Using public health data to support end of life care planning

Using public health data to support end of life care planning in populations.

Can the NHS and wider health systems, think about prevention and proaction using data and insight from all the systems the NHS and social care have connected to each other?

There are two ways to think about how public health data can be used to support end of life care planning for populations.

Thinking what public health data is available; the branch of medicine that includes healthcare, health protection, health promotion, and where the data serves the understanding of the epidemiology of a disease and death.

But also,

?“Using publicly ‘available’ health data to support end of life care planning in populations” thinking through what data is available without exclusive access or direct care mandates to understand what information is held and how that can be used to plan for end-of-life care services.

Both work in a population health approach, which is a data driven understanding to improve the health of the entire population, with a focus on the outcomes, and reducing inequalities.

NHS England describes population health as a system to person and person to system approach. This can be viewed at the macro and micro levels and have influence on tackling inequalities and improving outcomes for people. It is how the evolutions of the NHS long term plan are being implemented.

The System, the intergrated care system, the ICS, is the regions and in the forty-two intergrated care systems, these are the macro issues facing populations of 1-2 million people, usually cities and large geographical regions. Greater Manchester for example.

Place is more closely aligned to the local authorities and the council within the Intergrated Care System. Previously these are the clinical commissioning groups within the NHS.

Neighbourhoods: getting closer to the people, GP practices, primary care networks and the care delivery teams close to where people live.

There is a consideration of what data can be used at a person level. At this level data is not public, but it’s important for those with the influence in the system to consider how they are able to invest in technology infrastructure which can have a significant impact on people’s final days and months.

Data exploration may begin in the public domain above the system level, at national and international level.

The global burden of disease is a great resource, freely available. International data collection and analysis of the health issues affecting countries around the world. England has particularly good data in the visualisations down to local authority level as the UK is digitally mature in its health system, and this research study is a valuable output of the investment in digital of the past c.20 years.

The global burden of disease can show the causes of death in the UK.

Overwhelmingly the UKs burden of deaths is from non-communicable disease, noticeably cardiovascular disease, cancer and leading into drug and alcohol related conditions.

At the country level it shows what people are dying from, and this can be adjusted to see which has the greatest impact across lives. The evidence tells us people live shorter lives, and more of those shorter lives in ill health in more deprived areas.

Switching the data to reflect this there are changes in the profiles.

CVD diseases are reduced, and people are shown to be living longer with mental health conditions, diabetes, and COPD.

The implication: people are dying from CVD, long term health conditions are more prevalent across lives. And this can be important in health planning where to invest the money to help people simply live longer or live healthier lives.

The global burden of disease also allows the understanding of the risk of these diseases. The largest influence is behavioural rather than metabolic. With high risks to CVD.

Looking deeper into the risks number 1 tobacco / smoking, number 2 high glucose / diabetes, number 3 high BMI / obesity.

If ‘The system’ wanted to make in impact on health, smoking and unhealthy diet may be a place to start.

From a planning view, understanding this data and being able to apply it to populations to decide where to invest in what services as commissioners are able to understand what people need closer to death.

Smoking drinking, and poor diet are risks strongly associated with deprivation.

The index of multiple deprivation is a free online tool mapping its shows variation against lower super output areas, this is areas of about one thousand people.

Deprivation has such a significant impact on people’s lives, if you want to know where disease risks live, you are not too far wrong looking at these darker shaded areas.

Michael Marmot wrote about the impact of deprivation on health in 2010.

Those who live in more deprived areas have poorer outcomes than their more affluent neighbours.

Sir Michael spoke recently at an RSM inequalities conference. “don’t blame the people, blame the poverty.”

Across the three reports the impact of deprivation and inequalities are clearly shown.

The first in 2010, which cemented the idea from the Black report in the eighties of deprivation linked poor outcomes.

In 2020 weeks before the pandemic, a review of the austerity years, things have gotten worse, for the first time in 120 years life expectancy is reducing and health life expectancy lower. The third report, post pandemic highlighted the inequality if COVID.

Beginning to think about how we greater understand data and use that to understand populations, the office for national statistics releases regular data on deaths. Not just on COVID, but the causes of deaths and on descriptors such as preferred place to die. Recording the numbers of people who are dying in hospital, at home, and in hospice.

