Commercial access to health data Key findings April 2016
Recap of methodology 16 qualitative 8 x general public workshops 3 x GPs and hospital doctors 4 x long-term health conditions across GB, 246 1 x cohort members individuals Quantitative Quantitative research run as survey of 2,017 follow-up to qualitative work Face-to-face interviews GB adults 2
Qualitative context
Lots of initial uncertainty and wariness Lack of understanding around ?!? current data-use and sharing Most haven’t thought about Future private sector/academic/charities’ communication involvement in NHS challenges Individual-level data thought of as ‘my data’. Aggregate data as ‘statistics’ (instinctively more benign) Little knowledge of safeguards and how datasets are handled Most assume rules are in place 4
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Two traditional mindsets for data sharing 1. Commercial transactions: ‘My data has financial value’ Wary mindset Actively given Data is given as part Buying of a deal: consumer gets something in return Expectation it will Doing be used and shared for financial gain by the collector Passively taken 6
Two traditional mindsets for data sharing 2. Social contract mindset: ‘We’re all helping each other’ Actively given Open, vulnerable mindset Service using Data is given in confidence in exchange for a service, assumption it will be used for that purpose only Being Assumption that only high- level data is collected and for health purposes Passively taken 7
Commercial access to health data constitutes ‘context collapse’ Concern for Am I actively giving it? vulnerable groups, risk of exploitation Service Buying ? using Should I be a Should I be wary? helpful citizen? Doing Being Tendency to revert to assumptions and prejudices e.g. ‘private companies cannot be trusted’ Is it being passively taken? 8
What drives acceptability: four key tests More acceptable Less acceptable/red lines Mix of public 1. WHY Solely private Clear public and private benefit benefit benefit Uncertain future No link to 2. WHO For profit Public health users – e.g. improving but in health providers ‘sharing on‘ public health sector with third party Genetic Identifiable Aggregate 3. WHAT Aggregate data; personal details but risk of data, passively uncertain with real world jigsaw ID collected future uses implications 4. HOW Secure storage & regulation is assumed 9
The public can see opportunities 1. WHY Primary driver: without this, majority say Clear public data shouldn’t be shared benefit Public NHS, Charities, Academic researchers 2. WHO and partnerships involving them health providers Aggregate data, passively collected (i.e. no personal details ever attached) less Aggregate 3. WHAT risky data Secure storage Transparency, independent scrutiny, 4. HOW sanctions and fines for misuse reassure & regulation is assumed 10
But they also have concerns Mix of For some acceptable: WHO becomes 1. WHY public and more important – is the organisation private trusted? benefit e.g. analytics company working with For profit 2. WHO NHS. Some fears about ‘big pharma’ & but in health retail – makes regulation more important sector Aggregate If originally taken from identifiable data 3. WHAT - potential risk to the individual but risk of jigsaw ID Secure storage Doubts generally linked to WHO is 4. HOW handling the data and whether they are & regulation is trusted; regulation helps reassure assumed 11
…and some red lines If no clear public benefit, sharing is 1. WHY Solely private unacceptable to most benefit Insurance companies, marketing companies; never benefit public, No link to motivated by profit 2. WHO improving Uncertain future users – e.g. ‘sharing on‘ public health with third party Identifiable Concerns about impact on employment 3. WHAT personal details prospects, insurance premiums etc. with real world Genetic data; uncertain future uses implications Secure storage & 4. HOW No regulation/scrutiny to ensure data is regulation is used for intended purpose and not assumed passed on 12
Seven mindsets influence views Open to commercial interest Commercial access necessary for social Accepting of private sector involvement in development; public benefits worth risk to general personal privacy. Duty to share health data? Less concerned with public benefit, risks to society; Abstract neutral stance towards commercial orgs (including Concern for human rights, social marketing and insurance). Not worried/haven’t goods, and impact on everyone really thought about security risks. Fear large-scale negative impact on all society: Pragmatic Concerned with impact of privacy do not trust commercial orgs. ‘Big Brother’ at personal level society where commercial use of data worsens social inequality. Sceptical of commercial motives and coexistence Wary of commercial interest of public and private benefit. Lack faith in Sceptical of private sector involvement systems. Recognise benefits but commercial involvement is imperfect solution. Pro opt out. 13
Quantitative context
Awareness is an initial stumbling block to 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% Just a little Commercial 5 11 25 27 31 1 organisations Heard of, know nothing about Never heard of 18% 56% Academics 5 13 25 25 31 1 Don’t know researchers Base: 2,017 GB adults, aged 16+ *See report for full question wording Source: Ipsos MORI/Wellcome Trust 15
But 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?* Knowledge factors Strongly support influence support 2 26% 13 18 Tend to support Educational Internet access: 54% attainment: Daily users (56%) Degree (59%) Less frequent (52%) Neither support nor 13 A-level (57%) No access (39%) oppose GCSE (52%) Tend to oppose Data usage No qualifications 35 awareness: 19 (43%) Strongly oppose Aware (56%-59%) Social grade: Not aware (45%- AB (62%) Don't know 47%) C1 (53%) C2 (53%) DE (46%) Base: 2,017 GB adults, aged 16+ *See report for full question wording Source: Ipsos MORI/Wellcome Trust 16
Drug companies aren’t deal-breakers… [INTRODUCTION about public health regulator OR drug company running tests on a new drug] …On a scale of 1-5, how acceptable, if at all, do you find this use of data?* 5 - completely acceptable 4 3 2 1 - completely unacceptable Don't know Public health 32 22 30 7 7 2 regulator (1,020) Drug company 30 23 24 9 10 2 (997) Base: split sample, bases on chart *See report for full question wording Source: Ipsos MORI/Wellcome Trust 17
…but insurance and marketing purposes might be To what extent, if at all, would you support insurance companies using health data collected in the NHS to further develop their health insurance prices?* To what extent, if at all, would you support companies using health data collected in the NHS to help target health products at different groups of people?* 26% 44% Strongly agree Insurance 5 21 27 21 24 3 Tend to agree (1,025) Neither agree nor disagree 37% 36% Tend to disagree Marketing 10 28 26 18 18 1 Strongly disagree (992) Base: split sample, bases on chart *See report for full question wording Source: Ipsos MORI/Wellcome Trust 18
Support for commercial access if research at risk Which of the following statements comes closest to your view of health data being shared with commercial organisations?* B. The research should be conducted by commercial organisations if there is a possibility of new 2 25% treatments for diseases 13 being developed 31 Agree much more with 12 B than with A A. I would not want Agree a little more with commercial B than with A 61% organisations to have 14 access to anonymised Agree equally with both / don't agree with health data, even if this 31 either means the research Agree a little more with does not take place A than with B Base: 974 GB adults, aged 16+ *See report for full question wording Source: Ipsos MORI/Wellcome Trust 19
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