Our Future Health road-tests access process for researchers
The access process will play an important role in helping us to deliver our mission, by enabling research that will help people live healthier lives for longer through better prevention, earlier detection and improved treatment of diseases.
How the access process works
Our access process will be used to determine who can access the data our volunteers have shared with us and whether a researcher can re-contact volunteers, for example, to ask if they would like to take part in additional research, such as a clinical trial, or to collect new information. It will ensure that our approach to researchers applying to access data is consistent, fair, transparent, and accountable.
Firstly, researchers will need to apply to become an Our Future Health registered researcher, which enables us to check their credentials and experience, and ensure they are trained in data governance.
Once they have successfully registered, they will need to submit their study for consideration by the Access Board, which oversees applications and determines which studies can go ahead.
The Access Board includes experts, public representatives and, in time, will include volunteers to the programme.
The Access Board will ensure that only research that is in line with the consent volunteers have provided; is for public good; and is aligned to Our Future Health’s objectives will be approved. Projects will also need to adhere to the ethical approval issued to us by the East of England – Cambridge East Research Ethics Committee, overseen by the Health Research Authority. The access process will ensure that only suitable research studies are approved, and that access is provided in a responsible and useful way to benefit society as widely as possible.
As part of submitting their application, researchers will also agree to return the results of their research to Our Future Health for it to be made available to future researchers. Making information available to other researchers will help to advance discoveries in the field and maximise the public health benefits of the programme.
How has the access process been developed and tested?
Over the last year, the Our Future Health access team has been developing and testing the access process, reviewing best practice within the health research sector, and working closely with the new Access Board and our other advisory boards.
In parallel, work has been underway to develop Our Future Health’s Trusted Research Environment (TRE), a highly secure, online computing environment, which the majority of researchers will use to access volunteers’ de-identified data for approved studies. Find out more about how we make data available for research.
We have asked around 100 researchers, who also agreed to support us with testing our TRE, to apply using the newly developed access process, helping us to understand how it works in practice and refine it before allowing more researchers to apply to access the data.
We plan to publish the full access process later this year when we will start to review preliminary applications from researchers and when our TRE goes live. The access process will be kept under review and updated as needed, including in response to feedback from researchers and our advisory boards, which include volunteers to the programme.
We will publish a list and summary of all approved studies on our website so that volunteers, the wider public, researchers and policymakers can see how Our Future Health resources are being used and what studies are being carried out.