The aforementioned survey is after the blog post if you can’t stand the thought of reading this intro…..
I somehow think that ‘data’ will be a significant feature of my life over the next few weeks. Next week I am a panellist at the NIHR/ABPI conference ‘360 of Health Data: Harnessing Big Data for Better Health’ (places still available I understand).
Part exhibition (with some excellent interactive displays by teams of pathologists) and part lecture (with a quite brilliant presentation by Dr Bridget Wilkins (Consultant Histopathologist and NCRI Pathology Lead for NHS Engagement in Biobanking introducing us to the issues around tissue donation), we concluded the evening with a debate and electronic voting on the idea of a swipe card that could be used by patients, doctors and researchers for donating, storing and accessing tissue.
The debate was expertly moderated by journalist and broadcaster Vivienne Parry (website here including access to film about 50 years of cancer ‘The Enemy Within)and the opinion of the room was broadly in favour of the idea.
The debate was of a high standard. I was struck by the implicit feel within the room that the debate about tissue/data and its use is hampered by second-guessing on both sides – by researchers and ‘privacy’ advocates. Stuck in the middle are patients and the public.
They are broadly in favour of the idea – as every survey shows – but understandably want better information and potentially more control over application. They are also somewhat befuddled by the very structured and paternalistic approach of doctors in particular to an area to an extent they would never stand in another area of their lives. Understanding is not helped by the general over-hyping of anything to do with genomics and stratified medicine or the bidding war for the public’s attention (if not tissue) caused by initiatives such as the Personal Genome Project UK.
My favourite model for a biobank is one from Germany I saw presented in Stockholm a few months ago. Called Patients Tumour Bank for Hope (PATH), it is run by cancer patients and survivors, donors get regular reports about the use of their tissue and can remove it at any time. No one ever has. Here’s the link – it’s in German.
Anyway, this is all a long-winded way of pointing you to the Independent Cancer Patient’s Voice survey developed with trainee pathologist to find out the public, patient and professional view about tissue donation for research. The survey can be founded as a downloadable document on their home page here.