Centre Overview

Full Title
Health Information Research Unit (HIRU)

Value
£2,561,000 (Research projects involving HIRU have a value of over £35,000,000) 

Funder
National Institute for Social Care Health Research Clinical Research Centre, Welsh Government

Lead
David Ford (Swansea University), Professor Ronan Lyons (Swansea University)

Team
Professor John Williams (Co-applicant), Professor Keith Lloyd (Co-applicant), Dr Kerina Jones (Co-applicant), Dr Sinead Brophy (Senior Lecturer), Dr Sarah Rodgers (Lecturer), Dr Shangming Zhou (Lecturer), Caroline Brooks (Senior Research Analyst), Michelle Grey (Research Assistant), Martin Heaven (Senior Research Analyst), Dr Mark Atkinson (Research Assistant), Richard Charlton (Research Assistant), Dr Joanne Demmler (Research Assistant), Dr Melanie Hyatt (Research Assistant), Arron Lacey (Research Data Analyst), Dr Olly Lyttleton (Research Officer), Dr Steven Macey (Research Assistant), Dr Cito Maramba (Research Assistant), Alun Matthews (Research Analyst), Jo McGregor (Research Assistant), Dr Mohamed Mhereeg (Research Data Analyst), Kelly Morgan (Research Assistant), Dr Jeffrey Peng (Data Visualisation Research Analyst), Leila Pinder (Research Assistant), Dr Muhammed Rahman (Research Assistant), Sam Turner (Research Assistant); Simon Ellwood-Thompson (Chief Technology Officer), Mihaela Barbu (Software Developer), Dr Justin Biddle (Software Developer), Rohan Dsilva (Data Warehouse Manager), Chris Jones (Software Developer), Ryan Lever (Software Developer), Cynthia McNerney (Information Governance Coordinator), Sarah Jones (Administrator & Financial Controller), Pam Carrington (Secretary), Sylvie Morgan (Secretary)

External Academic Collaborators
Bristol University, Cardiff University, Monash University Australia, Queen Mary University of London, University College London, The University of Western Australia

Website
http://hiru.swansea.ac.uk/

Background
The Health Information Research Unit (HIRU) for Wales is an initiative developed by the College of Medicine at Swansea University.  The main aim of HIRU is to realise the potential of electronically held, person based, routinely collected information for the purposes of conducting and supporting health related research.   HIRU works collaboratively with researchers and service professionals to conduct and support research and to improve service delivery.  

Aims & Objectives
The core of HIRU’s work is data linkage: bringing together person-level data drawn from operational and national systems and, using a novel anonymisation process, linking datasets together to form a rich information base. Data sources are not restricted to health and include many other settings, including social services, housing, transport, and education. HIRU has established the Secure Anonymised Information Linkage (SAIL) system with over 2 billion anonymised person-based records loaded to date representing a valuable and unique national resource for e-health research and evaluation.

The Health Information Research Unit (HIRU) for Wales harnesses the potential of routinely collected electronic data to support and undertake research by:

• Developing new methods for accessing and combining routine data
• Devising ways to use routinely collected data to support large scale studies
• Developing innovative approaches to knowledge discovery from the analysis of large and combined datasets
• Developing methods for research data capture to common standards and definitions in multiple and remote location

Management Team & Committees

HIRU Management Team

David Ford, Co-Director

Professor Ronan Lyons, Co-Director

Simon Ellwood-Thompson, Chief Technology Officer

Dr Kerina Jones, Senior Research Development Fellow

Caroline Brooks, Senior Research Analyst

Martin Heaven, Senior Research Analyst

Cynthia McNerney, Information Governance Coordinator

Advisory Board

The HIRU Advisory Board is comprised of leaders in the field of health information and research in Wales, its aims are:

• To ensure HIRU's work remains in harmony with developments in information strategy for health and social care in Wales and the UK
• To maximise HIRU's ability to conduct and support research
• To ensure HIRU's work, meets the health and wellbeing needs of people in Wales, in line with Welsh Government
• Discuss and support the sustainability of HIRU, including discussing opportunities for supporting the funding of HIRU

Consumer Panel

HIRU includes service user and carer representation on strategic committees and research study steering groups to ensure that the interests of service users and carers are properly acknowledged.  HIRU have a dedicated consumer panel to:

• Act as an advisory panel to HIRU on issues in research from the perspective of service users and carers
• Provide HIRU with the service user/carer view on data protection issues
• Advise on how best to engage with the public/service users and carers
• Advise on how to recruit people to project steering groups
• Discuss proposals for projects and receive updates on research findings

Research Projects

HIRU is engaged in a wide range of externally funded research studies, leading or collaborating with components of the Welsh research infrastructure and other research groups from across the UK. These projects include a range of study types, including: establishment and maintenance of cohorts, clinical trials, exploratory studies, methodology/informatics projects and public health/epidemiology studies.

