Data changes lives – how information-sharing and recording can help transform social care

A guest blog from Katie Thorn, Project Lead at Digital Social Care

While we are experiencing greater appetite for the use of digital data in healthcare, the demand is also becoming more prevalent in social care. Our report published with Skills for Care in 2021 informs that 20% of care organisations considered themselves as ‘digitally matured’, as opposed to only 12% in 2019. In a more recent publication from Ipsos Mori, it was reported that 40% of adult social care workforce feel secure in their use of digital technologies. We can expect this percentage to grow even more rapidly within the next few years, especially with the government’s plans to ensure 80% of CQC-registered adult social care providers will use digital care records by March 2024. But how can we make sure that we fully utilise them to improve the quality and efficiency of care?  

With the constant transfer of people between health and social care settings, it is important that the information flows from one system to another, in order for the person to receive the best care possible. Integration and interoperability are crucial to this. There is a tremendous level of frustration when people transfer from healthcare to social care, and little or no records travel with them. For example, it’s essential that social care professionals are able to see corresponding GP records, including blood test and current medication information. This should be provided in real-time, avoiding the need for carers to spend valuable time calling hospitals. To be able to deliver effective care, we need a holistic overview of somebody’s life. Using information standards, such as PRSB’s eDischarge summary, can help support the information sharing between healthcare and social care. 

Enabling care providers to use data on an ongoing basis is empowering and means they have more time to deliver better care. Instead of documenting data in multiple streams, they should be able to do it just once and digitally at the click of a mouse. However, recording data is not simply about putting information on a screen – to use it effectively, we need to remind ourselves why we want to record it in the first place. We must remember whose data it is, and how it is used meaningfully and ethically.  

Data is everywhere in our lives – care organisations need to think about how to store and how to share it. However, data does not only include basic information, such as demographics, age or a condition with which a person lives. To help deliver more person-centred and effective care, we need to think about the data that matters to the people we support– for example, how they would like to be communicated with or how they would like to be fed. Implementation of PRSB’s ‘About Me’ standard facilitates consistent capture of this information, enabling its flow between health and social care services.  

Care providers do not need to be technology experts to work with data. Indeed, data has been held and used in paper formats as long as social care has been around. However, knowing what to do with data and how it should be utilised to achieve the right outcomes for individuals is the first step in understanding how to capture information consistently for seamless transfer between settings. Education and development is required in three key areas – people, processes and technology, and in that order.  

Adopting digital solutions offers a consistent story and rigorous audit trail in the provision of care, which means that carers can make informed decisions and work more efficiently and effectively, resulting in high-quality care. I am looking forward to seeing how further digitisation, including accurate and consistent information sharing and recording, enabled by standards, will help transform social care services and deliver better outcomes for their users.  

Social care providers can help accelerate this progress by achieving excellence in the implementation of information standards, contributing to more integrated care and improved interoperability. The PRSB’s Standards Partnership Scheme can support them in doing so – find out more.

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Personalised care and support planning for people with severe mental illness

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides more detailed explanations about each element of the plan, including advice on how the planning process might be best conducted.
These questions might form a checklist for current plans to be compared with. 

1. Does the plan include an About Me section in which the service user, in their own words, can indicate the information they want to be available about their lives, their values, their interests, and priorities, available for all those who may care for them?
2. Is the approach to developing a care plan patient centred and engaging, allowing plans to be based on patient priorities goals, and aspirations, along with the actions they plan to take and the support that they will receive?
3. Is there space for a “formulation” to be recorded in which the person receiving care and the professionals who provide it, share and record the personal meaning and the origins of the person’s difficulties?
4. Are relevant procedures and therapies recorded?
5. Where relevant, are one or more contingency plans included for anticipatable disruptions, exacerbations, or deterioration, and do they include advice on what to do and points of contact for those called upon to respond?
6. Where relevant are additional supporting plans incorporated, (an example being an “educational and health plan” for someone with a neurodevelopment disorder)
7. Is a version of the plan available to a service user (if they wish to have it) in a form and format that they can understand and find to be of value?
8. How is a version of the plan available to the GP and other key parts of the health and care system?

Work conducted by PRSB and partners recently has looked specifically at the suitability of this approach to the development and documentation of care and support plans for people with Severe Mental Illness. This resulted in an updated version of the standard (v1.4), for use by any service and for any group of service users, but with some modifications to ensure that it meets the needs of this community. The approach to a patient centred process of identifying goals, hopes, and values, and the support needed to achieve them, is fully compatible with and can be conducted using, specific tools in use in mental health, such as DIALOG, DIALOG+, and ReQoL, for example. 

Where analysis indicates the need for improvement in the content and process of personalised care and support planning for patients with Severe Mental Illness, specific improvement projects should be instituted to co-design with service users and their representatives, and the relevant staff groups, new approaches, and documentation that would be of value in delivering improvement. The toolkit includes a range of existing resources that could be used to engage in this improvement work, including signposting to relevant existing approaches informed by patient experience-based design.

Moving to a single holistic plan

A review of a sample of current care plans, and the way they have been developed, may be helpful in identifying the priorities for this improvement. The PRSB Implementation Guide provides A key development, consistent with national policy on support for Personalised Care across all health and care sectors, is the move towards an individual with complex needs having a single, integrated, care plan, rather than a series of plans developed by different parts of the health and social care system in isolation of one another. For a patient with severe mental illness, the related concerns and challenges might form a very prominent part of such an integrated plan; many will also have concurrent health challenges and needs. The intention is that the relevant services work together to plan and wrap support around the patient and their family in an integrated way, rather than as a series of sequential or disconnected encounters in which the service user or their friends and family have to adopt the role of the integrator.

A starting point would be to agree priority groups of service users who may already have more than one care plan because they need care from more than one part of the system of health and social care. This could be initiated by looking at service users registered with some sentinel practices or PCNs. Alternatively, the approach might focus initially on people with defined co-morbidity or risk that entails collaborative care with agencies beyond specialist mental health services.

The focus here is on the process of care planning and agreement on what should be shared, rather than solely on the technology used;

1. What is the process to agree which professional will initiate care planning and act as the “lead point of contact” for the service user?
2. Will initial plans be agreed with the service user in joint consultations or sequentially? Where and how will they be conducted?
3. What will be the process to agree the elements of the plans which should be available to professionals and potential authorised users beyond the immediate care teams, (A&E services, Ambulance Services, Social services, etc.) with the service user’s consent?
4. How will elements of the plan be updated following consultations in a way which is proportionate, to allow contact and progress notes to be maintained by the service conducting the consultation, whilst avoiding unnecessary work for partners in care if there is no significant change to the personalised care and support plan?
5. What are the implications for workload, logistics, and administration arising out of these decisions?

The answers to these questions and others will best be elicited through focused joint working, grounded in real, or at least realistic examples. This will entail process mapping, and co-design with a range of professionals, service users, and families. Resources from the toolkit and outputs from the Simulation element of this project will be valuable. Some organisations would adopt an approach such as a Rapid Process Improvement Workshop, planned over several weeks and conducted over a number of sequential days, to develop prototype ways of working that could be tested in the field.