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 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.’
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 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.
Sharing data as part of clinical practice
This is ‘at odds with’ the Health and Social 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.’