What constitutes a fair partnership between the NHS

“What constitutes a fair partnership between the NHS and researchers, charities and industry on uses of NHS patients’ data and NHS operational data? ” Chris Carrigan Saturday August 31, 2019 Citizens Jury, Taunton

About use MY data • use MY data is a movement of patients, carers and relatives • use MY data supports and promotes the protection of individual choice, freedom andevery privacy in the sharing of healthcare data to to Our vision is of patient willingly giving their data improve patient treatments and outcomes. help others, knowing that effective safeguards to maintain • use MY data endeavours to highlight the many benefits that the confidentiality and anonymity of their data are applied appropriate usage of healthcare data can make, to save lives and consistently, transparently and rigorously. improve care for all. • use MY data aims to educate and harness the patient voice to understand aspirations and concerns around the use of data in healthcare delivery, in service improvement and in research, aimed at improving patient decision making, treatment and experience.

“What constitutes a fair partnership between the NHS and researchers, charities and industry on uses of NHS patients’ data and NHS operational data? ” • The challenges and benefits of such partnerships • Who are the partners? • Trust levels in those involved will differ • Not everyone thinks the same • The principle of “reasonableness” • What you expect or deserve • Done according to the rules

“What constitutes a fair partnership between the NHS and researchers, charities and industry on uses of NHS patients’ data and NHS operational data? ” • What do you mean by fair, and how do you measure it? • Who benefits, and how? And who benefits most? • Does everyone have to benefit? • Does “benefit” just mean money? • How do you equate different types of benefit?

A key principle - Transparency • Accessible – easy access to information * • Understandable – the right language for the audience • Relevant – addresses audience concerns • Useable – in a form that meets the audience needs • Assessable – is checkable/provides sufficient detail * • Being as pro-active with ‘bad news’ as with ‘good news’ • Being timely with communication

Transparency – Accessible * • Accessible – easy access to information • Easily see what data/information is there • Meta-information i. e. the rules about what is there, how it is held, what are the rules/processes for access etc • Must also be clearly available, must be understandable, and adherence to the rules stated (both the legal ones and the self-imposed ones) must be checkable • There must be a clear statement on what rules are used to check that the data is eligible for inclusion. Can I be excluded?

Transparency – Assessable * • Assessable – is checkable/provides sufficient detail • Bland ‘PR’ statements tell the audience nothing • How you can dispute the content and what processes would they use to check

Frustrations and blockers: direct views of members • I think transparency requires a large cultural change to achieve it – hence it is a long term project • It requires levels of openness & honesty of which many are afraid – the benefits of transparency are not communicated or understood • It means disclosing things as they actually are rather than what they would like them to be. It involves receiving criticism and coming up with workable solutions • It requires calling a ‘spade a spade’ and not using trendy phrases inappropriately to mask the reality e. g. ‘real time’ means near to instant (i. e. a couple of seconds max), not 24 hours, 1 week, 6 months or a year later • The fundamental problem is people, not systems or processes • There are no obvious ‘leaders’ in this field that the public are aware of • Everyone uses different vocabulary to describe transparency and, if they have statements on the subject, the statements tend to have different scope so you always end up with unanswered questions when you try to understand any particular organisation’s approach

Workshops with a commercial focus • Who uses your data? – September 2016 • Bringing together: Med. Confidential, Roche, Wellcome Trust • Commercial access to patient data ~ October 2017 • Bringing together: ABPI, Astra. Zeneca, Harvey Walsh Limited, IQVIA, Med. Confidential, NHS Digital, Understanding Patient Data • Your data, your control – May 2018 • Bringing together: Medicines Discovery Catapult, Microsoft Research, Royal College of General Practitioners

Direct engagement with the AI sector • Deep. Mind Health • We have taken part in several engagement projects with Deep. Mind Health • Microsoft Research • Engagement around their machine learning work and the NHS - Project Inner. Eye • Benevolent AI • Recently approached us seeking patient engagement

Projects with commercial companies • Christie/Roche precision cancer research partnership • use MY data is involved in this, by providing input on the patient engagement side of the partnership • Campaign on the low use of tissue samples in UK tissue banks • Roche has recently given us a grant towards this campaign and we will be working with Medicines Discovery Catapult, amongst others.

We need the support of patients and society to help us make progress, so let’s acknowledge it

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