|  Last week’s publication of the NHS care record guarantee (PDF 380K) assures
patients that their health records will be kept confidential when they
are added to the national electronic database that forms part of Connecting
for Health, the national programme for IT (PJ, 28 May, p637). However,
the question remains about exactly what data will be held on the new
care record, and how much access different health care providers will
have to it.
The NHS Care Records Service (CRS) will digitise over 50 million patient
records and will be implemented in stages, with the whole project due
to be completed by 2010. The national contract has been awarded to British
Telecom with local systems being provided by Accenture, the Capital Care
Alliance (led by BT), CSC and Fujitsu Alliance.
The care record will consist of a national database of basic patient
information, known as the “spine”, which will link to local
records holding more detailed information. Under current plans, the spine
will contain a summary of patient data, such as the patient’s name,
date of birth, any allergies and visits to accident and emergency departments.
More detailed information, such as scan results and medication lists,
will be held locally at the sites where the care is delivered.
What remains to be seen is exactly what data will be stored on the summary
record and what will remain in local records, and who will have access
to the different parts.
Lindsay McClure, head of information services
at the Pharmaceutical Services Negotiating Committee, notes that the
profession has been waiting to hear about access to care records since
the Department of Health published “A vision for pharmacy in the
new NHS” in 2003.
“The Government signalled that it would be consulting on elements of patient
information that community pharmacists may need to deliver appropriate
health care services as part of the new pharmacy contract,” she
says. “The PSNC has been involved in initial
discussions with the Department of Health on this issue. We
anticipate that the Department of Health will consult on this in the
future.”
David Pruce, director of practice and quality improvement at the Royal
Pharmaceutical Society, says: “The average community pharmacist
needs fairly wide access to information about patients’ conditions,
treatment plans and probably some test results. They may not need access
to everything for all patients, but you cannot predict the patients for
whom it is necessary to delve deeper to get an accurate picture of what
is going on.”
However, community pharmacist access in particular is likely to be more
limited than many pharmacists may hope, since one of the commitments
laid out in the care record guarantee states that information will only
be shared with other health care providers if it is needed for them to
play their part in the patient’s care (see Panel).
NHS commitments to patients outlined in the guarantee
The NHS care record guarantee promises the following:
· To give patients access to everything recorded about them
upon written request (whenever possible this will be free of
charge or at a minimum charge, as allowed by law)
· Only to share as much information as health professionals need
to know to play their part in patients’ health care
· Not to share patient identifiable data outside the NHS without
specific permission from the patient, unless the request is a
legal requirement or there is good reason to believe that not
doing so would put someone else at risk
· To get patients’ agreement before sharing information
with other bodies, eg, social services, and to discuss the effects
of not sharing this information if it will impact on health
· To give patients the right to choose not to have information
in their records shared
· To deal fairly and efficiently will questions or complaints
· To ensure that information is accurate (patients can apply
to have information amended or deleted if they are suffering
distress or harm)
· To make sure all staff understand their duty of confidentiality
· To make sure records are held securely
· To keep a record of who looks at patient records and provide
this if requested
· To take action if someone looks at a record without permission
or good reason, which may include disciplinary action, terminating
a contract or bringing criminal charges
The full guarantee (PDF 380K) |
Harry Cayton,
chairman of the NHS Care Record Development Board (CRBD) says that it
is therefore unlikely that community pharmacists will have
access to much clinical data, since it is not strictly necessary for
them to perform their job. However, what is likely to come out of the
Department of Health consultation are specifications for role-based access,
so that hospital pharmacists, for example, may have access to a wider
range of patient data than community pharmacists.
Ms McClure adds: “Different pharmacists will need different levels
of access. For
example, a pharmacist supplementary prescriber should have access to
the same level of information as any other prescriber, but a pharmacist
simply carrying out a dispensing role is unlikely to need access to all
information held on the patient’s record, for example, laboratory
results.”
Mr Pruce says: “The Society has been in discussions with Department
of Health representatives about the access that community pharmacists
would need and we look forward to responding to the Department of Health
when they decide to consult on the issue.”
Another commitment in the care record guarantee is that the patient will
be able to choose which care providers have access to their data. Therefore,
if they so wished, a patient would be entitled to say that they do not
want their pharmacist to have access to their records. This highlights
the importance of reinforcing the public understanding of the role of
the pharmacist in health care.
Ms McClure says that patients’ views on whether or not to opt out
of sharing their records with community pharmacists are likely to depend
upon the relationship that they have with them and their understanding
of pharmacists’ need for information about them in order to support
their care.
“All community pharmacists will have a role to play in explaining how
information about patients will be used responsibly within the community
pharmacy setting and in helping to build public confidence in community
pharmacy access to the CRS,” she says.
“As part of the PSNC’s work to raise awareness of the new contract,
we have been working with patient groups to increase their understanding
of the pharmacist’s changing role and the importance of access
to information to support patient care. Over the next few months, we
will be continuing to work with patient groups on this issue.”