HIRU is a key component of prestigious research centres such as Centre for the Development and Evaluation of Complex Interventions for Public Health ImpRovement (DECIPHer)  and Wales Institute of Social & Economic Research, Data & Methods (WISERD) and is an integral part of a range of other large-scale studies.

Other projects include:

• A pilot study of health and environmental data linkage for Welsh UKBiobank participants
• A pilot study to establish the feasibility of an all Wales psychosis cohort with electronic record linkage (PsyCymru)
• A Population-based Ankylosing Spondylitis [PAS] cohort
• An exploratory study of the human geography of suicide and its relationship to place in Wales (GoS) 
• Analysis of risk outcomes for cardiac conditions (for MINAP)
• Assessment of the Free School Breakfast Initiative (FSBI)
• Biomedical Informatics in Biomarker Discovery and Validation
• Database of Uncertainties about the Effects of Treatment (DUETs)
• Grand Challenges in Information-Driven Healthcare 
• Health Informatics Trial Enhancement project (HITE)
• In-depth study of trends in fatal accidents
• Influences on psychosocial and physical health in early adulthood: phenotypic enrichment of the ALSPAC cohort through linkage to primar care electronic patient records and other databases
• Integration of European Injury Statistics (INTEGRIS) 
• Investigation of the feasibility of using routine data to monitor quality and inform choice 'Routine data audits in gastroenterology: IBD and upper GI bleed'
• Multidisciplinary Computer-Human Interaction research for the design and safe use of interactive medical devices (CHI+MED)
• Review of Injury Severity Classification
• Risk of hospital admission and cause-specific mortality associated with common mental disorder: the Caerphilly Health and Social Needs electonic cohort study
• SAFER 1: Support and Assessment for Fall Emergency Referrals
• SAFER 2: Support and Assessment for Fall Emergency Referrals 
• The Health Informatics Trial Enhancement Project (HITE)
• UK Multiple Sclerosis Research Study
• Under-reporting of road casualties - Phase 1
• Using routine data to estimate service need for Common Mental Disorders in Primary Care (MINISAIL)
• Wales Electronic Cohort for Children (WECC)

Selected Publications

Lyons RA, Kendrick  D, Towner EM, Christie N, Macey S, Coupland C, Gabbe B. Measuring the population burden of injuries: implications for global and national estimates. A multi-centre prospective longitudinal study. PLoS Medicine (Accepted in 2011)

Rodgers SE, Demmler JC, Dsilva R, Lyons RA. Protecting health data privacy while using residence-based environment and demographic data. Health & Place. Published online 28 September 2011. DOI:10.1016/j.healthplace.

Gabbe BJ, Harrison JE, Lyons RA, Jolley D. Modelling Long Term Disability following Injury: Comparison of Three Approaches for Handling Multiple Injuries. PLoS ONE 2011; 6(9): e25862. DOI:10.1371/journal.pone.

Gabbe BJ, Lyons RA, Lecky FE, Bouamra O, Woodford M, Coats TJ, Cameron PA. Comparison of mortality following hospitalisation for isolated head injury in England and Wales, and Victoria, Australia. PLoS ONE 2011; 6(5): e20545.

Reilly R, Paranjothy S, Beer H, Brooks CJ, Fielder H, Lyons RA. Birth outcomes following treatment for precancerous changes to the cervix: a population based record linkage study. BJOG: An International Journal of Obstetrics and Gynaecology. Published online 27 July 2011

Atkinson MD, Brophy S, Siebert S, Gravenor MB, Phillips CJ, Ford DV, Jones KH and Lyons RA. Protocol for a population-based Ankylosing Spondylitis (PAS) cohort in Wales. BMC Musculoskeletal Disorders. 2010; 11:197

Brooks CJ, Lyons RA, Jones KH, Hutton AJ, Walker R, Evans KA, Lloyd K, and Ford DV. The prescribed duration algorithm: utilising “free text” from multiple primary care electronic systems. Pharmacoepidemiology and Drug Safety 2010; 19:983-89

Hutchings H, Barnes PM, Maddocks A, Lyons R and James-Ellison MY. Burns in young children: a retrospective matched cohort study of health and developmental outcomes. Child: Care, Health and Development. 2010; 36:787–794. DOI: 10.1111/j.1365-2214.2010.01106.

