Public attitudes to commercial access to health data An Ipsos MORI study commissioned by the Wellcome Trust Workshop on Patients’ Control over Patient Records 10 March 2016 Dr Natalie Banner n.banner@wellcome.ac.uk @natalie_banner
Commercial access to health data Background Context Public reaction to care.data Concerns about surveillance culture and how data is collected and used Increasing interest in ‘big data’ potential, especially in health Previous research People are generally positive about personal health data use for research But , wariness and low acceptability for commercial involvement
Commercial access to health data Methods • Qualitative workshops – 200+ participants What: • Interim analysis • Quantitative survey – 2000+ Who: • Public • Patients • Rare disease patients • GPs/hospital doctors • Research cohort members • Real life case studies and ‘what if’ scenarios How: • Range of different commercial organisations
Commercial access to health data Key findings: Context and awareness Some awareness of health data usage, but little depth of understanding How much, if anything, would you say you know about how the following organisations use health data for these purposes?* 33% 21% % A great deal NHS 12 21 29 21 16 1 % A fair amount 16% 58% Commercial % Just a little 5 11 25 27 31 1 organisations % Heard of, know nothing 18% 56% about % Never heard Academic researchers 5 13 25 25 31 1 of Base: 2,017 GB adults, aged 16+ *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 7
Commercial access to health data Key findings: Factors and ‘key tests’ What drives acceptability: in summary More acceptable Less acceptable/red lines Mix of Clear Solely Why public and public private private benefit benefit benefit No link to Who For profit Public improving Uncertain but in health health public future users providers sector health Identifiable Genetic data & Aggregate personal What Aggregate any with passively details with but risk of uncertain collected jigsaw ID real world future implications implications How Secure storage & regulation is assumed 1
Commercial access to health data ‘Context collapse’ Two traditional mindsets for data sharing Actively given Service using Buying ‘My data has financial value’ My health records for Open, vulnerable Financial transaction ‘ We’re all helping each other ’ Commercial my care Open, vulnerable mindset Commercial transaction mindset: mindset: “We are helping “My data has each other” financial value” Being Doing Existing in public space Data transaction Online banking Seeing your GP Loyalty cards Attending A&E Passively taken Social media Collecting prescriptions 4
Commercial access to health data ‘Context collapse’ Two traditional mindsets for data sharing Actively given Service using Buying ‘My data has financial value’ My health records for Open, vulnerable Financial transaction ‘ We’re all helping each other ’ Commercial my care Open, vulnerable mindset Commercial transaction ? mindset: mindset: “We are helping “My data has each other” financial value” Being Doing Existing in public space Data transaction Online banking Seeing your GP Loyalty cards Attending A&E Passively taken Social media Collecting prescriptions 4
Commercial access to health data Quantitative findings More support than oppose health data sharing for research To what extent, if at all, would you support your health data being accessed by commercial organisations if they are undertaking health research?* A nexus of related knowledge factors influence support % Strongly support 2 26% 13 18 53% Educational attainment: Social grade: % Tend to support Degree (59%) AB (62%) A-level (57%) C1 (53%) 13 % Neither support nor GCSE (52%) C2 (53%) oppose No qualifications (43%) DE (46%) % Tend to oppose Data usage awareness: Internet access: 35 19 Aware (56%-59%) Daily users (56%) % Strongly oppose Not aware (45%-47%) Less frequent (52%) No access (39%) % Don't know All percentages shown above are for combined ’A great deal/a fair amount’ responses. Base: 2,017 GB adults, aged 16+ *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 9
Commercial access to health data Permission Support for research without permission being sought Which of the following statements comes closest to your view of commercial organisations seeking to access this kind of anonymised health data?* B. I would rather this research happen, even if in some cases the NHS does not ask for permission from patients 17% 34% 36% Agree much more with B A. I would rather the than with A NHS ask patients’ 17% Agree a little more with B permission to share than with A anonymised data with Agree equally with both / commercial don't agree with either organisations, even if 12% Agree a little more with A 54% 18% than with B this means some of this kind of research does Agree much more with A than with B not take place Base: 1,043 GB adults, aged 16+ *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 18
Commercial access to health data What safeguards and conditions? Conditions for health data sharing with commercial organisations Which of the following conditions, if any, would you have in place before a commercial organisation, such as a drug company or medical technology manufacturer, could access NHS health data for research purposes?* 53% Strict rules that the data cannot be passed to third parties 52% All names/personal info removed from data before access 47% Sanctions/fines if companies found to have misused data 47% Storage of the data in a secure facility 43% Clear intent that research will lead to benefits for society 34% Approval from committee of ethics experts and academics Any use of data for marketing purposes is made illegal 32% Commercial orgs limited in profit they from the research 28% 3% I don't think any of these conditions are necessary I do not want commercial orgs to have access to health 17% data for research under any circumstances 1% Don’t know Base: 2,017 GB adults, aged 16+ *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 20
Commercial access to health data What safeguards and conditions? Conditions for health data sharing with commercial organisations Which of the following conditions, if any, would you have in place before a commercial organisation, such as a drug company or medical technology manufacturer, could access NHS health data for research purposes?* 53% Strict rules that the data cannot be passed to third parties 52% All names/personal info removed from data before access 47% Sanctions/fines if companies found to have misused data 47% Storage of the data in a secure facility 43% Clear intent that research will lead to benefits for society 34% Approval from committee of ethics experts and academics Any use of data for marketing purposes is made illegal 32% Commercial orgs limited in profit they from the research 28% 3% I don't think any of these conditions are necessary I do not want commercial orgs to have access to health 17% data for research under any circumstances 1% Don’t know Base: 2,017 GB adults, aged 16+ *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 20
Commercial access to health data No commercial access Those who do not want to see commercial orgs having access to health data fall evenly into two groups Which of the following views, if any, comes closest to why you do not want commercial organisations to have access to health data under any circumstances?* They cannot be trusted to store the data safely 20% I don't agree profit should be made from NHS data, even if 18% there are benefits Commercial orgs cannot be trusted to put society before profit 16% They might sell data onto another commercial org and you 13% cannot control where it ends up If commercial orgs access the data, they could manipulate it 8% and this is unfair 49% of people who were 8% They may try and market products and services to me asked this question aligned 6% There might be negative consequences for me or my family with reasons related to They may re-identify me even though names and personal things that could harm 2% information might be removed from the data them or their family 2% There might be negative consequences for the community 46% aligned themselves 2% Even if they misuse the data they won't be punished with social reasons; that 2% commercial orgs having Other health data could 4% Don’t know negatively impact society Base: All those who do not want commercial organisations to have access to health data under any circumstances (356) *See appendices for full question wording Source: Ipsos MORI/Wellcome Trust 22
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