The Rare Grain of Ideas
The Rare Grain of Ideas
Dr Rona Smith, medical director for Patient Led Research Hub (PLRH) Cambridge, co-produces projects with patient partners.
This approach is not exclusive to rare disease research. The unusual collaboration intuitively avoids preconceived ideas about research, advocating for what is important to those affected.
Rare disease studies bring concerns about being lost in a crowd, being invisible or specific needs being diluted within larger focus groups.
The triptych, with sweeping curves, converging almost like a Venn diagram, illustrates the crossover of patient interests, juxtaposing a fluid commonality in direction, where patient and clinician can agree on research priorities.
Tiny, gold-leafed wheat grains represent the germ of an idea, clustering together small numbers affected by rare genetic disease, pilgrimaging along the curves with a unified goal.
There is comfort despite the uncertainty of the outcome; an intersection between life and health, preserving not only individuality of rare disease, but strength in numbers.
Artist – Dr Kate Grant
Dr Kate Grant has painted portraits and seascapes for 30 years, sci-art collaborations for 10 years.
She brings a unique representational approach to human pathology, histology, genomics and microbiology, using resin for sci-art pieces.
Kate is a physician, illustrates for a medical podcast and book covers for Cambridge University Press.
Scientist – Dr Rona Smith
Senior Research Associate, University of Cambridge
The PLRH evolved from the desire of patients to be meaningfully involved in shaping the research agenda, formulating research questions and prioritising outcome measures of greatest importance to them.
As the PLRH has shifted focus to rare disease, an exciting new initiative partnering with CamRARE has led to the development of the community-led Rare Disease Research Network (RDRN; rd-rn.org).