Carers’ Needs AssessmentData Issues

Dr Agnes MarossyConsultant in Public Health

Why Carers Needs are Important

• Nationally, carers providing high levels of care are twice as likely to report poor health compared with those who did not have any caring responsibilities.

Why a Carers Needs Assessment is Important

• The 2011 JSNA highlighted the health of carers as a priority

• We don’t know enough about need to define the resource needed in Bromley

• The numbers of carers are rising

Stage One of the Needs Assessment

• Identify the numbers of carers in Bromley• Make an assessment of the unmet need in

terms of carers• Identify the characteristics of carers • Describe the trends in numbers and types of

carers• Describe the demand for carer services

What We Know About Carers

• 28,000 Carers in Bromley (2001 census)• 4000 carers on Carers Bromley Database• 2000 carers on LBB carers database

Not Much!

What We Don’t Know About Carers

• Age• Sex• Ethnicity• Geographical Location• Type of Caring• Numbers Accessing Services

The useful stuff

Information Issues

• A number of organisations in Bromley hold information on carers (approx. 40)

• Some carers appear on more than one database

At the moment we can’t tell who is on more than one database

Easy Solution

• Compare the details of individuals on each carers database to identify duplicates and so establish numbers and be able to describe their characteristics.

Seems straightforward…..

Why the Easy Solution is Not Possible

• It involves the sharing of Person Identifiable Data (PID)

• This is regulated by the Data Protection Act

• Person Identifiable Data (PID) should generally only be used where there is a direct care-related need to use such data

Person Identifiable Data (PID)

• Any data, or combination of data, that can be used to identify an individual

• Name• Address• Date of Birth• Postcode

The Problem

• We need a way of comparing the carers identified on each organisation’s database and identifying duplicates without revealing Person Identifiable Data.

HELP!

A Possible Solution

• PSEUDONYMISATION• Pseudonymisation is the process of disguising

patient identity.

Here comes a demonstration

- fingers crossed everybody

Sample Dataset

Forename Surname DOB Postcode Gender Ethnicity GP Practice Type of Carer

No. of Hours Caring/week Care Need

Alison Kirk 01/01/1955 BR1 5AQ F White British High Street 22 DementiaBarbara Lambert 02/02/1970 BR2 0PL F White British Main Road 60 Learning DisabilityCharles Morris 03/03/2000 SE20 8PR M White British Beech Tree Young Carer 15 Multiple SclerosisDenis Norton 04/04/1942 BR5 3AF M White British Sunny Park 80 DementiaEsther Jackson 05/05/1938 BR5 2NW F White British Central Mutual Carer 84 Heart FailureFrancis Preston 06/06/1961 BR4 9NP M Black African Village Green 100 CancerGeorgina Rayner 07/07/1941 BR3 6SS F White British Spring Lane 14 Sensory ImpairmentHelen Simpson 08/08/1980 BR2 9DZ F White British High Tower 35 QuadriplegiaIan Toeng 09/09/1950 BR2 7NN M Chinese Mayflower 24 StrokeJames Vernon 10/10/1987 BR1 3DG M White British Happy Avenue 16 Cystic Fibrosis

Concatenation

Forename Surname DOB Postcode Gender Ethnicity GP Practice Type of Carer

No. of Hours Caring/week Care Need LSOA Concatenation

Alison Kirk 01/01/1955 BR1 5AQ F White British High Street 22 Dementia E01000819 AlisonKirk01011955BR15AQ

Barbara Lambert 02/02/1970 BR2 0PL F White British Main Road 60 Learning Disability E01000676 BarbaraLambert02021970BR20PL

Charles Morris 03/03/2000 SE20 8PR M White British Beech Tree Young Carer 15 Multiple Sclerosis CharlesMorris03032000SE208PR

Denis Norton 04/04/1942 BR5 3AF M White British Sunny Park 80 Dementia E01000790 DenisNorton04041942BR53AF

Esther Jackson 05/05/1938 BR5 2NW F White British Central Mutual Carer 84 Heart Failure E01000730 EstherJackson05051938BR52NW

Francis Preston 06/06/1961 BR4 9NP M Black African Village Green 100 Cancer E01000839 FrancisPreston06061961BR49NP

Georgina Rayner 07/07/1941 BR3 6SS F White British Spring Lane 14 Sensory Impairment E01000830 GeorginaRayner07071941BR36SS

Helen Simpson 08/08/1980 BR2 9DZ F White British High Tower 35 Quadriplegia E01000763 HelenSimpson08081980BR29DZ

Ian Toeng 09/09/1950 BR2 7NN M Chinese Mayflower 24 Stroke E01000764 IanToeng09091950BR27NN

James Vernon 10/10/1987 BR1 3DG M White British Happy Avenue 16 Cystic Fibrosis E01000678 JamesVernon10101987BR13DG

Pseudonymisation Process 1

Pseudonymisation Process 2

Pseudonymisation Process 3

Pseudonymisation Process 4

Pseudonymisation Process Adaptations

• The information in any field with a header containing the terms name, address, DOB or date of birth, postcode will be disguised (pseudonymised), the other fields remain readable

• We will be generating a unique field derived from the first name, surname, DOB and postcode; this field will then always be pseudonymised in the same way, so that duplicates may be identified

• We will translate the postcode to its corresponding super output area before sharing the data

Super Output Areas

• Geographical areas – smaller than wards, bigger than postcode areas.

• Average 1500 residents• Not small enough to be classed as person

identifiable data

Super Output Areas

185

183

18727

2

179

181

8

6

165

191

197

152156154

98155

96

153

10166

67

74

128

182

174

141

180

173

138

136

47

48

95

86

859392

79

1

34

5

7

9

10

11

12

13

14

1516

1718 19

20

21

22

23

24 25

26

28

29 30

31

3233

34

35

36

37

38

39

40 4142

43 44

4546

49

5051

5253

54

55 565758

59

6061

6263

64

6568

6970

7172 73

75

7677

7880

8182

83

84

87

88 89

90

91

94

97

99

100

102

103

104

105

106

107 108

109110

111

112 113 114

115

116

117

118

119120

121

122 123

124

125

126127

129130

131

132133134

135

137

139140

142

143

144 145146

147148

149

150151

157

158159160

161162

163

164

166167

168169

170

171

172

175

176177

178

184

186

188

189

190192193

194

195196

Information You Need on Your Database

• First Name*• Surname*• Date of Birth*• Postcode*• Gender• Ethnicity• GP Practice• Type of carer (young, mutual, young adult, older adult)• Number of hours caring• Care need (dementia, learning disability, physical disability, sensory

impairment, mental health problems, dual diagnosis, HIV/AIDS, end of life)

• * essential information

What We Need from You

• Data in an Excel file or csv format• Internet access• Permission for a member of the Public Health

Intelligence Team to run the pseudonymisation process at your premises

No person identifiable data will be taken away from your organisation

Nothing is Perfect

• You may not have all the data we need

We will need to make some compromises

Nothing is Perfect

• The data can be depseudonymised using an access code

• Only the original data owner and the pseudonymisation system administrator have the access code

• There is an audit trail showing episodes of depseudonymisation

De-Pseudonymisation 1

De-Pseudonymisation 2

Audit Trail

We Will Need an Agreement

• You trust me to handle the data• I and my team promise not to

depseudonymise your data without your permission

• I will make the audit trail information available to you as needed

Time for questions