|
Product Design Lead
Genomics England
2022
Future platform
Research
Genomics England partnered with the NHS to expand genetic research participation.
With the growing number of participants, it needed to revamp its online platform while keeping trust and consent front and centre. Our job was researching and ideating new participation tools for a future platform.
ProblemStoring and handling genetic data come with unique concerns around transparency, consent and ethical usage. What kind of tools can both provide value to research participants and increase their trust in Genomics England, which is crucial to successful participation?
Doing research with vulnerable peopleOur research approach was participant-centric from the start. We thoroughly studied the different cohorts and mapped representative journeys, from opting into genetic research to getting results - which can be either positive or negative.
The user interviews explored participants' lives with or as carers for a child with a rare disease. We asked about the meaning of genetic research, hopes for finding a cure, and the possibility of participating in research that could support medical discoveries. The feedback was invaluable, highlighting primary concerns about data transparency, giving and revoking consent, and the need to clearly understand research progress and outcomes.
We collaborated with the client remotely and in person
And synthesised heaps of research data into useful deliverables
Personas were co-created with the Genomics England team
OutcomeOur focus then was on product concepts that could give research participants more agency, help them provide informed consent, and track their genetic data and its use in medical research.
At the end of the research and design journey, we presented Genomics England with a comprehensive research document encapsulating a set of prototypes for a future participant platform.
Agency: Projects by If
Product & strategy lead: John Ridpath
Technology lead : Peter Wells
Service design lead: Peter Nsanze
Research lead: Imogen Meborn-Hubbard
Product design lead: Yarden Gur
Researcher: Nataly Romero