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Welcome to HRA Latest, I’m pleased to be able to share the latest updates for all those working or involved in health and social care research.
This month we announced that from 2022, clinical trials will be automatically registered to guarantee a full picture of research taking place in the UK, thanks to our world-first partnership with ISRCTN. Trial registration is the first step to ensuring research transparency, and this new partnership will help make it easy for researchers to fulfil their transparency responsibilities.
Also in the world of research transparency, next week we’ll hold our first Make it Public conference, on 3 and 4 November. We’ll be discussing the importance of research transparency, as well as showcasing good practice and the impact of making research more visible.
As always, for regular updates and the latest news, you can follow us on Twitter @HRA_Latest.
Karen Williams, Deputy Chief Executive and Director of Finance
New partnership guarantees full picture of UK clinical trials
The HRA has partnered with ISRCTN to make it easy for researchers to fulfil their transparency responsibilities. ISRCTN is a UK-based registry recognised by the World Health Organisation (WHO).
It’s a requirement that all clinical trials register with a WHO-recognised registry before the first participant is recruited to a study, but our recent audit shows that more than 10 per cent fail to do so. From 2022, the HRA will automatically register clinical trials with ISRCTN, taking the burden away from research sponsors and researchers.
This is just one part of a package of measures we are putting in place to improve research transparency. At the annual Make it Public conference, we will bring together partners to discuss how we move forward together to make sure trusted information from health and social care research studies is publicly available for the benefit of all. Register to join us at the conference.
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 Improving our review of research using AI and data-driven technologies
We want to improve the approvals process for people applying to start health and social care research involving AI or data driven technologies. To identify common issues with our existing approvals process, we conducted qualitative research, a literature review, and a series of workshops with patients; industry; clinicians; academics; other regulators and HRA staff and volunteers.
This work showed we need to help developers of AI and data driven technology get access to data quickly and to clarify which activities are research and what approval they require.
We already had projects underway looking at a coordinated review for medical devices and streamlining Confidentiality Advisory Group (CAG) review. We will build on these by running a pilot to test new ways of working for CAG, and two additional projects focussing on data holding structures and supporting developers to access data and get the right approvals.
Read more about our new projects and what we are doing to streamline the approvals process for people who are developing AI or data driven research.
HRA Community Insight Group
We have around 1,000 dedicated and committed people who give their time to support the work of the HRA. They make up our Research Ethics Committees (REC), Confidentiality Advisory Group (CAG) and are part of our Public Involvement Network (PIN). Their efforts support health and social care research and make an invaluable contribution both to our work and to research participants.
These people are key to the HRA’s achievements and we value the important work they do. We want them to feel part of the HRA community and enjoy working with us. To help support this we have created a new Community Insight Group, which is made up of members of different RECs, CAG and PIN.
The group meets regularly to share feedback on their experiences of working with the HRA and discuss ideas for how we can improve. We will also share information about what the group is discussing so the wider HRA community can contribute their thoughts and ideas. The ideas we discuss will inform how we work to improve the experience of being part of the HRA community.
In March 2021, we carried out a survey to better understand the experiences of REC, CAG and PIN members and this is informing the topics the HRA Community Insight Group is discussing. We will be doing another survey in the coming months.
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Radiation assurance for more studies
Our Radiation Assurance service will be expanding to accept all study types involving ionising radiation that take place in an NHS or HSC setting from 1 November 2021.
This change is part of the wider improvement programme for IRAS, and you can find out more about how to prepare on our website.
The legacy of Henrietta Lacks
Our Equality, Diversity and Inclusion Manager Lou Silver has blogged about the legacy of Henrietta Lacks – a Black woman whose cancer cells changed the course of modern medicine but were taken without her consent – and how informed consent must be at the heart of medical ethics and regulation.
Reviewing 'first' research
Dr Hugh Davies and members of our specialist Research Ethics Committee have written about how our volunteer Research Ethics Committee prepared for and reviewed the first global COVID-19 human infection challenge studies. You can read their article in the Journal of Medical Ethics.
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