Improving access to health and social care information

Statistics User Forum meeting 18 February 2007 Dr Pam Westley

Format for today

Introduction The Information Centre Balancing access with protection Where we are now The IC vision for the future Some steps on the way Hearing your views

The Information Centre

Background

The Information Centre for health and social care (The IC) – based in Leeds - was created in April 2005 out of the former NHS Information Authority and the Department of Health Statistics Unit.

The IC is a special NHS health authority created to collect, analyse and distribute facts and figures for health and social care communities in England.

Our overriding aim is to put information at the heart of decision making for front line staff, providing better services for patients and clients.

The Information Centre strategy

The Information Centre values

The Information Centre services

The Information Centre statistical services

Principles underpinning our work

Collect data once only, use them many times

be temperate in data requests – no data collection for the sake of it share data across agencies identify key data needs and reduce response burden promote access to data within appropriate frameworks develop data policies avoid ignorant duplication, permit deliberate replication, ensure that the value of the data is commensurate with the

resources used to collect it deliver the data back to the providers

The key principles of good information

Valued –accepted as having authority and value. People understand it and are prepared to exchange it to achieve mutual benefits

Straightforward to collect –a natural and expected by-product of providing and using health and social care

Meaningful –always have relevance to its users, such that it improves and adapts to the way it is used to fulfil different purposes at different times

Easy to access –be available to people who need it when they need it, within clear rules of access, ensuring compliance with all confidentiality and security aspects of data access

Used –acquires value when it is used in the process of making decisions and achieving positive results

The Information Centre aims to

Work collectively to transform the flows of information, transform attitudes towards information and the ways people use it

To improve quality, fairness and efficiency in

health and social care

Balancing access with protection – Protecting personal information

Data Protection ActSection 60 of the Health and Social Care Act Patient Information Advisory GroupSecurity and Confidentiality Advisory GroupCare Record GuaranteeStatistical disclosure controlsRole-based access to NHS information systems

Balancing access and protection- Accessing information

Freedom of Information Act Copyright and licensing Re-use of Public Sector Information Regulations Reducing burden initiatives Key questions

Who wants access? And to what? Is person-identifiable data always necessary?

Access Protection

Who is the information for?

Patients and service users Commissioners

The public

Policy makers

Providers

Managers and regulators

Tension between local and national needs

Ideal situation: the same information of value in serving both national and local needs, to reduce burden of data collection

Worse situation: national needs distort local priorities and demands are made for associated data collection without consideration of local resource implications

Where are we now?

overlapping data collections are constructed to fulfil different purposes

data collected to fulfil one purpose fails to meet another purpose

data are not standardised or collated at national level to enable comparisons to be made

data are not organised for ease of use people find it hard to access data and information fear of how data will be used stops it being shared or even

collected ‘perfect’ data fails to provide useful information

Changing strategic context provides golden opportunity to change

What is the IC doing to improve access?

Promoting and developing consistent and transparent principles for data access and information sharing for IC information

Developing as a pro-active honest information broker for health and social care

Partnership working with Connecting for Health to harness technology to share and protect NHS data

New services: Secondary Uses Service Information Catalogue

Knowledge services to translate data and information into knowledge

IC vision for data access and information sharing

Code of openness for all IC information Responding to all information requests quickly, helpfully and

transparently

Data access policy for all IC held data All requests treated on a fair and equal basis Providing information that meets user needs, is objective, meets

professional standards and is in accordance with relevant legislation, guidance and standards

Release practices to meet National and Official Statistics standards Impartial, independent, trusted and professional statistics

Information sharing of personal information Facilitating access for users, maximising the use of information

while protecting individuals confidentiality

Pro-active information broker for health and social care

Understanding and anticipating the nature of decisions across all

levels of the health and social care system

Translating these into comparative information needs

Mapping current availability and quality of information

Working in partnership with others to reduce duplication and fill the gaps

Ensuring that data are properly managed, supported, shared and made

more accessible in a timely way

Setting and promoting standards in data collection and use

Strengthening capacity for informed decision making especially through

the use of comparative information and associated products

Knowledgeable about health and social care information

Secondary Uses Service Overview

SUS is a central repository of health data for management and clinical purposes other than direct patient care e.g. care planning, policy development and R&D

It is being delivered as part of the National Programme for IT, with The IC working jointly with NHS CfH to define user needs and provide user support

The existing Hospital Episodes System is being integrated into SUS, as is access to Mental Health Minimum Datasets

SUS is a live service already providing support for PbR and access to CDS data. In future releases, SUS will include supporting demographic data and will provide support for the analysis of national clinical audit information (see www.cfh.nhs.uk/sus)

Benefits Access to national data covering NHS commissioned care Safeguards to improve data quality and consistency of recording Tools which allow users to extract data for their particular needs Capture of data from other operational systems and simplified data submission Security measures to ensure the confidentiality of identifiable information

Information Catalogue

The Catalogue is a single point of reference of current and proposed national data collections relating to health and social care

It provides a searchable summary of over 600 national information collections relating to Health and Social Care

Significant work programme underway to broaden scope & depth of information provided

Already established as a cornerstone in enabling co-ordination of and reduction in collections.

Developing knowledge management services around the Catalogue

Vision is for the Information Catalogue to be the prime reference source for

all data available on Health & Social Care

Available to all at http://www.ic.nhs.uk/infocat

Summary

Access arrangements are currently complicated and difficult to navigate

The IC is uniquely placed to provide greater consistency and transparency of access and sharing across health and social care

Starting with its own information services and building new services such as SUS and the Information Catalogue

Moving from data and information to knowledge to support information use

Striving to put information at the heart of decision-making in health and social care

But what are your ideas for improvement? To find out more visit the Information Centre website http://www.ic.nhs.uk