In this blog, Michael Prior shares his reflections on Patient and Public Involvement as part of the East Midlands Imaging Network (EMRAD) project and the importance of capturing the patient voice when trialing or informing new services.
My Background
I am someone with a long and complex medical history. I have a lot of debilitating side effects from heavy radiotherapy and chemotherapy treatments when I was a student at university 40 years ago.
The impact of all this led to my early retirement nearly 10 years ago now, after a career in pharmaceuticals and forensic science. Post-retirement, I wanted to get involved in improving healthcare as a way of giving back, as well as (hopefully) using some of my scientific and management skills from work.
At the start, I thought the letters PPI stood for ‘Payment Protection Insurance, but I quickly realised that PPI: Patient and Public Involvement was increasingly recognised as an important part of improving healthcare. I’ve had a range of PPI roles right across the healthcare spectrum, from general practice to hospitals, and in day-to-day care as well as clinical research.
I have been a PPI representative for EMRAD since 2015. It is a role that I have found interesting and rewarding in equal measure. In part because radiology has been so critical in my own medical story, but also because issues such as data protection and integrating computer systems overlap a lot with my past work experience.
The EMRAD Project
The purpose of the project, which started in late 2018, was to demonstrate that an Artificial Intelligence (AI) computer system could be used to interpret, or ‘read’ mammograms as part of the NHS national screening programme. At present, mammograms are read by two radiology professionals. The intention is that the AI system should in future replace one of the readers, which will help to build capacity and resource within radiology teams. The project vision was Capacity, Care, Confidence.
The project aimed to optimise breast screening Capacity and by so doing enhance the Care that every woman attending screening receives.
Demonstrating the quality of the AI system was vital to increase NHS and public Confidence in breast screening.
The project has recently come to a successful conclusion. It has led to a larger follow-on national project, which I hope will take the new technology towards routine use in breast screening.
My role and influencing decision making
A Project Board was established to oversee the delivery of the AI Mammography project. The board comprised representatives from the project team, NHS England, the external organisations providing the new technology, the EMAHSN and also a consultant radiologist. The board has been chaired by a senior manager from one of the EMRAD NHS Trusts. Right from the outset, two PPI representatives were asked to be part of the Board. I had the privilege of being one, and Christine Foster, who I have known for several years through our other PPI roles (and respect hugely), was the other. Our responsibility on the Board was to give a strong patient voice, particularly concerning the potential use of new technology in such an important NHS service.
The Board met monthly. Initially, most members met face to face at the EMRAD offices on the University of Loughborough campus. However, as with much of working life during the COVID pandemic, the Board has met latterly via online video conferencing.
My Reflections
In my experience, the right culture has to be in place for PPI to be successful. Such a culture starts with those in senior positions wanting to involve PPI representatives, not because it is a requirement mandated from NHS or funding bodies, but because they fundamentally believe it will add value in terms of better healthcare. The invitation to join the AI Mammography Project Board was a powerful demonstration of this kind of positive ‘PPI culture’. Sometimes, PPI is built into healthcare in the form of free-standing PPI advisory groups. Whilst these can be valuable, there is a danger that the impetus behind them can diminish over time, for example, key people on the NHS side get called away from the advisory group to other priorities.
As a PPI representative being invited into a high-profile project, I was conscious of my responsibilities to be an active and constructive contributor and conduct myself in the right way generally. Hopefully, I was successful in that regard!
Another important point to make is that PPI representatives, while their involvement is generally motivated through their experience as a patient or carer, they also bring with them all their other life experiences - from work and elsewhere. In that sense, the 2 P’s of PPI - Patient and Public – are embraced within the same individual. When managers get PPI representatives involved, it’s always important to have some time at the start to get to know them and learn about their background. The added value from PPI will be all the greater through drawing on all their knowledge and experience.
Learn more about the EMRAD project here: https://www.emrad.nhs.uk/