GNCR Ecouter – analysis, feedback, recommendations GNCR Network event, July 10 th 2018

1. GNCR Ecouter– analysis, feedback, recommendationsGNCR Network event, July 10th 2018

3. GNCR Professional ECOUTER • 26 Exhibitors, 350 attendees • targeted at health and care professionals and academics • how can we capture permission from 3.6million people to share (or not share) their health and social care information for direct care, research and planning? • workshop design based on the ECOUTER method developed by Madeleine Murtagh and team at Newcastle & Bristol universities • ideas and concerns were captured on sticky notes, collected into a spread sheet after the event and analysed for themes by Dr Michaela Fay. • Feedback • to inform the next iteration of the Healthcall/ Inhealthcare model. • to learn more about the legal, social, and technical aspects of information sharing requirements, specifically in relation to preferences, confidentiality, and consent.

4. The ECOUTER Method • The ECOUTER methodology for stakeholder engagement aims to open up discourse and facilitate conversation to capture a range of perspectives while assuming none to be privileged • It is not a ‘consensus’ method so does not seek a final or fixed answer; it is part of a process • Questions are posed to excite and elicit responses ECOUTER Steps 1 to 4 • Engagement and knowledge exchange (‘mind mapping’) • Analysis/synthesis • Conceptual framework/recommendation development • Feedback and refinement (Murtagh et. al., 2017, https://doi.org/10.1186/s12910-017-0167-z )

5. The ECOUTER exercise Participants were asked to: • 1) to reflect on what capturing permission for sharing health and social care information would mean for them with regards to direct care; service planning, and research issues • 2) describe what is needed to make citizen-led preference setting work in their role or organisation

6. Findings “We underestimate our population – they do get it”

7. “Are we [practitioners] clear what is needed legally vs. what is needed ethically/for engagement”?

8. Trust Patients, Public Practitioners • Opt in/Opt Out (easy to change, easy to access) • Granularity • Don’t sell • Don’t hack • “Need to trust who has the data – NHS = ok, outside is not”. • NHS branding • Plain English explanations/FAQs • Access, vulnerability, capacity • “Do not make the health divide worse by making digital platforms the panacea” • Data storage • “who manages and owns the system to do this”? • Explain consent and preference setting and reasons for them • “break down the fear of what we can and cannot do as clinicians with or without consent” • Buy-in • “Staff knowledge and understanding first – otherwise they can’t support patients

9. Culture Change • Raise awareness of information sharing and preference setting across board • Normalise data sharing • Share the good news stories • Organisations (still) protective of ‘their’ data • Improve the image of (academic) research among patients, publics and practitioners.

10. Transparent Infrastructure - making it work for all • Consistency (organisations as well as region) • “Make it easy to do” • Common language and terminology, Plain English • “Clear, uncomplicated, commonly used phrases and explanations” • “A single page, plain English description of what the GNCR is, what, why, how” • Simple for users • “Clear definition of what is required of the service user” • And what about social care data??

11. Practical (IT) barriers • First step is to get patients online • [I am] “shocked that we are not collecting emails” • Too many IT systems being used for successful information sharing • “true interconnected systems” are needed • “Transportability of data – systems talking to each other, same top level interface • IT changes require training, time, organisational change • A good system saves staff time: “we don’t’ have to search for information + saving time between touch points” • “Training and lots of it”

12. Example preference setting tool • Needs to be simple and accessible for all • “Plain text, not flowery” • Buy-in: “Trust from ALL Stakeholders” • “Need to collect email addresses” • “Understanding of what ‘citizen led preference setting’ really means” • Get the granularity right • Is it ‘consent’ or ‘preference setting’?? • Link with National App • Combine digital approaches with face-to-face • “Articulate the benefits to patients and publics, clinicians, administrators, families/carers etc.”

13. Health, the NHS, and ‘Research’ – that old chestnut • “Research is the biggest challenge to succeed in. Why don’t we just get [on] with the rest and park research”? • “Why focus on research now? Move forward with a shared platform” • “Too fixated on research. Need to deliver benefits for direct care. People are far more likely to agree on sharing data for care purposes. The secondary purposes (service planning & research) will come later as trust grows” • “Academic vs. commercial use” • “Not for Drug Companies” • “Research needs to be broken down more. Pop Health, drug trials, health data research” • “NHS needs to be more ruthless – don’t give choice”

14. Recommendations • “Do not make the health divide worse by making digital platforms the panacea” – don’t rely on technological solutions for health problems • IT systems need to be easy to use and link up across services and sector • Ease of access (one platform, one password, one user name) • Not being online/email address • Mobile friendly • Granularity • Opt in/Opt out • Sexual/mental health • Keep citizens in the loop • Regular engagement workshops with frontline staff => buy-in & understanding of research benefits • benefits of academic research not clear • Research for patient benefit • Commercial research/Trust • Clarify Consent/Preferences across stakeholder groups • Plain English documentation (FAQ sections/ 1-pagers)

15. Questions & Discussion

16. Dr Michaela Fay (PhD) Research Consultant 28 Eversley Place Newcastle upon Tyne NE6 5AL Email: info@michaelafay.co.uk Web: www.michaelafay.co.uk