Dame Fiona Caldicott, national data guardian for health and social care, is calling for a further discussion with the public on the commercial relationships between the NHS and those wanting to innovate using patient data.
The call comes after more than a third of people in a new survey in England did not give their views on some of the ways the health service and patients could benefit from these partnerships, which aim to develop new technologies and medicines.
WHY IT MATTERS
The poll of over 2,220 people found that one in seven supported collaborations that resulted in access to the innovations created at less cost and improvements in patient care.
More than half of those surveyed also said it was “fair” that the partner university (58%) or private company (56%) made a profit from the discoveries made.
However, over a third did not agree or disagree with the NHS sharing in a profit with a university (36%) or private company (35%), which Dame Caldicott suggested could be the result of these issues not being “discussed enough” with the public.
ON THE RECORD
Dame Caldicott, whose role was put on a statutory footing in March this year, welcomed initiatives aiming to raise awareness, such as Understanding Patient Data. The taskforce recently commissioned research to identify people’s atittudes to partnership models between the NHS and those that want to use NHS data to develop new products and services, in collaboration with NHS England and the Ada Lovelace Institute.
“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,” Dame Caldicott said in a statement.
“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,” she added.
THE LARGER TREND
This week, the NHS saw the new unit for digital, data and technology, NHSX, be officially launched. At the Digital Healthcare Show in London last week, Tara Donnelly, NHSX chief digital officer, explained the thinking behind the creation of the new team:
“The idea is that rather than digital policy and strategy and delivery being in different places, they’ll be in one place. And importantly, NHS Digital, which is obviously a much larger organisation [the NHSX team will have around 300 members], will have a single commissioner rather than many different voices to respond to.”
Last month, health minister Nicola Blackwood also announced that a new funding mandate for health tech would be introduced in 2020, to be delivered through the Accelerated Access Collaborative, an organisation aiming to accelerate the uptake of innovations across the NHS.