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Home > Joining the Dots. Linking pathways to hepatitis C diagnosis and treatment.

Morley, Katherine and Finch, Emily and Cunniffe, Dee (2019) Joining the Dots. Linking pathways to hepatitis C diagnosis and treatment. London Joint Working Group on Substance Use and Hepatitis C.

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Patients, their families, clinicians and addictions workers are all excited about the opportunity we now have to cure people of hepatitis C and eventually to eliminate the disease as a public health threat. However, this will only be possible if the many services and organisations that are engaged with people with hepatitis C, and people who are at risk of contracting hepatitis C, join up their data systems so that people who are diagnosed can progress quickly and easily to treatment and care.


This sounds simple, but the reality is not straightforward. People may be diagnosed with hepatitis C at a drugs service, prison, GP practice, or other outreach service. These organisations will have different IT systems and processes for sharing diagnoses with Public Health England, local treatment providers and the local Operational Delivery Network. Further, interpretations of the new General Data Protection Regulation (GDPR) and associated Data Protection Act 2018 (DPA18) regulations have led to confusion in some organisations about data sharing and consent, even though GDPR and DPA18 do not alter the requirements of the Health and Social Care (Safety and Quality) Act 2015 for health and social care organisations to share data that facilitates patient care.


These issues are technical but they are absolutely vital in making the system work for patients. I am pleased that this report shines a light on some areas of confusion and misunderstanding, and makes recommendations for a more streamlined, coordinated approach to data sharing. Whilst many of the insights and recommendations in the report apply to other areas of healthcare, all of the interviews and discussions that provide the basis of this report were specifically hepatitis C related.


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

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