As a planning tool see the trends in deaths can be seen, understanding this and the population to consider where and what services to invest in, where do people want to die, and how can the system invest in services to achieve this, and what services are needed, in hospital, and in the community, where the balance of provision is.

The national institute for health and care excellence (NICE) is a very in depth, and free, data resource. It covers how we should care for people at the end of their lives through guidance and quality standards, but as well it has the tools and resources, audit, and importantly the shared learning of best practice.

As commissioners, now in the ICS, previously the CCG, are thinking about end of life and palliative care services they can understand trends in their population and which diseases they die from (NCD or communicable disease), and from the NICE library understanding the best care people should receive. And commission those services from the Place and Neighbourhood level providers for quality, based on the newest evidence and best practice. These should be forming the quality metrics in the contracts they commission, evidence-based outcomes, not activity.

There are more data sources available across the System and into the Place levels for people to freely use.

The Office for Health Improvement and Disparities (previously Public Health England) have an excellent site called Fingertips. There are profiles on different diseases and wellbeing.

The palliative care and end of life profile shows variation across the deprivation deciles in local areas and the profile team have pulled together the relevant guidance and research to support more improved commissioning of services.

The hospital episode statistics (sometimes called HES or SUS). This is data collected monthly across secondary care. There is a lot of data in about hospital activity if you are interested in understanding the pathways and journeys of people through secondary care.

16.2 million rows of data on episodes of inpatient care for one year.

This data is slightly more difficult to access.

This data is at System and Place level, but to get closer to the person, where people live work play and die, where services are delivered, and where people receive services at neighbourhood level.

This level where we are moving away from national and internationally collected data and into local data, data the local authority / the council collects and analyses.

Local authority public health teams are a valuable resource to work with.

This is where the deep knowledge of the people for your area lives. The council teams are concerned about health, but they also look at the wider determinants of health. Working with organisations such as health watch, and the charity sector, who speak for the people and conduct qualitative research with people at neighbourhood level to understand what they want from their public services.

The Wirral Intelligence service is an excellent example of what possible in a local intelligence team, and what can be shared publicly to understand your local people.

The data at neighbourhood level within the NHS and council looks across the wider determinants of health. This is where you find rich data covering the wider aspects of health.

Healthcare services data is available, but this is about understanding the difference in needs of the affluent and deprived areas. The impact education (for example) has on people life prospects. And how the council is much more than just collecting the bins.

Whilst nationally we can map where those with CVD live and die, at a neighbourhood level we can talk about where those who are lonely live, and what we can do for them to feel less alone, or support those they leave behind.

Getting closer to delivering care to the person does not mean that there is not data at this level. This is where the most amount of data lives.

Its where we can understand the deficits which are contributing to a persons increased frailty (for example) and build a multidisciplinary team to address the cause of the causes.

To make people more comfortable, is it their poly pharmacy that is contributing to a decline?

Understanding at this level is about impact of risk and the planning for palliative care at the neighbourhood and primary care networks level.

The biggest companies providing systems at this level are EMIS and TPP as the GP and community EPR providers. Adding in layers of hospital and community data, powers machine learning and AI to identify people underserved and missing gaps in their care. It can bring a disparate MDT together under one plan.

These levels of interoperability at the person level are not science fiction. The Great North Care Record connects 8,000 care professionals so they can see a single care record for their people across the northeast.

One London does the same, connecting nine million people’s disparate primary, secondary, and social care records. Access to data can make a real difference.

It is possible to achieve a good death with connected data. We do not have time to play the video, but I would encourage everyone on the call the look up a good death on YouTube. This video is about Susan and her mum Bridget.

And how all the data levels I have spoken about have come together for Bridget for a good death.

https://www.youtube.com/watch?v=e7bI46bNtA4

The connected data at that patient level means she did not have to go back and to, hospice to hospital, in the final days. The system above the person level invested in infrastructure, they understood there we gaps in quality of those dying and decided to do something about it.

We have the infrastructure and the intelligence to deeply understand life, we need to move towards the interventions and impact of that knowledge, think person to system, system to person.

Implement population health.

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Thankyou,