Carers’ Needs Assessment Data Issues Dr Agnes Marossy Consultant 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

Concatenation

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

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