The ability to learn is not fixed. Patient / Public involvement and engagement are about finding frameworks of useful dialogue between people who speak, think, learn, and live differently.
I have over eight years of experience in patient / public involvement and engagement (PPIE) focused in research, including neurosciences (clinical, pre-clinical, cognitive and computational), cancer research, and medical devices. My PPIE training and approach has been influenced by my research backgrounds (translational/biomedical neuroscience), my arts background, family members significantly affected by various health problems, and people I’ve met living with fatal and nonfatal conditions. I’ve previously utilised my cross-disciplinary perspective in PPIE to develop, optimise, and quantify programmes tailored for strategic impact. I’m now working toward streamlining the various approaches to PPIE for involving patients in the design and development of medical research throughout the research cycle.
PPIE Training and Discussion
I enjoy PPIE training and facilitating open discussions about all different areas of research. I have lead the development of several major research facility’s PPIE strategies and programmes. I also head the PPIE strategy on the board for my nonprofit, Movement for Hope. Regarding outcomes, I have facilitated panel discussions on PPIE for several research clients, tested ideas, re-developed and optimised the methods for accessibility across a wide variety of PPIE types. I have further trained clinical staff, undergraduate, MSc, and PhD students, patients, junior researchers and Principal Investigators, artists and public in PPIE and co-design of research at every stage of the research development.
Training with Amber
“In 2014, I went to a highly inspiring and captivating public engagement event organised by Amber. I attended my first patient/public engagement training with Amber the following year. I have now been able to apply my new skills and knowledge into running two creative public engagement events and have helped on several others including a sell-out educational art-science exhibition with an appearance from Russell Brand. Amber is not only an adept and skilled training manager but also an exceptional role model whose positive attitude has inspired me! She is highly motivated and hard working and I have no doubt she will continue to motivate others to create innovative, inspirational public engagement events in the future.” –Rohisha Luchun
Impact Data Capture
Below is a brief overview of some measures, but not all, of the data capture on patient and public engagement that Amber has created, directed and developed.
PPIE Directed by Amber
46Individual PPIE projects Amber has directed from inception to implementation in the last 5 years
A Snapshot of PPIE event feedback
"I enjoyed the interplay between scientists, performers and patients"− Carol Hovelidge, audience
"Fantastic event that gives insight to its audience and shines light into the lesser explored areas of society. Engaging presentations, informative and hopeful. Thank you!!"− patient audience
"I have no knowledge about science and I got this event! It was amazing! Thank you!"− public audience
“A highly thought-provoking evening, filled with performances and academic talks about neurological disorders, that successfully combined complex neurological ideas with innovative technologies and live performances.” – The Lancet Neurology
Self-report captured of the representative average of over 1000 attendees from different events in the last year, where Amber was the principal organiser.
Total funding awards that Amber has contributed to the PPIE strategies in the last 5 years (£) 23658500 Rounded sum of total GBP awarded, where Amber has written or contributed to the long-term PPI or PPE strategies on the grant
Creativity and Innovation
Creativity and innovation bridge gaps that people believe to be impossible. I utilise creative strategies to unite science, art, and technology to try to impact lives, improve research, inspire where possible and drive positive social change.