Towards 'engagement 2.0': insights from a study of dynamic consent with biobank participants

Teare, Harriet, Morrison, M., Whitley, Edgar A. and Kaye, Jane (2015) Towards 'engagement 2.0': insights from a study of dynamic consent with biobank participants. Digital Health . ISSN 2055-2076

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Abstract

Web 2.0 technologies have enabled new methods of engagement, moving from static mono-directional sources of information to interactive user-led experiences. Use of Web 2.0 technologies for engagement is gaining momentum within the health sector however this is still in its infancy in biobanking research. This paper reports on findings from focus groups with biobank participants to gauge their views on a Web 2.0 dynamic consent interface. The findings from this study suggest that participants would welcome more interactive engagement with biobanks, and the opportunity to hear more about how their data and samples are being used in research. We propose that by adopting Web 2.0 tools for dynamic consent, we can move towards an ‘Engagement 2.0’ model whereby research participants have the opportunity for more interactive engagement with medical research, setting up a two-way communication channel between participants and researchers, for the benefit of both.

Item Type:	Article
Official URL:	http://dhj.sagepub.com/
Additional Information:	© 2015 The Authors © CC BY-NC 3.0
Library of Congress subject classification:	B Philosophy. Psychology. Religion > BJ Ethics H Social Sciences > HD Industries. Land use. Labor > HD28 Management. Industrial Management R Medicine > RZ Other systems of medicine
Sets:	Research centres and groups > Information Systems and Innovation Group
Funders:	Technology Strategy Board, Engineering and Physical Sciences Research Council, Economic and Social Research Council
Projects:	EP/G002541/1
Date Deposited:	20 Aug 2015 15:45
URL:	http://eprints.lse.ac.uk/63278/

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