NHS patient data sharing plans need 'hard reset', warns BMA

The BMA has called on NHS Digital and the government to delay plans for a major data extraction programme, warning that a lack of publicity means patients may 'know nothing' about the plans.

Patients have until 23 June to opt out of the General Practice Data for Planning and Research (GPDPR) programme, with the data set to be extracted from GP IT systems from 1 July.

However, the BMA has argued that the ‘timeline is far too short’ and that NHS Digital ‘has not transparently and actively engaged the public’ to increase awareness around the changes.

The Labour party has also backed calls for the programme to be delayed. Shadow public health minister Alex Norris has written to NHS Digital to raise concerns - and said on Twitter that he shared 'concerns raised by patients, GPs and the health sector about the changes to data sharing'.

NHS patient data

The shadow minister said NHS Digital had serious questions to answer - including which organisations would have access to the data and for what purposes, the safeguards in place to protect patient data, and how patients choosing to opt out could be allowed not only to block sharing of future data, but to remove historical data from the collection. 

GPonline reported last week that at least three dozen GP practices would refuse to share patient data with NHS Digital because they had ‘not had enough time’ to inform patients and allow them to opt out.

The BMA and RCGP wrote to NHS Digital last week urging for improved communication with the public about the GPDPR - stressing the importance in maintaining public trust in how general practice uses patient information.

BMA GP committee executive team member and IT lead Dr Farah Jameel said that ‘unclear messaging’ from the government had left it up to overworked GPs to communicate the complex changes.

Duty to patients

She said: ‘Family doctors have a duty to their patients, and have their best interest at heart – so are understandably hesitant to comply with something that patients may know nothing about and that they themselves do not fully understand, even if this is a legal requirement.

‘With less than four weeks until the programme gets fully underway it’s clear that the timeline needs a hard reset. NHS Digital and the government must postpone the date of the first ‘extraction’ of data – scheduled for 1st July – until such time as the public are in full possession of the facts and are able to make a fully informed decision about what happens to their data.

‘Rushing through such fundamental changes to confidential healthcare data, losing the confidence of the public and the profession, will severely undermine the programme and threaten any potential benefits it can bring to healthcare planning and research.’

Dr Osman Bhatti, a London GP and chief clinical information officer for North East London CCG, said all 36 practices in the Tower Hamlets GP Federation had agreed they would not enable data sharing from 23 June.

Medical research

An NHS Digital spokesperson said last week: 'Patient data saves lives. We could not have delivered the COVID-19 vaccine rollout if we had not used data to ensure we reached the whole population, prioritising them in the most effective way. In the interests of patient safety it is important to learn lessons from the pandemic and modernise our practices.

'The new programme for collecting data has been developed in collaboration with doctors, patients and data, privacy and ethics experts to build on and improve systems for data collection.

'We continue to engage with the BMA and RCGP regarding GP Data for Planning and Research. We are exploring further options to expand our communications approach and remain committed to being transparent with patients and the public about the collection and use of data.

'We expect GPs to be ready to implement this new system from 1 July, which will provide benefits to patients across England and are ensuring support is in place to enable them to do this.'

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