By Dr Katherine Morley, Dr Emily Finch, Ms Dee Cunniffe / London Joint Working Group on Substance Use and Hepatitis C

Hepatitis C is a blood borne virus that can cause cirrhosis, liver cancer and death. However, NICE approved treatments can cure the virus in around 95% of patients. The responsibility for testing people at risk of having hepatitis C, and treating people who are infected, lies across different services including GP practices, drugs services, prisons, pharmacies and hospitals.

In order to ensure that people at risk are tested, and that people with hepatitis C can access treatment, effective data sharing pathways must be developed between services. This report explores current barriers and solutions to join the dots and improve data pathways between testing, treatment and care for hepatitis C patients.

We identified two major obstacles to effective data sharing in relation to hepatitis C diagnosis and treatment:

  1.  Confusion about who data can be shared with and under what circumstances;
  2.  A lack of computer systems that enable care providers to easily share patient data. In particular, we found that obtaining written consent from patients was often considered the ‘best’, if not the only, basis on which data could be shared. This is at odds with the Health and Social Care (Safety and Quality) Act 2015 and General Data Protection Regulation, 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.

We made three recommendations to address these obstacles:

  1. Development of clear guidance and training for care providers, particularly those from community drug and alcohol teams, regarding:
    • when explicit patient consent is, and is not, needed to share data;
    • which data can be shared;
    • who data can be shared with and under what circumstances.
  2. Provision of additional support for hepatology outreach, particularly in community drug and alcohol teams, but potentially also in other community contexts such as pharmacies.
  3. Development of informatics solutions that help care providers to share data, via joint working of Operational Delivery Networks and commissioners.