Discover-NOW is the Health Data Research Hub for Real World Evidence. They work with data from the NHS in London and Manchester, with appropriate controls and consent, to support research to find new ways to diagnose and treat disease and make care for patients better and safer.

In your opinion, why is PPIE so important to health data research?

Imperial College Health Partners proudly host Discover-NOW, the Health Data Research Hub for Real World Evidence, and believe fundamentally in health data being used responsibly for research into treating and preventing disease.

However, we know that these benefits are only possible if we have the support, confidence and trust of our communities. Engaging with patients and the public in a timely and meaningful way is crucial to building and maintaining this trust.

Where has PPIE had an impact at Discover-NOW?

One of the most effective ways of developing public trust in our work is by investing in a genuine and deliberative discussion with our communities, with involvement and support from experts in research and data use to help inform these discussions.

Discover-NOW is proud to partner with the OneLondon Local Health and Care Record Exemplar (LHCRE) programme which carried out one of the UK’s most progressive large-scale public deliberation events on the use of health and care data.

Discover-NOW are committed to the recommendations from the OneLondon Citizens’ Summit and have progressed our alignment, from rigorous adherence to the ‘five safes’ in the establishment of our Trusted Research Environment (TRE), to our commercial framework where we operate a fee for access model with tiered pricing based on organisation type. In line with the expectations set by the public in the Summit with regards to transparency, we publish a summary of all projects accessing the data and have more recently launched a summary specific to Covid-19 related projects.

Following the Summit recommendation regarding future involvement of the public in policy development and decision making, we have also established a Citizens Advisory Group (CAG). The CAG brings together a diverse group of 40 citizens, reflective of our diverse North West London population, in a set of mini-deliberations, to explore, discuss and deliberate key dilemmas facing the Hub to inform decision making and policy development. Including:

  • What conditions need to be in place for non-NHS partners (universities, industry, charities) to have access to health and care data in a trusted research environment?
  • How the value of Discover-NOW’s health and care data for research can be realised and distributed?

The levels of engagement, discussion and deliberation across the CAG workshops have been exceptional – and the rich conversations have demonstrated the effectiveness and importance of involving citizens in genuine decision making.

The resulting expectations and recommendations from the CAG have been received by the Discover-NOW Board and are already directly influencing how data is used and accessed for research purposes in North West London. We are also working with our wider networks, including the other Health Data Research Hubs nationally, to ensure the findings are shared on a larger scale.

What do you want to see in the future when it comes to involving patients and the public?

At Discover-NOW we are committed to involving patients and the public in a meaningful way to ensure trusted use of data.

There is an important opportunity for national programmes, such as GPDPR, to scale work that has been taking place locally to build a transparent, informed and authentic dialogue about health data. It is a chance to drive honest, frank conversations and to embrace the complexities and issues raised. This is crucial to building and maintaining trust.

Through local evidence, such as OneLondon and our CAG, we know that the public is incredibly supportive of data sharing if engaged in a genuine, timely and authentic way, giving them the opportunity to shape how data sharing happens. We also appreciate there are many challenging issues in this area and working in partnership with the public will allow us to both move faster and further, to together realise the countless benefits of health and care data for research.

You can find out more about Discover-NOW here. Further information about our Citizen Advisory Group is also available on our website.

If you would like to learn about how to get involved with our work at HDR UK, please visit our opportunities page and sign up to HDR UK Voices.