Three ways that digital dashboards are driving improvements in end of life care services
A dashboard is a great asset to a service, system or frontline clinician to help them influence change and create impact for an individual and the wider system. This is particularly evident in end of life care where the population is harder to identify and monitor. About 1% of the population are in their last year of life and they make up about 25% of adults in hospital at any one time.
The Institute for Public Policy Research highlighted in April 2021 that digital innovations to support care coordination needed to be a key priority in end of life care. This is an aspiration across the health and social care system to ensure that data is collected and shown meaningfully. The NHS faces significant challenges in:
- Collecting and joining data across different data systems and multiple organisations.
- Displaying data in an effective way to help stakeholders make informed decisions.
- Sharing learning across different organisations to improve people’s health care experience and outcomes.
A dashboard is one tool to assess how a service or system is delivering impact by examining service access, patient needs, user experiences and a person’s outcomes. For example, the End of Life Care Integrator (EOLCI) uses a service dashboard in Hillingdon to understand how the ‘Your Life Line’ project is delivering for individuals. The Hillingdon system dashboard has helped all stakeholders take a step back to understand how all of the end of life care services, including ‘Your Life Line’, are catering for the local population who have end of life care needs.
In this blog we bring together three key learnings on dashboard development set out by Karen Chumbley (North East Essex Health and Wellbeing Alliance Lead for End of Life Care), Ollie Minton (Palliative Care Consultant from University Hospital Sussex), Sarah Churchill and Michael Hanks (EOLCI in Social Finance) from an April 2021 webinar facilitated by Social Finance.
1. Link patients to their outcomes in their last 12 months of life
Where possible, patients at end of life need to be identified to ensure they can access the right services at the right time, but this can be difficult for clinicians to do. Most of the end of life care dashboards discussed identified their cohort retrospectively and then linked them to their activity across their last 12 months of life. This helps services take a stock take on how their current services delivered for individuals across the last year.
In North East Essex, the End of Life Board links data from the Office of National Statistics, Hospital Episode Statistics and the local Electronic Palliative Care Coordination System called the My Care Choices Register. Data can be examined both locality wide and through four main diagnostic groups (cancer, dementia, heart disease and COPD). By combining data sets meaningfully, the Board can enhance the ability of clinicians to examine outcomes for people in their last 12 months of life retrospectively.
The EOLCI team built service and system dashboard prototypes to help examine the outcomes for people in their last 12 months of life such as their hospital activity and outcomes. The dashboard collates data from services and clinical commissioning groups to ensure there is both a person-centred and a system perspective available. This enables local clinicians and managers to to take a step back from service specific activity levels and key performance indicators and survey the larger landscape of needs and challenges in their local area.
2. Monitor meaningful outcomes relevant to local system and patient-centred needs
Measuring outcomes is universally seen as a reflection of an effective and adaptable service. Agreeing which outcomes are most meaningful, however, can be a challenge. The North East Essex Health and Wellbeing Alliance has representation across health and social care organisations, including the third sector. Together they consulted with patient groups and agreed a set of ten priorities referred to as the ‘outcomes that matter’. Each outcome has a relevant indicator on the dashboard and this enables shared accountability for the outcomes across the Alliance. Agreeing on outcomes that matter across organisational boundaries increases the utility of the dashboard for the local system. This enables the system to focus more on the ‘how’ to improve outcomes rather than getting stuck on the ‘what’ to measure.
Brighton and Sussex University Hospital use My Clinical Outcomes for each patient. This brings a personalized approach with a focus on quality of life for people. Consistently monitoring each patient’s outcomes means clinicians can intervene earlier and ensure that wider goals of care are met. Agreeing on outcomes that matter to each person bakes personalized care into the Trust.
The EOLCI monitors both economic and quality outcomes agreed with partners to ensure that the service’s impact can be meaningfully measured and attributed to costs avoided in the system. Outcomes are also linked to demographic groups to monitor and understand potential entrenched health inequalities. This quality-linked measure helps to ensure a focus on improving outcomes for all users, regardless of background or need complexity.
Locally tailored dashboards ensure that outcomes that matter are monitored and allow staff to focus on improving quality of care for the individual, service and system.
3. Provide a tool to help monitor health inequalities
Both the North East Essex and EOLCI dashboards enable analysis through diagnostic groups and deprivation. The North East Essex dashboard also collects data on outcomes by Primary Care Network. The EOLCI dashboard uses a tool which easily views specific outcomes for different segments of the service population through a simple toggle mechanism. This can be used by any project stakeholder to interrogate equity of access and outcomes for different demographic groups. Health inequalities persist through a lack of accountability and monitoring and both dashboards are starting tools to ensure quality end of life care for all.
An end of life care dashboard interest group has been set up to share individual learning and enable a forum for discussion. If you are also interested in joining, please email firstname.lastname@example.org.
What is the future for our dashboards?
Develop and test qualitative outcomes. North East Essex is hoping to link patient feedback data on dignity, symptom control and carer support in future versions. The challenge is to ensure that these insights, including those gained from case studies and Healthwatch surveys, are built into the dashboard. They are also testing what qualitative measures can be measured consistently and used for reporting. The EOLCI team are working with one partner to agree consistent quality measures across the system. Learning from this work will be built into our future dashboard development alongside constant testing and re-iterating wider outcomes that matter. The outcomes that matter can vary over time, both locally and personally.
Test system dashboard perspectives.As we move into Integrated Care Systems, joint decision making will be critical. The dashboards can be a key tool for both strategic and operational decisions, especially for resource allocation to tackle health inequalities. Variation across service access and personal outcomes for people at the end of life with different ages, socio-economic status, ethnicity and even regional placement has been discussed with greater conviction in the last 12 months. Ensuring that dashboards are a tool to monitor and display health inequalities in end of life care is a key priority across all three stakeholders to enable decision makers to distribute resources and create services accessible and suitable for all.
What are the next steps?
A dashboard helps turn cold data into an accessible format to help leaders make meaningful decisions. They bring different organisations and stakeholders around one table to centre discussion on what really matters; the person at the end of life.
You can watch the webinar to hear the wider discussion in context.