A presentation by David Codner on disaggregating patient data to help identify equality issues

1. Patient Profiling
Disaggregating the Data
David Codner

2. 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

3. Patient Profiling
What is 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

4. The Starting Point
Rubbish in = Rubbish out

5. What to Collect?
 Age  Race/ethnicity
 Disability  Religion and Belief
 Gender reassignment  Sex
 Marital/relationship  Sexual orientation
status (including  Language (first/main)
marriage and civil
partnership)
 Pregnancy and
maternity

6. 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

7. 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

8. 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

9. 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

10. Barriers to Collection
Primary Care Secondary Care
 GP and staff  IT systems
knowledge and  Staff knowledge and
attitudes attitudes
 Lack of data  Lack of patient
collection by dentists, profiling data with
opticians and referral
pharmacists
 Lack of data sharing
with PCTs/CCGs

11. Exercise
In your discussion group:
3 Identify what barriers exist to patient
profiling data in your sector
4 Identify what the solutions are to the both
the barriers outline previous and the
ones that you have further identified

12. 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

13. 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

14. 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

15. A d van c in g Qu ality P atien ts 2011 - G en d er
80%
70%
60%
50%
F
M
40%
30%
20%
10%
0%
A ll C ardiology H ip & K nee P neumonia S trok e A ll A dmis s ions
The gender of patients in the Advancing Quality (AQuA)
programme for 2011

16. DNA Rate 2011 - Time of Day and G ender
18%
16%
14%
12%
10% F emale
Male
8%
6%
4%
2%
0%
B efore 10am 10-12 12-2 2-4 4-6 6pm+

17. Exercise
In your discussion group please state
3 What activities should patient profiling
data be collected against
4 What are the potential uses

18. Activities and Uses
Activities Uses
 Service use  Commissioning services
 Access to services  Procurement decisions
 Patient pathways  Service reviews/ design/redesign
 Referral decisions  Equality analysis/ EqIA
 Policy implementation  Strategy and policy making
 Disease registers  Financial planning
 Clinical outcomes  Service improvement activities
 Complaints  JSNAs
 PALS activity  EDS implementation
 Incidents  Communication strategies
 Clinical audit  Community and service users
 Patient experience activities engagement
 Community engagement
 Public health data collection
 Research