Public need to know how patient records are used, including by commercial organisations

The Wellcome Trust commissioned Ipsos MORI to carry out a major piece of social science research, including workshops with over 200 people and a survey of 2,000 people. The research, published today, aims to inform a review that Health Secretary Jeremy Hunt has asked Dame Fiona Caldicott, the National Data Guardian, to conduct.

The findings of the Caldicott Review, which are expected imminently, will provide advice on the wording for a new model of consents and opt-outs, to enable patients to make an informed decision about how identifiable information in their health records is used.

Most strikingly, the Ipsos MORI research has re-emphasised just how unaware many people are about how patient data is already used within in the NHS, let alone by others such as academic researchers, charities and commercial organisations. This finding suggests that in order to have a trusted system for patient data use it is absolutely crucial that there is honest and open communication and engagement with the public about how their health data could be used for purposes beyond their care, and what safeguards are in place.

The survey results reveal that a slight majority (53%) of people support the idea of patient data being used by commercial organisations for research. Examples that survey respondents tended to support included, a drug company running tests on an approved drug to test unwanted long-term side effects and health data being accessed by commercial organisations for the purposes of developing new treatments for diseases.

In the workshops, views varied significantly depending on the type of organisation. Participants considered academic researchers, charities and organisations working in partnership with the public sector the most acceptable users of health data, as it was felt that they would be working in the public interest.

In general, participants used four key tests in order to judge the acceptability of a company accessing data. The company had to pass all the tests to be acceptable to them:

• WHY Is it for a particular public benefit and not just private profit?
• WHO Can the people using my data be trusted to produce a public benefit?
• WHAT Am I giving sensitive data? Could it be linked back to me?
• HOW Are there safeguards in place to keep my data private and secure? 

For example, sharing data for the purposes of marketing and insurance tended not to pass the first and most important test – why the work is being done. In the qualitative work participants were wary of insurance and marketing companies using anonymised health data, for example, a private health insurance company using anonymised hospital records to help refine their premiums for critical illness cover. In these scenarios these companies were seen to be acting against the interests of individuals, motivated by their own private interest, and leading to little or no benefit for the public. 

Similarly in the survey, only 26% supported sharing anonymised health records with insurance companies to help them develop their pricing. A slightly higher 37% supported marketing companies having access to this data, but this figure is still lower than it is for some of the other types of companies. 

The research suggests that public confidence in the system would be strengthened if insurance and marketing uses of patient data were not allowed. Such a ban would need to be communicated clearly to people.

Lastly, the survey uncovered a significant minority of people (17%) who object to commercial organisations having access to health data under any circumstances. This strongly indicates that there should be an opt-out available for those who do not wish their health data to be used in this way.

Nicola Perrin, Head of Policy at the Wellcome Trust, said: "We commissioned this research to get a more in-depth picture of people's concerns about commercial access to health information. Knowing more about what restrictions people want to place on patient data use should make it easier to design a system that people can trust.

"People are naturally cautious about the complexities and sensitivities surrounding their personal information, especially where these may not have been fully explained to them in the past. This research showed that in order for people to support this system they need – and want – to know much more about it, and there must be an opportunity for them to opt out. We must make sure that there are no surprises for people about how their data could be used, especially by commercial organisations, and to do this it is critical that the government, the NHS and researchers work together to communicate and engage the public."

Simon Denegri, Chair of INVOLVE and National Institute for Health Research (NIHR) National Director for Patients and the Public in Research, who was on the advisory group* for the research said: "A better understanding of what people think about companies having access to health records should allow us to build a system which the avoids notable past mistakes, when people have understandably felt uncomfortable about how their data is being used. In order for a new approach to data sharing to be trusted by the public we must respect the views of individuals. As this research has shown, people want to be consulted. This means being clear about why different organisations are granted access and for what benefit, providing accurate information, giving the choice to opt out, and recognising their decisions as valid and well-informed."

Sarah Castell, Head of Public Dialogue at Ipsos MORI, said "Public and patient views were very consistent across the workshops and also chimed with the survey responses. The most important thing the public wanted to see in commercial access to their data was a clear public benefit. We saw a notable level of enthusiastic engagement with the subject at our workshops and an increase of trust the more people knew about the subject."

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