Asked by
To ask Her Majesty’s Government what assessment they have made of
the plans by NHS Digital to collect primary care medical records;
and in particular, the arrangements for (1) patient consent, and
(2) the sharing of patient data with third party organisations.
The Parliamentary Under-Secretary of State, Department of Health
and Social Care () (Con)
My Lords, data saves lives. We have seen that in the pandemic,
and it is one of the lessons of the vaccine rollout. The GP data
programme will strengthen this system and save lives. That is why
we are taking some time to make sure it is as effective as
possible, so the implementation date will now be 1 September. We
will use this time to talk to patients, doctors and others to
strengthen the plan, to build a trusted research environment and
to ensure that the data is accessed securely.
(Con)
[V]
My Lords, I am very grateful for the Minister’s reply, especially
hearing that this is all to be put back until 1 September. That
is a very good decision, because we have heard that patients have
not been able to get their GP to accept the information on the
form for them to opt out of the proposed system. The system is
not working at the moment, and we are very concerned. There was a
thought that the system would be anonymised, but that is not what
is proposed. It is pseudo-anonymisation, with NHS Digital having
the capacity to identify individuals. There is no capacity for
people to unanonymise. It needs a really thorough rethink. I very
much congratulate—
(Con)
Could I ask the noble Baroness to ask her question?
(Con)
I am enormously grateful for the noble Baroness’s endorsement of
our decision to delay the rollout. As the absolute epitome of the
patient safety cause, she knows more than anyone the importance
of data to that cause. I completely endorse the points she made.
My Lords, informed consent is at the heart of good patient care.
Can the Minister tell us what plans Her Majesty’s Government have
to inform patients that they have the right to opt out of having
their personal medical information collected in this way? How
will this be advertised?
(Con)
My Lords, engagement with the Royal Colleges, the BMA and GPs on
a one-to-one basis has brought about a system that has a national
data opt-out and a tier 1 opt-out with GPs. This is fully
explained in all our materials and there has been a campaign to
raise awareness among patients. We are taking a brief pause to
ensure that patients have almost as much time as they could
possibly have to make the decisions they would like to make. That
is a wise decision in the circumstances.
(Lab)
[V]
My Lords, by coincidence, I received a text from my GP surgery
yesterday inviting me to click on a link if I wished to opt out
of having my data shared. I do not. Does the Minister agree that
data sharing plays a vital role in advancing diagnosis and cures
for a range of diseases and illnesses? Of course we need to
ensure that there is public trust on anonymity. Can he give us
more information on that and on cybersecurity?
(Con)
I am grateful for the noble Lord’s anecdote. It is no coincidence
that he got the text yesterday. We have energetically promoted
this opportunity to patients and we are grateful to those who
have engaged. He is entirely right. Patient data played a
critical role in the development of the shielding list during
Covid, in the recovery clinical trials programme and in the
vaccine priority list. Clinical data is essential for patient
safety. That is why we are modernising the system by which we
access it.
(CB) [V]
My Lords, the choice on the opt-out preference form is either:
“I do not allow my identifiable patient data to be shared outside
of the GP practice for purposes except my own care”,
or:
“I do allow my identifiable patient data to be shared outside of
the GP practice for purposes beyond my own care.”
The big question is: what is identifiable? For some people with
disability, mental health and/or trauma histories, data might be
easily identifiable. I knew nothing of this until last week. I
await with interest the noble Lord’s reply.
(Con)
The nature of the data is very explicitly described in the
documents that the noble Baroness will have referred to. If she
likes, I would be very happy to send her a full set of details.
Of course, many patients have engaged with the process and, like
the noble Lord, Lord Young, have made the wise decision to remain
enrolled in the system.
(Lab)
My Lords, my honourable friend Jon Ashworth called for this delay
yesterday in the Commons. It is not often that we can say thank
you to the Minister at such short notice, but it is very welcome
that the Government have agreed to this delay. The eighth
Caldicott principle—I assume that the Minister is aware of the
principles—makes it clear that it is important that there are no
surprises for the public around how confidential information
about them is used. If GP data can be used by a third party, be
they public or private, how will that principle be fulfilled?
(Con)
My Lords, I am grateful to the noble Baroness for her kind
remarks. As she knows, there is an incredibly rigorous system for
ensuring the safe curation of this data, and I pay tribute to the
Caldicott Guardians, the ICO and the IGARD board, which has put
in place a very tough and rigorous surveillance system to ensure
that all the data sharing that goes on within the NHS complies
with the legal requirements and the guidelines laid down by law
and by the NHS. These are tough conditions and they are applied
very rigorously.
(LD)
[V]
My Lords, it is a relief to hear that there will be a delay, but
I am astonished that the Government have left it this late. When
will the data protection impact assessment for this be published,
and will the Minister place a copy of the DPIA in the House
Library, so that Members can read NHS Digital’s own statements
about the privacy risks and the impact of the programme? It might
help the ICO in its deliberations about whether the system
proposed is safe.
(Con)
I am grateful for the question. I will look into that date and
share whatever materials are available.
(Lab)
My Lords, I am fully behind the sharing of information, for the
reasons that the Minister explained. But does he agree that to
ensure public confidence, the Government have to do something
about the current clunky opt-out approach that they have taken
and make it easier, and publish the names of the companies to
whom this information will be given and what they are paying for
it? The Government must not hide behind commercial
confidentiality. We as patients have an absolute right to know
this.
(Con)
My Lords, I agree with the noble Lord that the opt-out system
deserves to be looked at. We are undertaking a review of the
opt-out system to streamline it along the lines that he
described. However, he peddles a slightly false impression. There
are extremely detailed considerations in the IGARD minutes,
available online—39 pages from the last meeting—which go into
great detail on the arrangements for the sharing of each piece of
data. On payment for the data, I remind him that—as I am sure he
already knows—these are payments for costs and not payments for
any kind of charge. All data is shared for very strict reasons to
do with research and planning. There are no other reasons for
sharing the data.
(CB)
My Lords, we urgently need better flows of clinical data between
different parts of the NHS, but the public are understandably
anxious, given the well-publicised data leaks and thefts of
recent years, and particularly given that the proposed scheme is
not limited to the NHS but includes external third-party
commercial enterprises. Why have the Government done so poorly at
explaining to the public the need for such information flows and
the health benefits that they bring? Why have they not, at least
in the first instance, constrained the sharing of data more
narrowly, in order to build up the necessary degree of public
confidence?
(Con)
My Lords, I contest the premise of that question. I have not had
a single complaint from anyone who has had the vaccine or been on
any prioritisation list for the vaccine. Tens of millions of
people have had it and they embrace the fact that their clinical
data was used to roll out the vaccine. I accept the noble and
gallant Lord’s point on explaining. We can do more to explain to
the public. We want to engage the professions and the public in a
story about how they can use their clinical data more
emphatically. On the way in which the data is shared, it is
already extremely tightly controlled. I would be glad to go
through that with the noble and gallant Lord if that would be
helpful.
