NDG poll findings: public attitudes to organisations innovating with NHS data

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Dame Fiona Caldicott, the National Data Guardian for Health and Social Care (NDG) is calling for a public debate to shape the future of commercial relationships between the NHS, universities and private companies. She today releases the results of a poll on public attitudes to NHS organisations working with partners to use data to develop new medicines and technologies to improve health. The NDG commissioned the polling to inform her own priority setting for the coming year.

The poll of more than 2,220 people in England tested what the public thought would be fair when partnerships with universities or private companies result in valuable new discoveries that could be traded commercially. It presented a range of benefits that result from such partnerships, including improved care for patients, financial benefits for the NHS and profits being made by partner organisations.

The polling found strong support for the idea that NHS and patients should benefit from such partnerships. Around seven in ten approved of partnerships resulting in benefits such as access to new technologies at a reduced cost and improved patient care. Around half agreed that it is fair that a partner university or private companies make a profit, with slightly higher proportions supporting the propositions in which the NHS benefited financially. Among those who said they were already aware that such collaborations take place, there was stronger agreement that it was fair that partners and the NHS make a profit.

It was striking that significant proportions of respondents said they neither agreed nor disagreed with whether the range of benefits was fair. More than a third did not give views on questions about profits being made by partners or by the NHS.

The National Data Guardian believes this may be because these are issues that have not been discussed sufficiently with the public and that exploration and discussion with patients is necessary. She welcomes that a first step in this is being taken by Understanding Patient Data working alongside the Ada Lovelace Institute and NHS England to commission research to find out what people think and feel about different partnership models between the NHS and private companies wishing to use NHS data. She also welcomes work by the Office for Life Sciences to develop a framework to realise the benefits for patients and the NHS where data underpins innovation.

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