This week, Action for ME presented on the role of Public and Patient Involvement (PPI) within the DecodeME study at Voluntary Health Scotland’s Annual Conference.
As finalists in the conference’s poster competition, Avril, our Projects and Participation Senior Practitioner, showcased how DecodeME has embedded meaningful PPI throughout its governance, design and delivery.
The poster highlighted how DecodeME’s PPI Steering Group has acted as an equal decision-making partner, ensuring that people with lived experience of ME/CFS are represented at every level of the study.
PPI has helped make participation more accessible, particularly for those with severe ME, and shaped the study’s communications and questionnaires. PPI also supported recruitment, making DecodeME the world's largest ME/CFS study, and ensured that participants’ experiences and priorities are reflected throughout the research process.
Members of the DecodeME team also reflected on how having PPI in leadership and management roles has influenced how the study approaches expertise, valuing lived experience alongside scientific knowledge.
"Having PPI in leadership positions and making key decisions has not felt like an afterthought, but something crucial to the study functioning as it has" said one team member.
Find out more about DecodeME and our partnership with the University of Edinburgh.
