Drink and Drugs News DDN September 2019 | Page 9

More on hepatitis C at www.drinkanddrugsnews.com Information sharing pathways between care providers involved in hepatitis C testing and treatment (left): The arrows indicate the flow of information to and from the different care providers that is needed to ensure successful testing and completion of treatment. Source: ljwg.org.uk 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. ‘It wouldn’t take much to get those messages out there’ SHARING DATA AS PART OF CLINICAL PRACTICE This is ‘at odds with’ the Health and Social OBSTACLE RECOMMENDATION Lack of clarity regarding sharing patient data under GDPR Clear guidance and training for care providers, particularly CDATs, regarding: • when explicit consent is, and is not, necessary for data sharing; • which data can be shared; • who data can be shared with, and under what circumstances. This could be provided by ODNs and/or PHE. Lack of informatics to facilitate data sharing ODNs and commissioners should work together to find informatics solutions to facilitate data sharing between local care providers, including third sector organisations where relevant. Lack of resources to support HCV testing and treatment Additional support for hepatology outreach, particularly in CDATs but potentially also in other contexts such as pharmacies. www.drinkanddrugsnews.com 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.’ DDN Recommendations (left): In light of the findings from this report, LJWG make three recommendations for potential strategies to overcome the obstacles they have identified. Source: ljwg.org.uk September 2019 | drinkanddrugsnews | 9