Getting people on board
Getting people on board is a key element of successful standards adoption and the culture change required to make it happen. It is also arguably one of the hardest elements of any transformation initiative.
"Technology is not and never will be, the rate limiting step in transformation – it is people and will always be people"
To engage people, you need to understand them and their motivations. You also need to understand who you need and why, and how important their positive involvement will be to your success. This section sets out a narrative that describes the case for changing how palliative and end of life care should be delivered by using the Palliative and End of Life Care Information Standard to improve documentation of care, what difference it will make to professionals and people using services and what each stakeholder group needs to do to make the changes happen.
It will help you map the various stakeholders and assess their readiness to adopt the Palliative and End of Life Care Information Standard as well as anticipate FAQs and other needs they may have before committing to undertake the changes we describe here.
The case for change
People nearing the end of their life often are in contact with different health and care professionals over potentially, long periods of time – they expect health and care professionals to work together to respect their wishes and help them have the death they want.
The Palliative and End of Life Care Information Standard supports the recording and sharing of an agreed set of information to support a patient at their end of life.
The implementation of the standard across organisations that manage and care for the same individual will improve the experience of those at their end of life. It will also improve the information available to all health and care professionals to support decision making at point of care.
Having the confidence to give the best end of life care.
The purpose of providing good palliative and end of life care is to ensure the last days, weeks, months or years of a person’s life is the best it can be.
To be able to do this, those involved in an individual’s end of life care need to feel adequately trained and supported, this includes in the creation of care plans and recording of a patient’s wishes and preferences.
To ensure the individual and those caring for them have a good experience during the end of life stages, confidence in the information being shared, is invaluable.
As patients begin to engage in their health via digital tools such as the NHS App or Person Held Records (PHR’s), they will be able to enter information relevant for their ongoing care. This could include information based on the About Me Standard and Personalised Care and Support Plan Standard.
This information will be visible to clinicians at the point of care via conformant shared care record systems. As patients take control of the data they record and share, this will begin to reduce the burden that clinicians currently face of recording and updating information.
The problem
At the present time, information is collected and shared about a person’s wishes, but it can differ by team and health and care professional. The information may be siloed in records in different care settings, it may be partial and even contradict other records, depending on when it was made and who was involved in making it. The COVID-19 pandemic magnified this problem.
In this short film, we hear from a GP, Paramedic and Hospice Clinical Director about the current challenges of sharing information across their services.
The solution
Standardising the information that should be in a person’s care record so that there is a single source of truth would resolve these problems.
Desired outcomes:
At the end of a persons’ life, clinicians can make well informed decisions based on the person’s wishes.
There is access to one standardised view of the information that supports the individual.
The person feels respected, listened to and confident that their needs and wishes will be considered by their care team as they near the end of their life.
The NHS and social care can provide more sustainable services to people at the end of their lives.
In collaboration with professionals, people, carers and others we have produced a new Palliative and End of Life Care Information Standard, which, when implemented across healthcare in the UK, can transform a person’s experience at the end of their life in the following ways:
- More people are able to die in the place they prefer
- People are more likely to be offered advance care planning
- Family, friends and carers are better supported
In the following short film we learn how sharing information quickly and in a standardised way can be critical in emergency situations, potentially making all the difference to a patient and their relatives and carers.
A call to action
Implementing standards is often viewed as a technical fix but in reality, it is part of a wider service change programme to improve the experience of the individual receiving care and those professionals providing care.
If this change programme is going to be successful everyone involved must understand the purpose of the change and what a successful conclusion might look like. This works best when the change is framed in the form of a compelling narrative, that connects with people emotionally as well as intellectually. To help support your narrative, you can download the contents of this webpage as a slide pack.
Local health and care systems need to assess the best approach to delivering this change and identify what will motivate clinicians to deliver the change and the benefits to be realised. The section below ‘Creating a stakeholder map’ outlines in more detail who needs to be involved and how to get them onboard with the change programme.
