New report calls for organisations involved with hepatitis C testing, treatment and care to improve data sharing

With organisations across London coming together to eliminate hepatitis C in the Capital, the LJWG is calling on drugs services, outreach testing services and hospitals to review and improve their data sharing processes.

The new report, ‘Joining the Dots: Linking pathways to hepatitis C diagnosis and treatment’, highlights that, with people being diagnosed with hepatitis C at various different locations such as at a drugs service, prison, GP practice, or outreach service, it is crucial these organisations have systems that can process and share patient information efficiently. Effective data sharing is essential to ensure that people receive timely care and so that progress towards eliminating hepatitis C can be checked.

Based on interviews with Caldicott Guardians, Information Governance specialists, and clinicians, the report has found that many people delivering hepatitis C testing or treatment do not understand which data can be shared, who with, and when explicit consent is necessary for data sharing. The introduction of GDPR regulations and Data Protection Act 2018 has exacerbated this confusion. The report calls for the development of clear guidance and training for care providers, particularly to raise awareness of the fact that patient data may be shared for direct care purposes without explicit patient consent.

Dr Emily Finch, Clinical Director, Southwark, Central Acute and Addictions Directorate, South London and Maudsley NHS Foundation Trust, and co-chair of the LJWG said:

“We have an incredible opportunity to find and treat people with hepatitis C, and to eliminate the virus as a public health issue in London, but this will only happen if the many services and organisations that are engaged with people with hepatitis C join up their data systems so that people who are diagnosed can progress quickly and easily to treatment and care.

This report will be useful to any organization involved in providing hepatitis C testing, treatment or care. I hope it will initiate many to review their processes and protocols for data sharing, to ensure these facilitate easy pathways into treatment and allow for data flows that will be to the benefit of every patient.”

Please read the full report here and contact for more details.