Why does the Health Research Authority (HRA) exist?
You might be thinking to protect and promote the interests of participants, to run a national research ethics service, confidentiality advisory service, approvals or the various other things we do.
All perfectly good answers, but also, perfectly wrong.
The vast majority of what we do today happened, in some way, in some place before the HRA was created and so that can’t be the reason the HRA was set-up.
In truth, the HRA was set up to transform the health and care research regulation and approvals system in the UK. Working with a wide range of partners, boy, have we done that.
We are at a crossroads again. The way research is done, by whom, and for what reasons have all been evolving; the pace of evolution has rocketed over the last couple of years. How we deliver the ethics service must also continue to evolve.
In 2021 we launched the Think Ethics programme to streamline, accelerate and improve research ethics review, whilst earning public trust and helping to make the UK one of the best places in the world to do health and social care research.
Think Ethics directly supports the HRA’s overall mission to make it easy to do research that people can trust. The programme acknowledges the proportionate and balanced role Research Ethics Committees (REC) play and supports and facilitates the research community, whilst, and more fundamentally, ensuring that research is trustworthy.
Ethics review is of course fundamentally about trust. It reassures the public that research is designed and carried out in a way which responds to their needs, enables them to make informed choices about whether to take part and ensures they are treated fairly.
The Think Ethics programme was set up to build on our longer running service improvement work. Bringing together many initiatives in one place, so we could consider all our improvement activity as a whole.
The aims of the programme are to ensure:
- fast, proportionate ethics review focused on key ethical issues in a consistent way
- clear and concise study information designed with and for patients and study participants
- a rewarding experience for diverse, skilled and committed REC members
- a streamlined and user-friendly service, attracting world-leading health research in the UK
This work needs to be done carefully, otherwise we will do more harm than good. And so the programme did extensive discovery work from 2020, culminating in a public dialogue exercise early in 2022. That work was insightful in terms of what we should change, and also showed significant support for the next steps when the programme closes in March in a formal sense.
Now we need to deliver on that expectation and repay that support.
We are currently taking three areas of work forwards:
- innovative, proportionate review processes, which maximise consistency of how RECs review, and minimise the burden for the research community and committee members
- establishing clear consistent standards for participant information to help people make well informed choices about research
- increasing public awareness of the HRA and what we do to build trust in research, and gain feedback from patients, the public and potential participants
Having done the discovery work and considered all possible changes in the round, we now take the implementation work back into our ongoing improvement mechanisms. As well as deliver change, this will ensure that Think Ethics is not a short-lived project but becomes part of how the HRA works and how the research community approach their work.
In this way, Think Ethics will become part of the reason the HRA exists, continuing to transform and evolve the health and care research regulation landscape of the UK.