Patient Profiling

Disaggregating the Data

David Codner

Overview

Within the workshop we will be looking at how disaggregated patient profiling data can be used to identify equality issues What we mean by patient profiling data What is required to collect good quality patient

profiling data What disaggregated data looks like Its potential uses

The workshop will be interactive

Patient Profiling

Patient profiling data is part of the key information that the NHS should collect from every patient

Patient profiling is concerned with understanding who uses the services and how in terms of diversity. It also concerned the health experiences of different people

It is essential information required to properly advance equality and manage diversity

The implementation of EDS requires the use of patients profiling data

What is patient profiling?

The Starting Point

Rubbish in = Rubbish out

What to Collect?

Age Disability Gender reassignment Marital/relationship

status (including marriage and civil partnership)

Pregnancy and maternity

Race/ethnicity Religion and Belief Sex Sexual orientation Language (first/main)

When to Collect?

The opportunities to collect patient profiling information increases with The length of relationship and Intimacy with

the patient/service user

Patient profiling should be collected at the earliest possible opportunity

How to Collect?A self declaration process should be used Use a collection method that takes into

account Privacy issues A person’s ability to read or disability

Information should be available to patients on Why the information is required How it will be used Who has access to the information

Data Quality Issues Collection levels need to be as high as possible

with a minimum level of 90% Staff should be trained and supported on the

collection process Procedures should be put in place to ensure

that staff follow the procedures for data collection

Certain data items will need to be updated from time to time

Validation of data maybe required Set quality targets and standards to ensure data

is usable

Collection Systems

What you can collect will depend on what your IT systems are capable of collecting Many of NHS patient administration systems

require updating to be able to collect the full range of patient profiling items

You may also have stand alone systems that might be easier to update

Barriers to Collection

GP and staff knowledge and attitudes

Lack of data collection by dentists, opticians and pharmacists

Lack of data sharing with PCTs/CCGs

IT systems Staff knowledge and

attitudes Lack of patient

profiling data with referral

Primary Care Secondary Care

Exercise

In your discussion group:

1 Identify what barriers exist to patient profiling data in your sector

2 Identify what the solutions are to the both the barriers outline previous and the ones that you have further identified

Disaggregating Data

You will only get from the data what you have put in

Useful disaggregated data will provide a picture by protected characteristics

It will have an appropriate baseline for comparison Selection of the correct baseline is very

important The variations which might highlight

equality issues can be clearly seen

Identifying Equality Issues A baseline for comparison needs to be selected

carefully Baselines can include:

Census data Reporting from 2011 Census should begin from

November 2012 Practice populations All service users A dieses/condition group and other public health data A sub set of any of the above eg patients over patients

over 60 but subsets needs to dealt with particular care so not exclude people you might want to know about

Basic Patient Profiling Men are almost 40% more likely than

women to die from cancer And they are 16% more likely to develop the

disease in the first place The male suicide rate is 17 per 100,000 of

the population compared to 5.3 for females The rate is 17.7 for males aged between 45 –

74 CHD is the most common cause of death

for men under 75 in the UK

Advanc ing Quality P atients 2011 - G ender

0%

10%

20%

30%

40%

50%

60%

70%

80%

A ll C ardiology Hip & K nee P neumonia S troke A ll A dmis s ions

F

M

The gender of patients in the Advancing Quality (AQuA) programme for 2011

DNA R ate 2011 - T ime of Day and G ender

0%

2%

4%

6%

8%

10%

12%

14%

16%

18%

B efore 10am 10-12 12-2 2-4 4-6 6pm+

F emale

Male

Exercise

In your discussion group please state

1 What activities should patient profiling data be collected against

2 What are the potential uses

Activities and Uses

Activities Service use

Access to services Patient pathways Referral decisions

Policy implementation Disease registers Clinical outcomes Complaints PALS activity Incidents Clinical audit Patient experience activities Community engagement Public health data collection Research

Uses Commissioning services Procurement decisions Service reviews/ design/redesign Equality analysis/ EqIA Strategy and policy making Financial planning Service improvement activities JSNAs EDS implementation Communication strategies Community and service users

engagement