A paper from this work has been published in the Journal of the Royal Society of Medicine. You can read ‘Lessons from the pandemic for the future regulation of confidential patient information for research’ here.
Control of patient information in the COVID-19 era
The extension by the UK Government of measures for the lawful processing of confidential patient information (CPI) for COVID-19 purposes is likely to have been welcomed by researchers. Introduced early in the pandemic, and aimed at enabling faster access to high quality data for crucial COVID-19 research this is the third extension of the four control of patient information (COPI) notices.
This PHG Foundation report finds that the COPI notices have had significant positive impacts on genomic and medical research, in particular through streamlining access to confidential patient information for research purposes.
However, any future extension, or exception for COVID-19 purposes, should be clear about its scope, potential benefits and harms.
In Regulation and use of confidential patient information for genomic and medical research during and post COVID-19 we identify a set of ethical and legal considerations that need to be taken into account by policymakers.
We conclude that the success of future reforms to the use of CPI will rely on building trustworthiness through transparency and meaningful engagement.
