YouGov survey reveals willingness for patient data to be shared
- 12 June 2019
More than seven in ten people surveyed said they were happy to have their annoymised personal health data shared so long as it was used to benefit others.
The research, carried out by YouGov and funded by Oxford-based health technology business Sensyne Health, involved more than 2000 adults.
The results revealed 71% of people were happy to share their data so long as it is made anonymous and unidentifiable, combined with that of other people and benefited those living in the community.
While the majority of those questioned appeared happy to have their anonymised data shared for the good of others, 70% of people said they would not be happy for the analysis of anonymous NHS patient data to be undertaken by a multinational ‘big tech’ company.
In addition, 13% think such companies can be trusted to handle anonymous NHS patient data in a confidential manner.
Rachel Power, chief executive of the Patients Association, said: “There’s little doubt that new technologies will play a part in delivering care in future, and the results from this study confirm that most people support the use of anonymised patient data for medical research purposes.
“There is also widespread support for data to be safeguarded and analysed in the UK – and the Patients Association agrees that data should be used only for research purposes, and never accessed or used inappropriately.
“The sharing of patients’ information between care institutions is essential to delivering joined-up care that works for the patient, and it is vitally important that this is done – with all appropriate safeguards, to ensure that sensitive information remains confidential.”
The issue of trusts sharing patient data with third parties has proven to be a contentious one.
The Royal Free London NHS Foundation Trust signed a deal with DeepMind and Oxford University Hospitals NHS Foundation Trust, George Eliot Hospital NHS Trust and Wye Valley NHS Trust all have a partnership with Sensyne Health.
However NHS England chief executive, Simon Stevens, confirmed recently that trusts have been told not to do “individual side agreements” to “ensure data is being used safely”.
7 Comments
How can the data be anonymous? It needs to be identifiable in order for it to be linked. And if you’re going to anonymise it after you’ve done with it what you wanted to do with it, then what’s the point of data protection?
Of course its feasible to advise people about what you’re going to do with their data. You’ve got to collect the data from them in the first place – that is when you advise them and seek consent.
And whilst you could argue that people shouldn’t get a choice about what happens to their data in research, the fact is they do get a choice. What needs to happen is for it to be included in a set of terms and conditions when you consent to a medical process or procedure in the first place (much like to agree to T&Cs when beginning a relationship with any other organisation).
Data is rarely anonymous especially when you consider the level of detail required for research and given the NHS history on respecting the rights of individuals, there is a lot of blind faith in the NHS. This % will only decrease.
That means 29% of people (nearly a third) are not happy about their anonymised data being used for research. How can these people be reassured that their data will not be used?
They can’t. It’s not feasible to notify each individual. More importantly I’d like to know why these people would be against fully anonymised data being used. Also, fully anonymised data is not confidential and is already currently shared with anyone who wants it. And more importantly, it’s this data that is used to further medical research and improve care and treatment, so I would argue that people should not get a choice about fully anonymised data being used.
2,000 people – para two.
71% of how many
2081 adults took part – copy has been updated!
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