Using demographic data to improve service reach

No one should miss out on hospice care when they need it. But we know that one in four people do. People from minoritised groups experience several barriers to accessing hospice services.

By comparing demographic data about your local community with the data about your hospice patients, you can:

• examine the reach of your hospice services within the context of your local population
• investigate the population need and identify which groups of people are underrepresented
• consider what changes you can make to better serve your whole population.

Our Activity and Demographics survey collates the key characteristics of the people hospices care for, as defined in the national censuses across the four UK nations. These are:

• age
• sex
• ethnicity
• religion
• sexual orientation
• gender identity.

Our work on palliative and end of life care for trans and gender diverse communities has informed our decisions on how to record gender identity. This is in line with the census questions and the way gender is recorded in children and young people’s mental health services.

Tips for improving your hospice's demographic data

To identify areas of need in your community, you need to collate publicly available local population data. You can then compare this to your patient data to identify gaps in provision.

Tips for collecting local population data

Our survey collects patient demographics at ‘service level’ (an aggregate figure for patients across all your hospice’s activity).  At this level, comparisons are broad but still useful.

To get the most accurate comparison between local population data and your hospice’s patient data, you need to use the local data for your catchment area. This is more accurate than estimating population data by health board geography (unless these are the same for hospice services).

We’ve mapped our members’ catchment areas onto PopNAT to enable you to see the demographics for your population in one click.

These catchment areas were self-reported by our members. The data was collected at Local Authority District level for the main hospice service and where the catchment was the majority of any given district.

Use age- and sex- adjusted ethnicity data to compare population need and reach.

This means taking the age and sex distributions from your reported hospice activity and apportioning them by the ethnicity of your catchment area. This will give you an estimate for the proportion of patients your hospice should expect to be seeing from each demographic group. 

Note: click through from slide 1 to slide 2 to see how the data works

Compare the actual reach of your hospice services with the estimated proportion of patients for that population in your catchment area.

You can make direct comparisons between individual patient data and population data. This allows you to investigate your reach across multiple population characteristics, diagnoses and postcode areas. You can also track these over time.

This information is patient identifiable, so it must only be accessed by approved data users within secure data spaces.

If the data is too granular and the number of patients in any category is too small, this data cannot be shared even if it has been ‘anonymised’.

You can explore and compare your data with local population data across multiple characteristics and at multiple levels.

Note: click on the image to see it at full size.

We encourage our members to work together on our data journey to collect, collate and utilise consistent, complete and accurate data.

This will help us all to improve our service provision and patient care.