Presented by Jillian Hastings Ward, Chair of Participant Panel at Genomics England and Rebecca Middleton, Vice Chair of Participant Panel at Genomics England
- Jillian is the Chair of the Participant Panel for Genomics England - her son was diagnosed with a mutation in GRIN1 as a result of the project.
- Genomics England has made patient involvement an essential part of the project from the outset, and the Participant Panel has a say in every major decision.
- The Participant Panel works as the advisory board, or a critical friend, of Genomics England ensuring the data collected by the project is being used in the best interest of participants
- When Jillian’s son was finally diagnosed with a rare condition this led to a shift in the nature of the relationship between them and the clinician to a more collaborative space. A shift in the interaction that is seen widely throughout the rare disease community following diagnosis.
- Patients know their disease better than anyone else. They can help advance treatments and cures and are the “secret sauce” for successful research and biopharma partnerships.
- Traditional research and funding approaches are fragmented. But, patients and carers have the power to inspire physicians and researchers, organise networks, and contribute data and funds.
Presented by John Wilbanks, Chief Commons Officer at Sage Bionetworks
- Sage Bionetworks explores how open, collaborative and team science can make the claims that come out of science more reliable.
- It achieves this by making the data more responsibly sharable, providing researchers with more, better representative, data from which to better draw conclusions.
- The Sage Bionetworks design system is a collection of reusable components, guided by clear standards, that can be assembled to build applications for data capture.
- Start with the user and design for trust. Be ethical, relatable and personal. Align with both the user and scientific context. Make things open, it makes things better.
- To understand users needs: understand the user’s lifestyle; don’t make assumptions; do research; talk to the users; analyse the findings.