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The role of PPIE in Discover-NOW

John Norton, Citizen Partner on the Board of Discover-NOW, shares his reflections on Public Patient Involvement and Engagement.

Having worked for a number of years in patient safety with Imperial College Health Partners (ICHP) I’ve seen the development of the North West London Health Research Register (I think I was number 9 to sign up!) and the potential of public participation in research. I was delighted to have been asked by ICHP to take part in the application process for the Discover-NOW, health data research hub for real world evidence, and then later join the Board as a Citizen Partner.

Discover-NOW, through bringing information that already exists about us as patients together and enabling researchers and scientists to access this in new and secure ways, has the potential to unlock new life saving treatments or even preventing diseases altogether. Central to this is ensuring robust and progressive citizen engagement to build trust and ensure Discover-NOW are operating in line with citizen expectations.

I have now been working in Patient and Public Involvement and Engagement (PPIE) in research for nearly four years and I have learnt how valuable this is in many different ways. PPIE must not be tokenistic but be embedded from the person to population such as: identifying topic areas for research, supporting application for research funding (which now very often require evidence of PPIE), helping to focus the project in a way that takes account of the lay viewpoint, ensuring that the results are widely disseminated and not only in professional journals and then translating/ sharing the research findings to have a wider impact for population health.

I have also found that PPIE benefits those who are involved, finding their roles rewarding and having a positive impact on their wellbeing as well as benefitting the research. In some circumstances, as has now happened twice to me, you can be asked to be a co-author of the report when it is published, something I never dreamt of!

Discover-NOW have been building their approach to PPIE and embedding the recommendations from the One London Citizen summit including the establishment of their own a Citizen Advisory Group (CAG). It is refreshing to see this innovative approach continuing this time focusing on the diverse population of north west London. The participants are from across the patch all from different walks of life and with different attitudes and perspectives.

Due to the pandemic the CAG has had to run virtually but so far have been able to hold two workshops, attended by over 40 citizens, successfully developing a set of recommendation around data access.

It has been truly impressive to witness such a broad range of views from such a diverse group, really getting under the skin and grappling with these complex issues. It demonstrates the power and effectiveness of informed conversation to explore people’s expectations and to involve them in genuine decision-making.

It is vital that these recommendations now don’t just sit in a report but this work ensures legitimacy in the Hub’s approach and clear expectations to inform all of elements of work and future direction.

I’m looking forward to these recommendations being received by the Board and supporting their adoption and spread far and wide.