Our Future Health explores range of views on secure access to data
Our Future Health has begun a series of consultations that will help us design how we provide access to our data within trusted research environments (TREs). TREs are secure online environments that allow researchers to access de-identified data.
Our Future Health will be a resource that gives researchers from universities, charities, the NHS and companies involved in health research an opportunity to discover and test more effective ways to predict, detect and treat common diseases earlier.
As we design the Our Future Health trusted research environment and the accreditation criteria for trusted research environments hosting our data, we are gathering views from a range of stakeholders and the public to help shape our approach.
Our commitment to public engagement and involvement
We are committed to putting the public at the heart of our programme development and to upholding the public interest in every aspect of our work.
As well as working with our existing Public Advisory Board, we will be holding a citizens’ summit early in the new year, working with Ipsos MORI and Imperial College Health Partners. The summit will be an important opportunity to listen to the public and hear their views on our approach to the storage and provision of secure access to health data, including the use of technical solutions like trusted research environments.
The interactive event will take place online over three days and will be attended by a diverse group of people, reflecting our aim to ensure that the Our Future Health programme truly reflects the UK population.
Understanding researcher needs
We aim to make Our Future Health resources available to as many expert researchers as possible, so we want to understand their needs as we procure and build our own trusted research environment.
We are conducting a series of interviews with potential users of our TRE and are also asking researchers to share their experiences with us by completing our survey. It includes a series of questions about the research field they typically work within, preferred methods and tools, the type of data they tend to work with and their experiences with any other research environments.
The TRE survey is available here.
Wider sector engagement
Our Future Health is participating in the ICO’s Regulatory Sandbox, a service which supports organisations who are creating products and services that use personal data in innovative and safe ways. This will allow us to draw on expertise and advice from the ICO to ensure that data protection is embedded at the heart of Our Future Health, at every stage.
We also want to learn from wider best practice and existing expertise, so we are beginning a series of discussions this week with policymakers, government, the NHS, privacy, data security and technical experts, other research programmes and the life sciences sector.