Labour calls for halt to plans for GP data sharing
Labour’s Shadow Minister for Public Health and Primary Care, Alex Norris, has today written to NHS Digital and the Secretary of State for Health and Social Care asking them to stop the planned GP data collection until concerns about access to the data have been addressed.
Labour are also calling for a full public consultation on data sharing, and a public information campaign to ensure patients are aware of their rights and options.
Over the past few weeks, GP and patient organisations have raised concerns about the process including the lack of transparency about the organisations that will be able to request the data and its use.
Alex Norris, Shadow Minister for Public Health and Primary Care said:
“I echo concerns from across the health sector that the lack of transparency on which organisations can access this personal data is deeply concerning.
“Patients need to be made fully aware of which of their data is available for access and by whom, and so I have written to NHS Digital asking them to pause their upcoming GP data collection until these questions are resolved.”
FULL TEXT OF LETTER
To: Sarah Wilkinson, Chief Executive of NHS Digital
Cc: Matt Hancock, Shadow Secretary of State for Health and Social Care
Re: NHS Digital Data Sharing
I am writing to share my concerns about NHS Digital plans for personal medical histories to be shared with academic and commercial third parties through a database.
The benefits of collaborative planning and research have been made abundantly clear over the past year as the NHS, the wider health and social care sector, academia, the third sector, the private sector, and the public at large have all bound together to tackle the challenges posed by Covid. It is in this spirit that I fully support the principle of improved data sharing which is an important step towards planning and research improvements that will ultimately save lives through improved healthcare.
However, for data sharing to work, it must be built on trust. I share the concerns that have been voiced by the Royal College of General Practitioners (RCGP) and Doctor’s Association UK about the lack of communication with patients on this issue, and on the lack of consultation. Without consultation and clear communication with patients, trust in this process is undermined.
For these plans to be effective, and confidence in their doctors and the wider NHS to be maintained, it is vital that patients whose data will be shared have a clear understanding of this process.
I therefore seek reassurances about how these changes have been communicated to those whose data will be shared. In particular, I would welcome greater public communication on:
- Which aspects of patient data will be made available
- Which third-party organisations will have access to patient data
- How the use of patient data is limited
- What patients’ rights and the mechanisms to opt-out are
- The safeguards in place to protect confidential patient data
I share the opinion of the RCGP that for this to be effective requires be a centrally coordinated campaign from your organisation, rather than left to individual GPs, to ensure a consistent message.
Given the confusion and lack of transparency around this process, I believe that it is vital to delay the introduction of the General Practice Data for Planning and Research data collection until a public consultation and information campaign has taken place.
I would welcome a quick response that addresses the points above and that sets out NHS Digital’s plans to ensure that affected patients will be made aware of how their data will be used and their rights to opt-out if desired.
Alex Norris MP Shadow Minister for Prevention, Public Health and Primary Care