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Enabling Integrated End of Life Care with a population data dashboard


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Thursday, 25 March 2021

Enabling Integrated End of Life Care with a population data dashboard

The guest blog this week is by Dr Karen Chumbley MBBS FRCGP MSc, North East Essex Health and Wellbeing Alliance Lead for End of Life Care.

Enabling Integrated End of Life Care with a population data dashboard

The 2021 white paper on health care reform reinforces a population-based approach to health care and a duty to collaborate between health and social care partners. The triple aim of better care for all patients, better health and wellbeing for all people and a sustainable use of NHS resources will require not only collaboration but also needs to be informed by relevant integrated data.

The North East Essex Health and Wellbeing Alliance has developed an End-of-Life Board with representation across health and social care organisations including the third sector. Together we consulted with patient groups and have an agreed set of ten priorities we refer to locally as the ‘Outcomes that Matter’ and together we take shared accountability for these for our local population and are working towards a shared accountability for the resources held across the Alliance for End-of-Life care.

The Outcomes that Matter

  1. To identify and recognise people in the last 12 months of life
  2. To inform people thought to be within the last 12 months of life and their families of the likelihood of death within the next 12 months sensitively and honestly
  3. To elicit and record people’s preferences for care during the last 12 months of life
  4. To respect people’s preferences for care during the last 12 months of their life
  5. To ensure people’s preferences for care are accessible to all parts of the health and social care system/end-of-life-care system
  6. To treat people at end of life as individuals, with dignity, compassion and empathy
  7. To control pain and manage symptoms for people during the last 12 months of life
  8. To minimise inappropriate, unnecessary and futile medical intervention during the last 12 months of people’s life
  9. To ensure that people at end of life have equitable access to flexible 24/7 end-of-life care services irrespective of the place of care or the organisation/s providing care
  10. To provide support to the families and other carers during and after their loved one’s end of life

To inform the End-of-Life Board we have developed an integrated data dashboard. Version one of this dashboard links data from the Office of National Statistics, Hospital Episode Statistics and from the local Electronic Palliative Care Co-ordination System called the My Care Choices Register.

Each outcome has a relevant indicator and these are displayed to give the End-of-Life Board an overview of how the priority outcomes are being achieved. For example, the achievement of identification of people approaching the end of life is measured by access to the My Care Choices Register as this represents an advance care planning discussion, symptom control is measured by the provision of anticipatory prescribing, and over medicalisation by recurrent admissions in the last 90 days of life.

Not only can a locality wide overview be seen, but the data can also be examined by four main diagnostic groups, cancer, dementia, heart disease and COPD allowing comparison of outcomes between these groups.

Data is also divided by Primary Care Network and indices of deprivation, allowing the Board to see areas of inequality and to focus resources accordingly.

This data has enabled focussed allocation of resources and the measurement of intervention. It visualises the outcomes for the population rather than the patients served by our individual organisations and calls us to account for inequities displayed.

As resources are increasingly allocated to cross organisational decision-making boards, such integrated data can inform, challenge and drive change.

In future versions we hope to link patient feedback data on dignity, symptom control and carer support, as well as further financial data on the allocation of resources to enable the End-of-Life Board to create continued cycles of value improvement in End-of-Life care, enabling the best possible achievement of outcomes for people with the resources available to us.

If you are interested in learning more about this dashboard you can view a presentation at: https://www.youtube.com/watch?v=tGWUNZB9PBU