Creative Patient/Public Involvement & Engagement (PPIE) – combining art & science for research outreach and impact
I founded Movement for Hope (MfH) in 2011, before starting my neuroscience PhD at UCL, and ran it as a volunteer alongside my PhD until 2017. MfH was initially established as an awareness project focused on two progressive movement debilitating conditions called Multiple Sclerosis (MS) and Amyotrophic Lateral Sclerosis (ALS). I started the project by meeting with families affected by MS and ALS, painting portraits of them and abstracting the portraits with a biological component contributing to their disease. I filmed each step and created a multimedia awareness project called Paint Aware (a few videos under the “Creative” section).
In 2012 what started off as a small project using art, research and social media to generate awareness became a small group of four people meeting once a month to talk about how they could help communities using digital multimedia and research to raise awareness. We identified three target areas that they hoped to support in the future including awareness-education, adaptive equipment and research support.
By 2013 MfH had grown to a team of 20 regular volunteers that took on several projects globally. This was the start of a Fellowship Programme where volunteers trained in patient and public engagement, learning by doing. In 2014, MfH had an awareness-education reach of over 100,500 people, an adaptive equipment impact of 153 people, and completed projects in Europe, N. America, Africa, and Asia, all collaboratively developed by patients, researchers, and artists. In 2015 the organisation has focused its energy on scaling its impact using repetitive events and projects rather than one-off events.
I was awarded a UnLtd, HEFCE, and UCL Business Proof of Concept award to scale the organisation and improve its sustainability. By 2016, MfH had an extensive portfolio of patient/public engagement featuring a variety of creative projects and in 2017 they had a surprise visit from Russell Brand, and the venture’s flagship event, Rewired, was reviewed by The Lancet Neurology. MfH grew organically and was an initial taster for entrepreneurship derived from a need that I had the tools and capability to address. At the end of 2017, I started working for MfH, taking on three staff to scale activities and improve the nonprofit’s sustainability.
“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
Today MfH is currently providing patient/public involvement, engagement, and research communications services to sustain its growth and support their social targets.
In 2012 what started off as a small project using art, research and social media to generate awareness became a small group of four people meeting once a month to talk about how they could help communities using digital multimedia and research to raise awareness. We identified three target areas that they hoped to support in the future including awareness-education, adaptive equipment and research support.
I was awarded a UnLtd, HEFCE, and UCL Business Proof of Concept award to scale the organisation and improve its sustainability. By 2016, MfH had an extensive portfolio of patient/public engagement featuring a variety of creative projects and in 2017 they had a surprise visit from Russell Brand, and the venture’s flagship event, Rewired, was reviewed by The Lancet Neurology. MfH grew organically and was an initial taster for entrepreneurship derived from a need that I had the tools and capability to address. At the end of 2017, I started working for MfH, taking on three staff to scale activities and improve the nonprofit’s sustainability.