Erinna reports on use MY data’s workshop “Patient data – balancing access and protection: All talk and no access?”. The workshop focused on identifying issues preventing timely and appropriate access to patient data – and brainstorming ways to address those impediments.
Public support for transparency in biobanking The HTA and HRA have released a report, Consent to use human tissue and linked health data in research. This report details results from a series of workshops where the public shared their views on the topic. Although intended for the HTA and HRA, it provides examples of how to[…]
New HTA codes of practice In April the Human Tissue Authority (HTA) published updated Codes of practice. This guest blog by Regulation Manager, Fiona Maleady-Crowe explains what this means for Biobanks. What are the Codes of Practice? The HTA’s Codes of Practice provide practical guidance on the human tissue legislation and set out the HTA’s[…]
The immortal life of Henrietta Lacks Today, samples donated for medical research are anonymised so that any work performed on them cannot be traced back to the donor. But donation for research has not always worked like this. In 1951, tumour cells from a patient in the USA were grown and sent all over the[…]
The Health Research Authority (HRA) have published new guidance on taking a proportionate approach to consent, particularly in reference to clinical trials.
Putting Patients First UKCRC TDCC attended Patients First on 28th November, 2016 – an event co-hosted by ABPI and AMRC. Here we outline the day’s events and what we can learn from the topics discussed. The event was opened by Aisling Burnand, AMRC, with an inspiring quote by Mary Mead, ‘Never doubt that a small[…]
Proposed changes to data security and consent in the healthcare system In September 2015, the Secretary of State for Health commissioned an intensive review of how personal data is used within the healthcare system. This called for recommendations to be made on improving data security and developing a new, clear opt-out and consent model for[…]