1. Engagement 2.0 – views of Biobank participants regarding Dynamic Consent Dr Harriet Teare University of Oxford

2. TRANSLATION IN HEALTHCARE 24 th June 2015 Use of IT in research Providing information Conducting research Hearing from participants Research governance

3. TRANSLATION IN HEALTHCARE 24 th June 2015 Web 2.0/3.0

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5. TRANSLATION IN HEALTHCARE 24 th June 2015 Applications for health

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7. TRANSLATION IN HEALTHCARE 24 th June 2015 Paper recruitment processes Limited face-to face contact with participants (beyond recruitment) Newsletters / bulletins

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10. TRANSLATION IN HEALTHCARE 24 th June 2015 Electronic consent: with consent preferences stored online, to revisit, consider and update. Online secure personal profile – with updates on how your samples/data have been used Research updates and biobank news Use of different media: videos, audio, animations, interactive diagrams Tailored to the individual – what do you want to know, and when?

11. TRANSLATION IN HEALTHCARE 24 th June 2015 Electronic consent processes Ongoing contact – the start of a conversation Interactive engagement

12. TRANSLATION IN HEALTHCARE 24 th June 2015 Focus groups with biobank participants 3 biobanks: – Musculoskeletal – Diabetes (healthy participants) – Sarcoma 2 part discussion: 1.Experiences of biobanking and consent 2.Exploring the dynamic consent prototype

13. TRANSLATION IN HEALTHCARE 24 th June 2015 Results

14. TRANSLATION IN HEALTHCARE 24 th June 2015 Current experience ‘at the moment, we're, you know, we're giving our consents and then go away and we don't think any more about it’

15. TRANSLATION IN HEALTHCARE 24 th June 2015 Benefits of Dynamic Consent ‘if we can log on online back to our person[al] information we can double-check that we ticked that box to say “Yes”’ ‘I suppose you'd you want to an email alert to say “Just used your sample” and then you can log in and see what it's being used for...’

16. TRANSLATION IN HEALTHCARE 24 th June 2015 Withdrawal ‘I can't see it being used, but I think it, I think you have to put it in to make people feel that they are being helpful rather than just simply as tools being used’

17. TRANSLATION IN HEALTHCARE 24 th June 2015 Control of your own data ‘If it was a little box I can tick to say “Yes, I'm happy for you to pass on my biobank information to [specific] research project[s] because I'd be interested in getting involved” that's great’

18. TRANSLATION IN HEALTHCARE 24 th June 2015 Engagement ‘Yes, it is something I've mentioned before, I would like to [know] more of what you are doing, but I would like to know in fairly lay terms’

19. TRANSLATION IN HEALTHCARE 24 th June 2015 ‘Informed’ consent ‘there's a place for [videos] and… a place for the written word and some suit some people, and some will suit the others’ ‘all have [their] own interests and [their] own scope of knowledge’ ‘could access it at different levels, depending on where they're coming from’

20. TRANSLATION IN HEALTHCARE 24 th June 2015 ‘It makes it more sort of dynamic, and interactive [compared with] the current system where we sit and wait to hear something’ In summary:

21. TRANSLATION IN HEALTHCARE 24 th June 2015 Towards ‘Engagement 2.0’

22. TRANSLATION IN HEALTHCARE 24 th June 2015 Timing Research participation Autonomy Consent Knowledge

23. TRANSLATION IN HEALTHCARE 24 th June 2015 Timing 1.0 2.0

24. TRANSLATION IN HEALTHCARE 24 th June 2015 1.0 2.0 Research Participation

25. TRANSLATION IN HEALTHCARE 24 th June 2015 Autonomy ‘The subject was recruited to the research project’ ‘The participant drove the partnership’ 1.0 2.0

26. TRANSLATION IN HEALTHCARE 24 th June 2015 Consent 1.0 2.0

27. TRANSLATION IN HEALTHCARE 24 th June 2015 Knowledge 1.0 2.0

28. TRANSLATION IN HEALTHCARE 24 th June 2015 TRACKS for ‘Engagement 2.0’ Feature‘Engagement 1.0’‘Engagement 2.0’ TimingLinear flow, one time decisions Iterative processes supported, ability to review and revise decisions Research participation Flyers and leaflets Conversation from consultant to participant Option to search for participation opportunities Dialogue with researchers Notification of opportunities AutonomyPassiveActive, empowered, ongoing ConsentPaper based, broadDynamic KnowledgeBiobank specific leaflets and resourcesParticipant specific information, opportunities to share experiences and questions with community of participants

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30. TRANSLATION IN HEALTHCARE 24 th June 2015 -Arrange a telephone call to consent -Consent form signed and returned -Diagnosis confirmed with doctor -Participants provided with login

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43. TRANSLATION IN HEALTHCARE 24 th June 2015 Use of IT in research Providing information Conducting research Hearing from participants Research governance

44. TRANSLATION IN HEALTHCARE 24 th June 2015 Acknowledgements Michael Morrison, Jane Kaye, Edgar Whitley ELSI 2.0 collaborators EnCoRe Project members The Rudy Study Wellcome Trust; EPSRC; ESRC, IMI-JU, TSB Oxford Musculoskeletal biobank Oxford Sarcoma Group Oxford Biobank OxPaRRM The DIRECT Project HeLEX Centre harriet.teare@dph.ox.ac.uk