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.”
ENDS
Notes to editors:
FULL TEXT OF LETTER
To: Sarah Wilkinson, Chief Executive of NHS Digital
Cc: , Shadow Secretary of State for Health and Social Care
Dear Sarah,
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.
Yours sincerely,
,
Shadow
Minister for Prevention, Public Health and Primary Care
