ashkan will be at ASCO if true. As most know, he’s not only a lead investigator in the trial, but he’s also been treating patients for compassionate use under the UK “Specials” programme. I believe some manufacturing improvements have been implemented outside of the trial in the UK, so this data could be extremely beneficial in confirming a real-world clinical benefit of DCVax. I believe this data will be used to support a marketing application, but would he be able to present some Real World Data at ASCO if patients consented?

Kings College has participated in NHS research using digital health records:

Health data research of Kings College Hospital digital health records

Data collection arrangements
The King’s College Hospital (KCH) NHS Foundation Trust's electronic patient records system holds >19 years of detailed information which can be used for research for patient benefit and to understand how services should be provided. Using a new open-source information retrieval toolkit, patient records can be searched and extracted in a de-identified manner. Data from many internal sources is pooled (including: patient appointment systems; pathology results; electronic patient health records; imaging and diagnostics; letters and scanned documents) and mirrors the live records system at a 15 minute delay with a pseudonymisation pipeline generating a parallel de-identified redacted version of individual patient records to preserve confidentiality. This de-identified version will form the King's Electronic Records Research Interface (KERRI) system for research for patient benefit.

A Trust-wide opt-out procedure will be implemented whereby patients or their carers can request to opt-out of the inclusion of their de-identified data in the KERRI database, so that their data is not added to the index. This local opt-out will be stored locally and will align with the National Data Opt-Out Programme.

Research programme
The primary purpose of KERRI will be to investigate questions of relevance to the health and experiences of KCH patients, carers and service users. This will include 'Big Data' research questions that can only be answered by forming linkages across datasets of large populations (>100,000). Example of research projects would be to identify adverse drug reactions through pattern recognition in text, forecast infectious disease epidemics like influenza outbreaks, identify new risk factors for good or bad outcomes in any disease area. The KERRI database will be governed by the a research oversight committee which includes a lay Chair, who represents patients and carers. The other members of the committee will include major King's Health Partners Clinical Academic Groups and Institutes (Cicely Saunders in Palliative Care, Neurosciences, Cardiovascular, Biomedical Research Centre for Bioinformatics) which has committed to 2 years of seed funding, indicating the strategic importance this provides to the research community. The KERRI system is modelled on previous successful systems in Kings Health Partners which has successfully performing similar de-identified patient research on electronic health records for >8years with researcher and patient engagement active.

https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/health-data-research-of-kings-college-hospital-digital-health-records/