Leadership blog with Diana O’Rourke from NICE, Projects & Impact analysis Co-Leader

What is your current role in the organisation you work at? 

I am a Senior Analyst in the Science, policy and research programme at the National Institute for Health and Care Excellence. My role involves providing leadership and support and ensuring the delivery of key tasks and deliverables across several current and past IMI research projects including NEURONET, ROADMAP and HARMONY.

How are you involved in the Neuronet project?

As NICE is the co-lead for Work Package 1, my main involvement in Neuronet has been in leading regular work package calls as well as undertaking some of the key tasks and deliverables for the work package. This has included gathering project information, analysing the portfolio and undertaking a mapping exercise of global research in neurodegenerative diseases. With my colleague Jacoline Bouvy, I chair the Regulatory liaison working group and have developed the first version of a decision tool to support the projects in engaging with regulators, HTA agencies and payers in the EU.

What do you see as the most prominent challenges for regulatory in PPP projects?

Regulatory input can be extremely valuable for many PPP projects. However, listening to the experiences of some projects, it is not always seen as relevant or is not prioritised or funded, therefore can often be overlooked in the delivery of projects.

What are your expectations from and hopes for the neurodegeneration research in the post-COVID era?

We know that the COVID-19 pandemic has had a huge impact on the resources and funding for neurodegeneration research which could ultimately affect efforts to find new treatments and better care for people living with these diseases. However, the impact of neurodegenerative diseases continues to be a major challenge. We therefore need a renewed focus and effort from both governments and research funders to re-build the momentum and drive research in this area forward as we enter the post-COVID era.