Join us for this webinar on 'Meaningful technology: putting participants at the heart of research' with Genomics England.


Engaging participants in biomedical research remains a huge challenge. Even with a coherent cross-channel communications strategy it remains hard to meaningfully engage with participants as individuals in a way that maintains their interest over time. For the last year, Genomics England and Sano Genetics have been working together to better understand how research participants can be placed at the heart of research by using a dedicated online platform. Join Patrick Short, CEO of Sano Genetics, Rakhi Rajani, Chief Digital Officer of Genomics England, and Jillian Hastings Ward, Chair of the Participant Panel for Genomics England, for a panel discussion on what taking a participant-centric approach can mean for organisations supporting research.

Our host is Paul Wicks, Ph.D., a neuropsychologist and independent consultant who helps life sciences companies generate evidence, revenue, and awareness. Paul has dedicated much of his career to patient-centric research and building patient communities, particularly in rare diseases such as ALS/MND, IPF, and NMO. Paul has spent 19 years in the digital health and online community space, 13 of which were spent as a senior leader at PatientsLikeMe.

00:00 - Paul Wicks (Host) Intro to webinar
02:33 - Patrick Short (CEO, Sano Genetics) - brief presentations on motivators for research participant engagement
11:38 - Rahki Rajani (CDO, Genomics England) - introduction
14:10 - Jillian Hastings Ward (Chair, Genomics England Participant Panel) - introduction
17:23 - Panel discussion
17:30 - Where does GE strike the balance between research participant input versus participant involvement in governance?
19:30 - What are some of the concerns that research participants have voiced about biomedical data use and potential data security?
21:33 - How do we build into technology appropriate security provisions for the handling of sensitive clinical data?
24:25 - Given the scale of research to date and proposed for the future are digital solutions to engagement inevitable despite perceptions of security risks?
27:25 - Is the public’s perception of risk around data breaches actually reflected by reality?
28:39 - Is the conservatism in data use, because of the fear of misuse, undermining research?
31:59 - Questions from audience
32:20 - In the process of co-creation, what are your thoughts on asking the right questions of research participants and how do you think this influences the outcome?
37:00 - To what extent should we be striving to report to clinical study participants research outcomes ahead of their release into the public domain?
41:58 - How concerning are known personal data breaches or unanticipated access in biomedical research?
44:35 - Is there a distinction in concern for research participants over the management of their phenotypic data versus the genetic data?
52:44 - What does biomedical research and healthcare look like in 10 years time?
58:19 - Final comments by Paul Wicks and wrap-up

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