About this toolkit

Palliative and End of Life Care
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About this toolkit

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End-of-Life-Getting to grips with the standard

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Getting people on board

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Taking stock and planning

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Putting the standard into practice

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Shared resources and learning

About this toolkit

This toolkit is to help local health and care systems implement the PRSB (Professional Record Standards Body) Palliative and End of Life Care Information Standard so that people get the best care at the end of their life. The standard will ensure that individuals are at the heart of important decision making and that the right information is available to the health and care professionals who need it, making it easier for everyone involved in a person’s care.

Elder lady and carer

The standard has been developed alongside patients, carers, families and health and care professionals

man in care home

The standard represents best practice and is endorsed by key professional bodies.

UK wide image

The standard is for use across the whole of the United Kingdom

Nurse on computer

The standard can be embedded into any care record system.

This toolkit will help with:

  • Clinical user experience (what information should be collected)
  • Information modelling for incorporating into local systems design
  • Interoperability and sharing of data with other settings and systems
  • Building support and engagement with local staff who will be affected by the change. 

This toolkit is for:

Health and care professionals

Transformation
 leads

Commissioners

Project and programme managers

Digital leaders such as CIO’s, CCIO’s, and CNIO’s

 

System suppliers

Technical staff

Information and data quality champions

The toolkit is divided into sections that address each stage of the change management process needed to adopt standards. 

It is intended to help all professionals, whatever their role in digital transformation. However, depending on your role in the change management process you may find certain sections more relevant to your needs. 

It is vital to remember that successful change programmes often require several iterations of the sections in this toolkit. These stages are the lifecycle of a standard adoption programme from the first iteration through to completion and can be repeated at any point in your implementation programme.

The sections in the toolkit are:

Getting to grips with the standard

Describes the standard, how and when to use it . This section is useful for health and care professionals, commissioners, transformation managers and leaders, technical staff and IT leads as well as system suppliers.

Getting people on board

Sets out how to create a vision, enlist leaders and build a team to deliver change and its benefits. Transformation managers, project managers, digital leaders and champions may find this section particularly useful.

Taking stock and planning

Describes how to baseline the current position and design a roadmap for the change programme. This section is particularly relevant to project managers, transformation managers, commissioners, technical staff and digital leaders and champions, though others may also find it useful.

Putting the standard into practice

Sets out how to commission the changes, address training needs, ensure standards meet safety requirements and plan an evaluation programme. This section is useful for commissioners, transformation and project managers, as well as health and care professionals, digital leaders and champions.

Shared learning and resources

Will feature case studies, lessons learned, resources, links and details of how to join communities of interest. Users could include anyone involved in the change management project.

Before you start

Before you get started you may want to read our Standards explainer which describes what information record standards are, why they are needed, and how they support better care.

  • Standards explained
    The Standards explainer describes what information record standards are, why they are needed, and how they support better care.

 

Successful transformational change

To succeed transformation, programmes need to be built on strong foundations with clear goals in mind, the right leadership and an engaged coalition of staff and stakeholders. Done well, they result in new, more efficient and effective ways of working that deliver better services and care. As such they require planning, committed leaders and project management.

If you’re adopting this standard it may be useful to think of doing so in terms of a change management approach. This toolkit presumes that your organisation and partners in the local health and care economy will have processes and people in place who can support the change management programme. To get you started, you may find our information on transformational change useful.

 

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About this toolkit
What does it include?
How to use the toolkit
Before you start

PRSB Standards Explained

Why we need standards to record our health and care information in a consistent way so that it can be made available whenever it is needed.

Read More

Making change happen

Transformation programmes need clear goals, the right leadership and engaged staff and stakeholders. Get started by reading our information on transformational change.

Read More

PRSB Support Available

If you have a question for PRSB, please contact our support team. We have an expert team who can help you find the answer, or direct you to the right place.

Read More

CHAT theory also explicitly addresses five areas which if addressed systematically will help overcome stakeholder differences in pursuit of the common goal:

1. Understanding the artefacts that characterise the group and its activity.
• The artefacts might be clinical settings or the forms and templates used to capture and share information. During the pilot we heard about hard copy Dialog response forms; locally generated templates for collating information from different systems; letters and emails to GPs; images, poems or other non-text artefacts that service users might want to include in their ‘about me’ or care plan.

2. Understanding the multi-views of the group. Such groups are always a community of multiple points of view, traditions and interests. 
• Different participants in the group will have different roles and will bring to the group and their roles their own histories, language, and ‘rules’. During our Stocktake preparations and workshops we worked with psychiatrists, mental health nurses, occupational therapists, social workers, transformation leads and voluntary sector representatives, all professions and interests with their own language, approaches professional ‘rules’ but united in their interest in care plans, care planning.

3. Activity systems (like the ICSs) take shape and get transformed over periods of time. ‘Historicity’ is a term coined to express how the group’s problems and potentials can only be understood against their own history. 

 

• ‘We’ve always done it this way’, ‘that didn’t work before’, ‘it’s always like this’, ‘it wasn’t always like this’, ‘they are changing things again’, are all typical statements that often frustrate those charged with overseeing change initiatives. Without addressing the experiences that lie behind such comments you risk repeating mistakes of the past, alienating your stakeholders or just not understanding the real starting point for your transformation project. This is particularly the case for the implementation of the PCSP standard, the success of which will be largely reliant on point-of-care practices and information protocols as well as having systems which are user friendly and appropriately configured.

4. The central role of contradictions as sources of change and development. Contradictions are not the same as problems or conflicts. Contradictions are historically accumulating structural tensions within and between activity systems. Collectively addressing contradictions in how policy, practice, culture and technology interact will empower teams to find genuinely novel solutions for apparently intractable challenges, like interoperability and shared care plan/planning. 

This links to the fifth principle that:

5. the possibility of expansive transformations in activity systems. As the contradictions of an activity system are aggravated, some individual participants begin to question and deviate from its established norms. In some cases, this escalates into collaborative envisioning and a deliberate collective change effort. “An expansive transformation is accomplished when the object and motive of the activity are re-conceptualised to embrace a radically wider horizon of possibilities than in the previous mode of the activity.”

Successful teams have the functional skills to lead a task, benefit from diversity, and are led in a way that creates time and space for reflection; the ability to take stock periodically, of the task and of the way in which the team is engaged in delivering it. Your stakeholder analysis [HYPERLINK] should help you assemble the most appropriate team and identify how the team interacts and relates to other stakeholders like sponsors, services users, etc.

The variation in the size, both in terms of population served and numbers of constituent organisations, and of complexity, between Integrated Care Systems, precludes the possibility of any prescriptive guidance on the way in which this team is assembled.

Engeström’s expansive learning cycle of learning actions explains how there are 7 stages of learning actions;