Understanding and addressing barriers to sharing of high-level data on unpaid carers between system partners 

Jude Boyle from Derbyshire County Council and Michael Rose from Derby City Council share insights project in Derbyshire examining the barriers to sharing high-level carer data across the local care and health system. Drawing on insights from healthcare practitioners and unpaid carers, they highlight why this data matters and what the key challenges are, and outline an action plan to strengthen and improve sharing data on carers in Derbyshire.  

A big challenge in Derbyshire has been trying to share high-level demographic and caring experience data on unpaid carers across health, social care, carer support services and other system partners. We need this information to help us to understand how well we are supporting our unpaid carers, how well we are serving different communities and groups across Derbyshire and to know where to focus efforts and resources to improve the support available to unpaid carers. 

An integrated approach to sharing high-level carer data helps to ensure unpaid carers receive the right support, through earlier identification and recognition, enabling them to look after their own health and wellbeing, and helping them to continue to support the people they care for, which all helps to reduce the likelihood of carer breakdown.   

Derby and Derbyshire councils undertook a project to gain an understanding and awareness of the barriers to sharing high-level carer data and information across the local Joined Up Care Derbyshire (JUCD) care and health systems. Developed alongside ADASS/LGA: Partners in Care and Health (PCH) and the experiences of unpaid carers, GPs and carer support services, the findings were published in a report Understanding the barriers to sharing data about unpaid carers across the Derby and Derbyshire health and care system and shared in a PCH webinar.  

Barriers identified by professionals 

Some of the key findings identified by professionals as barriers to sharing carer data included: 

• An organisational culture of risk aversion due to GDPR, with the fear of consequences for themselves and organisations if they share carer data – and lack of confidence and understanding about when data can be shared lawfully  

• The absence of a standardised approach to the collection, reporting and sharing of information about unpaid carers and concerns about data quality and reliability 

• A lack of trust sharing information about unpaid carers with partners by professionals 

• Data sharing not being an organisational priority, in addition to the burden of collecting and sharing with others 

A Derbyshire GP who shared her own experiences as part of the project discussed why family practitioners are often reluctant to share information about unpaid carers. She described GPs’ concerns relating to data they collect about unpaid carers, adding that they are personally and professionally accountable and will be held responsible if “something goes wrong”. This can “lead to professional consequences and added to stress for GPs.” She also discussed concerns that it could also undermine trust in GP and patient relationships, with unpaid carers feeling the need to be assured that “vulnerable and intimate information” would not be shared or misused. 

She explained that GPs and unpaid carers actually want the same thing: “safety, clarity, continuity, dignity and partnership” and the issues with sharing carer data can range from “legal uncertainty, ethical, emotional and practical”. “When a GP hesitates to share information, it is not because they do not care. They care deeply about a patient’s safety and rights and the trust that sits at the heart of general practice. Carers care deeply too and neither group can do their job without the other.” She concluded that if GPs can build relationships where unpaid carers feel recognised and health practitioners feel safe, then we can move from that fear to a partnership. 

Barriers identified by carers 

Barriers identified by unpaid carers included some people not actually recognising and putting themselves forward as an unpaid carer; not being clear on the use and benefits of their information being shared, in addition to not believing that it will be used for anything useful. Distrust of professionals was another barrier including concern about whether their information will be handled safely and securely.  

A carer from Derbyshire shared that caring can be a minefield of new learning and that trust, identity, privacy and security are priority issues for unpaid carers. The carer reiterated that there was a concern amongst unpaid carers that the information they shared with professionals may be misused, asked for them to have respect for unpaid carers when they do share information and to have a better understanding of the person drawing on care and support. There was also advice on putting more focus on sharing information the unpaid carer has told the professional about the person rather than what they may have observed in a five-minute meeting with them both. The carer concluded that what unpaid carers needed was support but too often they were repeating the same stories to professionals and being passed back and forth between services. 

Derbyshire Carers Association, the carers support service provider in Derby and Derbyshire, has shown how sharing information about unpaid carers has helped to improve services. The support provided to unpaid carers includes young carers transitioning to adult carer support services. Work also includes identifying the wards and parishes where unpaid carers are being underserved by services. This enables key partner agencies to coordinate and deliver better, more integrated support. Projects like the GP liaison project and hospital discharge engagement have already strengthened carer identification, improved practice registers and increased health‑based referrals from 20% to 32%, highlighting how coordinated, flexible and person‑centred approaches can better support unpaid carers across the county. 

Key actions to improve sharing data on carers in Derbyshire 

In Derbyshire, an action plan to improve data sharing is forming part of the new system-wide JUCD Carers Strategy. It includes:  

• Developing an explanation for unpaid carers and different partners to help them to understand the need and to sign up to the sharing of information 

• Working with GPs and other partners to better understand and overcome barriers to data sharing 

• Developing, agreeing and implementing a system-wide information sharing agreement for carer data including social care, community and hospital trusts, GPs and carers support services. 

• Using this information and partnership approach to support embedding unpaid carers, and the people they support within the development, planning, decision-making and delivery of the new neighbourhood health framework in Derbyshire 

Conclusion 

We have gained key insights to understanding the barriers to sharing carer data in Derbyshire which include the challenges for both unpaid carers and professionals to share information with trust, people not recognising themselves as unpaid carers, and concerns about a standardised approach to data management. We have started to address these challenges through an action plan which sets out how to share carer data effectively across the health and adult social care systems in Derbyshire and – alongside our partners – to ensure that unpaid carers receive timely support.