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Poll shows support for NHS sharing data for research


Most of the public in England see benefits in the NHS sharing data with partner universities and companies, according to newly published results of a national poll.

Carried out for the national data guardian for health and social care (NDG), Dame Fiona Caldicott, it also showed that more than half believe the NHS should share in the profits from any medicines or technology developed.

The poll of 2,201 people in England was carried out in April and early May by Kantar, using internet omnibus survey OnLineBus. It focused on two questions, on whether people were aware of the NHS sharing patient data to develop new medicines and technologies, and whether they agreed with a series of statements about the fairness and benefits of the relationships.

It found that 73% agreed that the NHS should benefit in ways such as obtaining access to new technologies or medicines at a reduced cost; and a 77% agreed the main benefit for patients is in improved care and treatment.

There was also support for the idea that the NHS and patients can benefit from partnerships with universities and companies, and that the latter should be able to make a profit. 49% said this was fair for a partner university and 51% for a private company.

Only a minority – 9% and 13% respectively – were against the idea, with the remainder not having a strong opinion either way.

Need for discussion

Caldicott said this may be because these are issues that have not been discussed.

She welcomed a first step, however, in the form of research commission by NHS England and the Ada Lovelace Institute to discover what people feel about different types of partnerships in using health service data.

Among the other findings were that more than half agreed it is fair that the NHS sharing in a profit with a partner university (58%) or private company (56%), and exactly half were happy with the idea of the NHS receiving a one-off payment from the partner for using data.

Caldicott (pictured) said: “Great benefits can be reaped for all of us if we can use the rich information that is held by the health and care system safely, carefully and with the agreement of the public and patients.

“The NHS cannot do this alone. We need to work with universities and the private sector to find new medicines, develop cutting edge technologies, uncover insights from our data.

“Some of the public clearly are beginning to have views about how benefits from patient data can be shared for the benefit of the NHS. Supporting and extending this public conversation is crucial if we are to gain from the rich information held safely in the health and care system and retain public trust.”

Image from GOV.UK, Open Government Licence v3.0

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