I represented BIOS at the HRA consultation in Cardiff on July 31st 2019 which concentrated on how to improve transparency in research. (Twitter #MakeItPublic) The day concentrated on clinical trials, but guidelines might well extend to wider health research in the future.
The consultation is considering different ways to increase public and participant access to research and is focusing on
- registration of studies on a central register – so that people can find out what is being done
- making it public – making research progress and outcomes easily accessible to everyone, in plain English and in the formats people want
- keeping research participants involved and informed about trials progress and outcomes
They are interested in the views of all stakeholders, from senior investigators to every participant. Full details of the proposed changes are at https://www.hra.nhs.uk/about-us/consultations/make-it-public/ and there is an opportunity to complete a survey so that your views can be heard. https://www.hra.nhs.uk/about-us/consultations/make-it-public/how-can-you-respond/
From the BIOS perspective, my priorities were advocating for easy, proportionate reporting that would be possible for small or minimally funded studies with minimal administrative support.
The outcomes and any new rules will be published early in 2020, but in the meantime, if you are planning any research, think about how you might do all these things in your studies, because you will probably be asked to give details in any applications!
If you are interested in public involvement more generally, email [email protected] to be involved with their network.
Anna Horwood
Research Director