News Focus
THANKS FOR
SHARING
Testing and treatment for
hep C may have improved,
but data sharing is lagging
dangerously behind, warns
a new LJWG report
NHS ENGLAND’S TARGET DATE TO ELIMINATE
HEPATITIS C IS 2025 – five years ahead of the
World Health Organization’s 2030 target. It’s
an ambitious objective, and one that the
NHS is confident it can meet. ‘We are
working, we are curing people, the strategy
is being successful,’ its clinical lead for hep C,
Dr Graham Foster, told last December’s
Seven years to elimination: the road to 2025
conference (DDN, February, page 12).
Delegates at the same event, however,
also heard the results of an evaluation
project by King’s College’s National Addiction
Centre on operational delivery networks
(ODNs) meeting their hep C targets. One of
the main obstacles identified was missing
data, frequently the result of providers
having different electronic patient record
systems – an ‘endemic problem across the
NHS’, according to the National Addiction
Centre’s Dr Katherine Morley.
THE IMPORTANCE OF EFFECTIVE
DATA SHARING
Now a new report from the London Joint
Working Group on Substance Use and
Hepatitis C (LJWG) is highlighting the
importance of effective data sharing
processes if the elimination target is to be
met. Treatment and testing for hep C has
improved dramatically in recent years, but
with more diagnoses happening at different
locations – drugs and outreach services, GP
surgeries, prisons – it’s crucial that
organisations have systems in place that can
process and share patient information
efficiently.
Eradicating the virus will only happen if
the many services engaged with people with
8 | drinkanddrugsnews | September 2019
‘It almost
seems as if
people feel
it’s better
not to
share so
you don’t
get in
trouble.’
Dee Cunniffe
hep C ‘join up their data systems so that
people who are diagnosed can progress
quickly and easily to treatment and care’,
said LJWG co-chair and clinical director of
South London and Maudsley NHS
Foundation Trust’s Central Acute and
Addictions Directorate, Dr Emily Finch. While
joining up data systems might sound fairly
simple, the reality is ‘not straightforward’,
the report states. Different organisations
have different IT systems and different
processes for sharing their diagnoses with
ODNs, treatment providers and Public
Health England (PHE). ‘These issues are
technical but they are absolutely vital in
making the system work for patients,’ it
stresses.
DISENGAGEMENT FROM TREATMENT
Most hep C testing is still carried out by
community drug and alcohol teams, and –
while some providers are moving towards
point-of-care testing – is usually outsourced
to either hospital or commercial
laboratories. While local authorities are
responsible for commissioning testing in
drug services, the responsibility for testing in
GP services lies with clinical commissioning
groups (CCGs). Responsibility for treatment,
meanwhile, lies with secondary care
providers and the ODNs, with NHS England
responsible for commissioning the drugs
used in treatment. This array of providers
and commissioners means there’s no single
data controller, and makes an easily
navigable pathway from diagnosis to
completion of treatment vital.
One key factor is the very real risk of
disengagement from treatment, co-author
and LJWG policy lead Dee Cunniffe, tells
DDN, making it ‘absolutely critical’ that
referral is as fast as possible. ‘People with
really complex needs often find services
difficult to access – that’s a given. The more
complex the needs, the more difficult it is
for them to navigate multiple venues,
multiple appointments, different people.
Really what you’re looking for is point-of-
care testing and getting your results as
quickly as possible at a place you attend
regularly.’
EXPLICIT CONSENT
While all the care providers interviewed for
the report had their own electronic medical
record (EMR) systems in place, specific
systems for storing, accessing, and updating
them varied ‘even within sectors’, it says.
EMR systems used by drug and alcohol
teams, GPs and hospitals were all different,
and even drug teams within the same
umbrella organisations often used different
EMRs. Data sharing is also not usually
automatic between these systems – for
example, between a hepatology department
and a drug service.
It’s not just the systems that are the
issue, however. Many people involved in
testing and treatment also remain in the
dark about which data can be shared, who it
can be shared with, and when explicit
consent is required to share it, the document
states. This confusion has been exacerbated
by the introduction of General Data
Protection Regulation (GDPR) and the 2018
Data Protection Act.
A CLEAR UNDERSTANDING OF REGULATIONS
Regulations regarding data sharing were
originally set out in the Health and Social
Care Act 2015, which specifies that health
and adult social care organisations have a
DUTY TO SHARE
Data sharing without explicit patient consent is permissible under
GDPR where sharing is for optimal patient care as this is a public
task and it is potentially problematic for other care providers not to
have this information. There is essentially a ‘duty to share’ where
this is for patient care and when it could be reasonably expected by
patients as part of that care.
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