Control of patient information in the COVID-19 era

This project is now closed

Report: Regulation and use of confidential patient information for genomic and medical research during and post COVID-19

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.

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With funding from The National Institute for Health Research Policy Research Programme we examined the impact of allowing researchers access to confidential patient data on genomic research.

Why does this matter?

In England and Wales, conversations between doctors and their patients recorded in health records are treated as confidential, meaning that they cannot be shared with other people without the agreement of the patient. There are exceptions to this rule but researchers, in normal circumstances, are required to justify their need for confidential information.

In March 2020, the UK government decided to allow confidential patient data to be used for COVID research without the normal limits in place, so that scientists and doctors could use patient data to help them understand who was getting ill, and to develop better treatments and policies that could improve public health.

Some people think that confidential patient information should continue to be used for health research without the usual safeguards being in place, even after the COVID pandemic is over, with information being made available to researchers and commercial companies, as long as it is useful.

Others want to go back to the system in place before the pandemic, where patients are asked to decide how their information can be used or researchers required to explain why this is difficult or impossible.

Our aim

We examined a range of COVID-19 research as well as related law and regulations. We also interviewed key stakeholders and considered results from a public focus group, exploring what people think of these new rules, whether they should be restricted to COVID-19 only or all health research and whether they should continue after the pandemic is over.

Our aim was to provide a guide for policy makers as to the potential value and acceptability of using otherwise confidential medical information for genomic research should become routine practice.

From our live panel discussion, it’s clear that COPI notices are an important area for continued scrutiny, both from a researcher perspective, but also an ethical and public point of view.

View the panel webinar here.