Taking stock and planning
Before implementing the Palliative and End of Life Care Information Standard, organisations need to understand their starting point, including readiness of the workforce, their current and planned systems and technology and the local priorities for change.
This will help inform a route map where changes can be delivered in small, achievable steps, building confidence and momentum, and increasing chances of successful change.
Progress can be measured against the priorities and goals agreed by local stakeholders.
This section takes you step-by-step through assessing your readiness for change, taking stock of your current position and planning the implementation of the Palliative and End of Life Care Information Standard.
There are three phases:
- Assess your readiness: The current state from clinical, technical and operational perspectives
- Plan the changes
- Agree how you will measure and evaluate the change programme
Assess your readiness
The following tools will help you at the beginning of your project to evaluate the readiness of your organisation:
Planning a stock take
Follow the steps below to start planning your stock take.
Schedule events and meetings to tell people about your standard implementation plans as part of digital transformation and encourage them to join in the project.
Check your understanding of the problem you might be trying to fix and consider how your sense of the situation is different from the view other stakeholders might have based on their different knowledge and experience, for example as point-of-care professionals.
Offer an opportunity to bring representatives from different stakeholder and professional groups together to find out what they might have in common, how they are different in their approaches, culture, and language, and how they can work towards a shared objective.
Remember that the implementation of the PRSB (Professional Record Standards Body) standard is a people-based cultural endeavour and cannot succeed without the hearts, minds and professional expertise of all your stakeholders.
Holding a stock take workshop
The table below illustrates how you might plan a stakeholder workshop to take stock of your local system’s readiness to adopt the Palliative and End of Life Care Information Standard.
It outlines your potential participants, the purpose of the stock take and what materials/questions you may want to include in the sessions.
Systems and data flows
To understand how end of life information is currently recorded in each of the stakeholder organisations it is recommended that an information gathering exercise is undertaken. The table below captures how the stakeholder group currently captures and shares end of life information:
Process mapping
To further understand each step in the capturing and sharing of end of life information a process mapping exercise should be undertaken by each organisation. You can use our example process map which shows EOL and DNACPR ‘as is’ process flows.
The ‘to be’ process maps should then be developed for each of the systems that will be implementing the Palliative and End of Life Care Information Standard and should take a whole service (patient pathway) design approach.
Baselining
To baseline a project you will need to consider four elements; milestones, budget, schedule and scope.
Milestones: These are the key points in a project you expect to reach by a specific date or range within the project’s start and end dates.
Budget: Your budget is how much you plan to spend on the project.
Schedule: When planning any project, you and your team members need to know its duration. The schedule baseline is your project’s planned timeline.
Scope: Scope is the expected project outcome, any deliverables, and the problem they solve.
Beyond these four elements, you may also want to include other project documents like the work breakdown structure (WBS) and an activity or task list to add detail to each of these steps.
Your organisations’ Project Management Office (PMO) will have project management templates to support you to baseline and deliver you project. However, as the standard is best implemented in partnership across multiple organisations (e.g the Integrated Care System) it may be that each organisation has its own project plan which feeds into an overarching programme plan.
Assessing current conformance to the standard
PRSB standards represent best practice but achieving full compliance is a journey. Whilst full compliance is a good goal to aim for, you can achieve a safe and compliant instance of the standard with a lower level of compliance. PRSB set out a minimum level of compliance (‘Must Haves’) that define a safe and clinically beneficial level of attainment. Download the view the minimum compliance in the document below.
The ‘Must Have’ data items are those that the system supplier must include in their product to provide the minimum safe and effective instance of the implementation of the standard; they take into account that systems are at different levels of standards maturity. As systems and their use mature over time these minimum standards will increase to encourage incremental development towards best practice. The must have data items should not be confused with mandatory items of conformance (Column 2 in the information model) which refers to data items considered essential for the end user to record at the point of care.
How your system supplier can conform to our standard
The PRSB team work closely with system suppliers and health and care providers to implement the standard and also provide robust and independent evidence of their implementation with the award of the PRSB Quality Mark. Systems which have undergone this process can be found on the Quality Partner section of our website.
Your can ask system suppliers to provide evidence of their level of compliance including whether they have been independently assessed and achieved the PRSB Quality Mark. Even if the supplier system is compliant, you will still need to check that your local implementation is compliant. For help and support with assessing compliance with standards, please get in touch with the PRSB help desk.
If a supplier system is unable to reach compliance, a procurement exercise may need to be undertaken.
System suppliers should provide evidence that they conform with the standard. More information can be found in the standards conformance process section.
Procurement
If, as part of the stock take, a system procurement is identified the choice of system procurement route is a local decision and driven in part by the proposed option (for example an extension to an additional service or system vs. a completely new procurement).
There will be national and local procurement protocols that will need to be followed in relation to the PRSB standard implementation.
Download and use the vendor diagnostic matrix to assess your system suppliers.
