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Information sharing pathways between care
providers involved in hepatitis C testing and
treatment (left): The arrows indicate the flow
of information to and from the different care
providers that is needed to ensure successful
testing and completion of treatment.
Source: ljwg.org.uk
legal obligation to share patient information
with each other in order to provide the best
care possible. While GDPR and the Data
Protection Act do not actually alter the
requirements of this in terms of sharing
data to facilitate care, many people are
unaware or unsure and tend to very much
err on the side of caution.
Clinicians, information governance
specialists and Caldicott Guardians – the
people responsible for protecting the
confidentiality of personal health and care
information and ensuring that it’s used
properly, and which all NHS organisations
are required to have – were all interviewed
for the report. While the Caldicott Guardians
and information governance personnel had
a clear understanding of the basis on which
data could be shared, this had not
‘penetrated all levels of clinical practice’, the
report found. Many people believed that
obtaining written consent from patients was
the ‘best’ – or only – basis on which data
could be shared.
‘It wouldn’t
take much
to get
those
messages
out there’
SHARING DATA AS PART OF
CLINICAL PRACTICE
This is ‘at odds with’ the Health and Social
OBSTACLE RECOMMENDATION
Lack of clarity
regarding sharing
patient data under
GDPR Clear guidance and training for care providers, particularly CDATs, regarding:
• when explicit consent is, and is not, necessary for data sharing;
• which data can be shared;
• who data can be shared with, and under what circumstances.
This could be provided by ODNs and/or PHE.
Lack of informatics
to facilitate data
sharing ODNs and commissioners should work together to find informatics solutions
to facilitate data sharing between local care providers, including third sector
organisations where relevant.
Lack of resources to
support HCV testing
and treatment Additional support for hepatology outreach, particularly in CDATs but
potentially also in other contexts such as pharmacies.
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Care Act and GDPR, the report points out,
which ‘create an obligation to share data for
patient care and provide a legal basis for
doing so that does not require explicit
patient consent’. This confusion and anxiety
about what sharing is or isn’t permissible
means that information often ends up not
being shared at all, even when it would
clearly be in the best interests of patients.
‘When we spoke to the Caldicott
Guardians and the information governance
people the overall feeling was, “We don’t
understand why people are doing this,”’ says
Cunniffe. ‘People need to talk to their
Caldicott Guardians and IG leads and ask
these questions. I think senior managers
could do with doing it as much as anybody.’
The focus should not be on consent as
the ‘sole legal basis for sharing and
processing patient data,’ the report
continues. ‘GDPR has specific allowances for
sharing data as part of clinical practice, both
in terms of delivering care and
administrative work, that do not require
explicit consent.’ LJWR wants to see the
development of clear guidance and training,
particularly for drug service staff, around
when explicit consent is needed, which data
can be shared, who it can be shared with
and under what circumstances. This could be
provided by PHE or the ODNs.
‘Ever since the LJWG was established
there’s been times when people will say “we
can’t share that”, then you’ll go to another
area and they will,’ says Cunniffe. ‘When we
started up our pharmacy testing project
(DDN, June 2018, page 5) we found that
people are just really edgy about sharing
data with each other. It almost seems as if
people feel it’s better not to share so you
don’t get in trouble.’
Ultimately, a lot of these issues could be
solved by effective training, she says. ‘I think
there’s a real need for organisations to stand
up and tell their staff, “Look, you’re OK – you
can do this.” It wouldn’t take much to get
those messages out there. But we need
organisations to take a lead on it.’ DDN
Recommendations (left): In light of the
findings from this report, LJWG make three
recommendations for potential strategies to
overcome the obstacles they have identified.
Source: ljwg.org.uk
September 2019 | drinkanddrugsnews | 9