Resources to support the narrative
The approach PRSB has taken is in line with the national policies of the UK devolved nations, see below for the national strategies.
- England NHS and partners across health and social care updated its national framework in 2021.
- Scotland Palliative and end of life care framework.
- Wales Palliative and end of life care delivery plan
- Northern Ireland Transforming your palliative and end of life care programme
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In the short film below we hear from a GP, Paramedic and Hospice Clinical Director about how services would benefit from a joined up, digital system where all those involved in a person’s care can access up to date records.
Briefing your staff
It is critical that your stakeholders are actively involved from the start and have the chance to influence and contribute to the task of implementing the standard.
These slides provide an outline to help you brief staff on the project, the rationale for doing it and how they will be involved.
You can adapt them to reflect the specifics of your local situation.
Creating a stakeholder map
When starting your implementation project, you will need to identify all the stakeholders that need to be involved in your project. The most useful thing we know from developing the standard is who your key stakeholders are most likely to be and what they are most likely to be concerned about.
The list below identifies the main stakeholders that should be involved when delivering PEoLC change projects.
- The health and care system clinical leads, including the organisation’s Chief Clinical information Officer (CCIO), Chief Digital and Information Officer (CDIO)
- The governance teams that support the implementation of new systems, clinical safety, and sharing of personal data, Information Governance (IG)
- Those that support programme and project delivery and deliver the required change management programme, the Programme Management Office (PMO)
- Most health and care organisations will be members of the Integrated Care System’s (ICS) existing palliative and end of life care working/strategy group. If you have not yet involved this group, it is recommended for you to do so, and utilise this group for the standard implementation project to reduce the burden of additional meetings on very busy clinical staff.
Example list of key stakeholders you may want to include based on our research:
We would also suggest using the RACI model – which identifies who needs to be responsible, accountable, consulted and informed.
Creating a commitment chart
Once your stakeholder list is complete, filling out a commitment chart can be a useful way to compare current levels of commitment to minimum levels needed from key players for effective implementation. Here is an example of a commitment chart that you might use.
You can follow the steps below to determine areas of support and resistance to the project:
- Identify the essential individuals or groups for the project’s success and list them as “key players” on the chart.
- Review the commitment rating system.
- Rate the minimum commitment needed from each key player by placing an “O” in the corresponding box.
- Evaluate the current commitment level by placing an “X” in the box that represents their current level.
- Discuss strategies like personal contact, emails, or recommended readings to achieve the minimum commitment level needed for the exercise.
You can then develop a strategy to move everyone to the desired state of commitment. Below is an example of barriers for specific groups and what could be done to engage these stakeholders and get them on board.
FAQs
EPaCCS is a system to share end-of-life information rather than an information standard.
When EPaCCS were introduced (2008), an information standard was defined and has been used ever since – the SCCI1580 Palliative Care Coordination – Core data set. The PRSB information standard is replacing the SCCI1580 Data set. EPaCCS systems will still be used to capture and share information from people’s discussions regarding their end of life wishes and preferences.
No. The Palliative and End of Life Information Standard uses SNOMED CT to record data items to allow sharing of information through digital systems. Paper documents can be referenced and attached to the record e.g ReSPECT forms, Advance decision to Refuse Treatment etc.
No. The standard is focused on information to support care at the end of life. It should be used alongside other PRSB standards to support patient care and as part of wider shared care records. Please view the full standard here – PRSB Palliative and End of Life Care Information Standard
The standard is one of a suite of information standards that are used in electronic health records. Information standards are used to support the recording of data in a consistent way so that it can be made available whenever it is needed such as when we visit our GP, attend a hospital appointment or order medication from the pharmacy.
No, historic data does not need to be updated. Once the new standard is implemented, the new codes can be used but you will need to consider this change if you are reporting using SNOMED CT codes.
The standard data entries, where necessary, also include the date the data was recorded. This should be made visible in the electronic systems displaying the information so users can be sure of the latest entry.
It is important that your local policy ensures that information is dated and current and that staff are effectively trained to follow these documented processes.
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.
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.
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