UK Parliament / Open data

Health and Care Bill

My Lords, I have my name on this amendment. I will not repeat all the points made by other people so far, but I point out that using the words “shall” or “must” avoids any argument over threshold. The problem with having a word that is not definitive is that there would be arguments over what would and would not have to be declared.

To put a slightly positive note on the whole situation, I say from clinical experience that patients want to go into trials and to contribute to the level of knowledge. Very often, people who are seriously ill will say, “I know that I won’t benefit from it, but I hope that other people will by me going into this trial”. But they want to know that the trial is properly conducted, that everything is open, that nobody is profiteering from their generosity and that they are genuinely contributing to the body of knowledge across the country. When people who I know socially contact me because they have been given a potentially devastating diagnosis and have been referred to somebody, the question is always, “Are they the best in the field?”, which is often followed up with, “Are they doing research in the field?” and “Are they completely up to date?” So often, when people realise that they are deteriorating, they will ask whether there is a trial that they can be entered into.

This goes much further than just being sunlight. This amendment would support future endeavours and innovation in the country and would encourage people to enter into studies.

About this proceeding contribution

Reference

818 c1657 

Session

2021-22

Chamber / Committee

House of Lords chamber
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