A conference hosted by the British Medical Association last week discussed
the implications of the care record guarantee. Concerns were raised about
how it may impact on patient care. Many of these concerns apply not only
to general practice, but also to pharmacy and the other health professions.
For example, in order to be able to see a patient record a health professional
must be able to demonstrate that he or she has a professionally “legitimate
relationship” with the patient. The conference was concerned about
whether there will be an expiry time on this relationship. For example,
a locum would need access to the patient records for the period for which
he or she was employed, but this access would need to expire once the
locum moved on.
Electronic transfer of
prescriptions — progress
continues
Electronic transfer of prescriptions is progressing, says Lindsay
McClure, head of information services at the Pharmaceutical Services
Negotiating Committee. She says that the initial implementer sites
that have gone live are giving NHS Connecting for Health the opportunity
to study the impact that electronic prescriptions have on prescribing
and dispensing processes so that changes can be made to the model
where necessary before ETP is rolled out nationally. National roll
out of ETP is still expected to start over the summer.
“The NHS Connecting for Health ETP team have confirmed that they will
be issuing guidance on the compliance status of systems in the
near future,” says Ms McClure. “We would encourage pharmacy
contractors to take time now to learn about the national programme
projects that will impact on their practice in the future and investigate
different options that may be available to them from different
system suppliers. As soon as the necessary information is available
on the
ETP implementation plan, the PSNC will be able to progress to agreeing
the new contract ETP payments with the Department of Health.”
According to Ian Cowles, group director of implementation, NHS
Care Records Service, Connecting for Health, about 9,700 ETP transactions
have taken place to date. Speaking at the BMA conference, Mr Cowles
said that elsewhere in the IT programme, electronic booking services
are now rolling out into the NHS community, with about 1,000 electronic
bookings made so far. There have been about 200 initial implementations
of the NHS Care Records Service into trusts, and about 7,000 connections
to N3, the national network replacing NHSnet. |
Focus should be on patients
Speaking at the BMA conference, Richard Granger, chief executive
of Connecting for Health, said that although some of the aspects
of Connecting for Health have been delayed, others have been
delivered on time, and some have been completed that were not in
the plans
to start with.
He noted that much of the public interest in the programme now
quite rightly surrounds the patient care record guarantee, rather
than
focusing on the technology itself. “Things will go wrong with
the plumbing occasionally,” he said. “We need to focus
on what we are going to deliver for patients and how it is going
to be used by people who work in the NHS.”
He added that despite speculation to the contrary, the national
programme for IT has not gone over budget. “I have not gone back to ministers
or the Treasury for any additional funding,” he said. “We
are spending exactly what we said we would.” |
The definition of a “legitimate relationship” also
needs to be established. Trainee doctors and pharmacists currently use
patient
notes for training purposes and case studies. Will this access continue
to be permitted?
According to an earlier Which? report, about two thirds of people
would be happy for all of their information to be held on the national
database
as long as it was secure. About 8 to 10 per cent of people said they
would want absolute control over access to their records and 1 to 2 per
cent said they would opt out completely. The Department of Health has
pledged to explain the possible consequences of opting out of the CRS
completely, but professionals are still concerned about what safeguards
will be put in place to limit the extent to which these people will be
disadvantaged.
How care records will be integrated with the private sector is another
issue health professionals would like clarified, since many patients
receive treatment from both sectors.
If patients can opt to hide selected information on the record from their
health professionals, will health professionals be able to hide information
from the patient? One GP mentions that he frequently makes notes not
intended for the patient to see, and is concerned that to continue working
in this manner he will have to start a separate,
private record to hold such information for himself. It has also been
questioned whether an incomplete patient record creates safety issues
of its own.
It is not yet clear whether pharmacists will be able to upload information
onto the record as well as download it. Ms McClure says: “We believe
that, where appropriate, pharmacists should have both read and write
access to the records. For example, if a pharmacist carries out a medicines
use review, it would improve patient care and joint
working if the pharmacist could upload a summary of the review to the
patient’s care record so that other health professionals can access
this information at the touch of a
button.”
A situation could potentially arise in which a pharmacist is in possession
of some information that the patient does not want the doctor to see.
Will pharmacists have the same right to “hide” information
as doctors are likely to?
There are also a number of legal issues that health professionals would
like clarified, such as whether consent to upload information onto the
spine is implicit if the patient does not actively object.
Since implementation of the CRS is at such an early stage, the majority
of these questions do not yet have an answer. So much depends on what
the content of the care records will be.
Mr Cayton says that other issues the CRDB is addressing include how the
records will cater for people who move across the home countries, those
in prison or the armed forces, issues surrounding childrens’ records,
and those who have additional security needs such as victims of domestic
violence.
Pharmacists must now wait for the Department of Health’s consultation
on role-based access to find out what implications the new databases
will have for pharmacy and thus for the care of patients.
Mr Pruce adds: “In the meantime we need to be able to explain to
patients why pharmacists may need access and what benefit it can bring
them.” |
The
Pharmaceutical Journal