Simon Denegri blog

Patient data is all about asking questions


Simon Denegri OBE, NIHR’s National Director for Patients, Carers and the Public.

Date: 19 October 2018

It would be difficult not to spend a day in an NIHR facility or with one of our researchers and for the conversation not to turn to the issue of health and care data.

The reason is simple. A great deal of the research we fund today uses health and care data in one way or another to answer questions about how we can improve people’s health. And the future of health research is bound up with how we can better use this data.

For example this month NIHR-funded researchers at the University of Bristol published the results of a study based on prescribing data which looked at the impact on the NHS and patient of gluten free foods. While another study, supported by the NIHR School for Primary Care Research and published in July, used anonymised patient data to look at the benefits of newer coagulants.

If you are one of the thousands of patients, carers and the public who work with the NIHR then you will likely have some appreciation of this already. Since we were established in 2006 our public contributors have shaped and been involved in decisions on all our work including that which uses data. Many will be part of advisory groups on research projects using data.

It’s their questions that get to the heart of the matter from a public perspective. And as anyone who has sat with them on one of our panels will tell you they rightfully expect straight answers if they are to support a proposal.

Earlier this year, the NIHR and Health Research Authority (HRA) published the results of a public attitudes survey, which suggests that the public have growing confidence that their data would be held securely if asked by a doctor to take part in a health study.

80% of people said they would have confidence in the survey compared to 72% in 2013. The numbers of people who said they would not be confident has dropped from 26% to 17% in the same timeframe. It should be noted that this lack of confidence is highest among ethnic minorities.

I suspect that one of the reasons we have seen growing public confidence about the use of health and care data is that we are now having a more open debate about the issues, and that the NIHR and other organisations are getting better at answering people’s questions - thanks to our public contributors.

But just as the seasoned public speaker learns never to assume that their audience has any knowledge of the subject, so we must constantly look to re-tell the story of why using health and care data is so important and to be clear and consistent in the information we provide. And as the survey data shows, we also need to do more to reach out to communities and groups for whom the sharing of data is particularly sensitive.

And that’s why the roll-out of the national data opt-out programme in June was such an important initiative from a public perspective. For not only is it about giving everyone a choice about what happens to their confidential patient information, but is also about encouraging people to seek information and ask questions so we are all more informed about the issues. And organisations like the NIHR must be ready to address them.

We have set out on our patient data pages why health and care data is important to NIHR research. We hope they will answer the questions you have. But we always welcome your feedback and thoughts on how we can improve them for the next visitor.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.
  • Summary:
    Following the roll-out of the national data opt-out programme, Simon Denegri OBE reflects on the opportunity this provides for public debate.
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    Simon Denegri OBE, NIHR’s National Director for Patients, Carers and the Public.

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