This webinar was hosted by Paul Wicks and featured Sano CEO Patrick Short, Rakhi Rajani from Genomics England, and Julian Hastings Ward who chairs the participant panel for Genomics England.
The link to the full webinar is here; a brief summary is below for easy reference.
About the speakers
Dr. Patrick Short
Dr. Patrick Short, PhD is the Co-founder and CEO of Sano Genetics. Sano’s platform helps clinical development teams to move 10x faster at 5x lower cost by automating entire workflows for protocols, consent, prescreening, genetic testing, and matchmaking with trial sites.
Rakhi Rajani
Rakhi Rajani is the Chief Digital Officer at Genomics England. She has a background in psychology and innovation and is committed to co-creating solutions with end-users.
Jillian Hastings Ward
Jillian Hastings Ward is the Chair of the Participant Panel at Genomics England, representing the interests of patients in decisions regarding their sequenced genomes and associated health data.
Highlights from the webinar
Why is patient engagement in the research process important?
The discussion first centered around the importance of involving participants in the research process and creating a more personalised and data-driven approach to medicine. One of the key takeaways was the importance of co-creation and co-design when it comes to developing products and services for participants. This involves patient engagement in the creation of tools, rather than simply imposing requirements on them. It is also about working together to define the solution and outcome of the research project.
Also highlighted was the importance of patient engagement in the development of precision medicine. As the scale of clinical trial patient recruitment goals for research increases, the data requirements are also increasing. Participants have a high expectation of their research experience, including convenience, communication, feedback, and the opportunity to contribute their experience.
What legal and ethical implications of patient engagement in research should be considered?
The panelists also discussed the challenges of managing participants' expectations and ensuring that they are aware of how their data is being used. Participants are protective of their health data and want to ensure that it is being used appropriately. They also want to be aware of how their data is being used and have a two-way connection with the researchers.
As the scale of population research increases, there are legal and ethical considerations that need to be taken into account. It is important to ensure that participants' rights are protected and that they are aware of how their data is being used.
Summary
This discussion highlighted the importance of participant engagement in the research process. Co-creation and co-design are essential in the development of products and services for participants. When involving participants to this degree, it is critical to manage expectations and ensure everyone has knowledge of exactly how their data is being used to drive science forward.