Understanding governance requirements
It is important to engage the local care system information governance team early in the project. They will confirm what activity must be done prior to any data sharing. Regardless of the system being used for sharing information, information governance is a key requirement.
If your area has a shared care record in place you may find an over-arching Information Sharing Agreement (ISA) has already been signed by the data sharing partner organisations.
As the sharing of this standard may be a new set of data you will need to carry out Data Protection Impact Assessment (DPIA). The DPIA records the data items to be shared, using the standard to list the data items expected to be shared. Your information governance team will have a DPIA template for you to complete.
Example data requirements text for Data Privacy Impact Assessment (DPIA)
This standard supports the recording and sharing of a patient’s care preferences and key details about their care at the end of their life within and across compliant systems.
The standard can be shared via EPaCCS (Electronic Palliative Care Co-ordination Systems) and local shared care records, as these solutions are electronic. Palliative and end of life care information can easily be shared 24/7 between all of the clinicians and carers involved in the patient’s care across organisational and geographical boundaries.
A care record can be created, updated and shared by any member of a patient’s health and care team, subject to locally determined pathway and user administration settings.
The standard enables systems to provide an easily accessible view of the information that carers need in an end-of-life setting. Some of the data that is recorded and shared is pre-populated from the GP record, for example:
- Patient demographics
- GP practice details
- Current repeat medications
- Diagnoses/problems
- Allergies and adverse reactions
Other fields can be filled collaboratively by different health and care providers;
- Primary end of care diagnosis
- CPR (Cardio-Pulmonary resuscitation) decision
- Preferred place of care
- Preferred place of death
- Details on anticipatory medication
- Legal information (e.g., Lasting power of attorney, Advance Decision to Refuse Treatment)
- Professional and personal contacts
- Social information (e.g., housing status)
- Palliative care financial support
Clinical safety and risk management
It is recommended that you make contact with your local care system clinical safety officer or clinical safety management team early in the project. They will be able to advise you on the clinical safety management process that is in place and advise on the development of the clinical safety management process and fulfilling DCB0160 (see below).
Organisations embarking on deployment of health IT systems are required to apply clinical risk management for the deployment, use, maintenance or decommissioning of Health IT Systems within the health and care environment NHS England standard DCB0160 expands on the DCB0129 clinical safety standard applied by the manufacturers of the health IT system.
Health organisations must establish a framework within which the clinical risks associated with the deployment and implementation of a new or modified health IT system are properly managed.
See NHS England’s Clinical risk management guidance
Building a roadmap
Taking all the baseline evidence and material gathered, you can now develop your local roadmap for change.
Focus on all aspects of change, including staff readiness. Work with key stakeholders to develop the plan to ensure commitment and buy-in.
Here is an example roadmap that you may want to follow as a guide.
Checklist and questions to consider
The following checklist will help you determine whether you have the right leadership, governance and controls in place for a transformation programme to succeed. The set of questions that follows will help you gauge your readiness to take stock and plan your transformation programme.
CHECKLIST
Clear senior management ownership and leadership
Appropriate skills for the programme/project team
Clear roles and responsibilities
Effective financial control
Success criteria that clearly link objectives to outcomes, and clear links with the organisation’s key strategic priorities
Effective risk management
Sound commercial knowledge of the supplier marketplace, linked to the requirement and management of the supplier over the contract term
Involvement of key stakeholders throughout the programme/project
Breaking development and implementation into manageable steps
Effective project team integration between clients, the supplier team and the supply chain
QUESTIONS TO CONSIDER
What are the ‘fixed’ points – e.g. system upgrades, procurements etc.?
What activities must take place to achieve change? Awareness raising, training, information governance agreements, clinical safety assessments, system changes, testing etc.
What have stakeholders identified as the biggest priorities for them and when could those changes be delivered?
What are the dependencies? What must happen before other changes can be achieved?
Which changes could be achieved relatively quickly and achieve tangible benefits for staff and patients?
What are the opportunities for piloting the new system (or parts of the new system) on a small scale and who needs to be involved?
Should organisations join the process in a phased way? What is the preferred phasing for organisations joining in?
What needs to happen to ensure smooth running of existing systems during the transition?
What needs to happen to ensure smooth running of existing systems during the transition?
Desired outcomes and measuring
The review of the clinical systems and how information is recorded as part of the PEoLC Information Standard implementation, across the organisations, may provide an opportunity to review the palliative and end of life care aims, outcomes and measures.
The associated measures will allow organisations to develop key performance indicators to help understand whether the aims and outcomes are being achieved.
See the table below to see some example aims and outcomes and the associated SNOMED CT coding within the standard that can be used to report on the achievement of the agreed aims and outcomes.
You can agree the metrics that are relevant to you, but some suggested measures are shown in the table below:
Go to
Assess your readiness
Plan the changes
Measure and evaluate
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.
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.