McGregor J, Brooks C, Chalasani P, Chukwuma J, Hutchings H, Lyons RA, Lloyd K. The Health Informatics Trial Enhancement Project (HITE):  Using routinely collected primary care data to identify potential participants for a depression trial. Trials 2010; 11:39. doi:10.1186/1745-6215-11-39

Rodgers SE, Jones SJ, Macey S, Lyons RA. Using GIS to assess the equitable distribution of traffic calming measures. Injury Prevention 2010; 16:7-11. DOI:10.1136/ip.2009.022426

Ford DV, Jones KH, Verplancke JP, Lyons RA, John G, Brown G, Brooks CJ, Thompson S, Bodger O, Couch T, Leake K. The SAIL Databank: building a national architecture for e-health research and evaluation.  BMC Health Services Research. 2009; 9:157 doi:10.1186/1472-6963-9-157.

Rodgers SE, Lyons RA, Dsilva R, Jones KH, Brooks CJ, Ford DV, John G, Verplancke JP. Residential Anonymous Linking Fields (RALFs): A Novel Information Infrastructure to Study the Interaction between the Environment and Individuals’ Health. Journal of Public Health. 2009; (4):582-8. Published online 15 May 2009. DOI:10.1093/pubmed/fdp041.

Lyons RA, Jones KH, John G, Brooks CJ, Verplancke JP, Ford DV, Brown G, Leake K. The SAIL databank: linking multiple health and social care datasets. BMC Medical Informatics and Decision Making 2009; 9:3. 

Rodgers SE, Lyons RA, Dsilva R, Jones KH, Brooks CJ, Ford DV, John G and Verplancke J P. Residential Anonymous Linking Fields (RALFs): A Novel Information Infrastructure to Study the Interaction between the Environment and Individuals' Health. Journal of Public Health, 2009, pp. 1-7.

Brooks CJ, Stephens JW, Price DE, Ford DV, Lyons RA, Prior SL and Bain SC. Use of a patient linked data warehouse to facilitate diabetes trial recruitment from primary care. Primary Care Diabetes. 2009; 3(4):245-8.

For a full list, please click HIRU Research Publications

Working with SAIL

All proposals to use SAIL data must comply with Information Governance. Information Governance is a framework for handling information in a confidential and secure way to ensure that the necessary controls are in place for the safe and appropriate use of patient and personal information.

To apply to use SAIL data please contact Cynthia McNerney, HIRU Information Governance Coordinator c.l.mcnerney@swansea.ac.uk who will send you a Data Access Agreement and HIRU Enquiry Form.

The applicant must complete the Enquiry Form with details of the proposed study, the team will be happy to provide advice on completing the application. Please return completed form and a copy of study protocol, plus the signed data access agreement to Cynthia McNerney.

Once the required information has been received, the proposal will be reviewed by the HIRU Management Team and the Information Governance Review Panel (IGRP). If the application is successful, the applicant will be provided with a user account and data access based on the requirements of the proposal in order to proceed with the study. If the application is unsuccessful, the HIRU team will provide feedback on how it could be revised, and will advise on an appropriate alternative approach, where possible.  

Information Governance

Robust Information Governance arrangements and open, fully documented processes, underpin all areas of our work and provide the keystones for progress in this new and challenging field. HIRU has created a powerful suite of approved privacy-protecting technologies and approaches, bound together as a rigorous, operational system, and controlled by a set of Standard Operating Procedures, with regular independent audit, to assure all those involved that HIRU's work is of the highest standards in relation to information governance. As a result, HIRU has been able to work with a wide range of Data Providing Organisations (DPOs) to safely provide their data into the SAIL databank, thus establishing a world-leading, and rapidly growing resource of routine data for health research.

Collaboration Review System

The main purpose of the HIRU Collaboration Review System (CRS) is to review enquiries from researchers and service professionals wishing to utilise the SAIL databank. There are two main components to the CRS and these are, assessment by:

• HIRU Management Team - to consider the feasibility, practicality and resource implications of the proposal
• The Information Governance Review Panel (IGRP) - which provides independent advice to HIRU to ensure proposed work conforms to the principles of information governance. This role relates to individual projects and to the provision of broader information governance advice.

The membership of the IGRP is comprised of senior representatives from:

• British Medical Association (BMA)
• National Research Ethics Service (NRES)
• Public Health Wales
• NHS Wales Informatics Service (NWIS)
• Involving People

SAIL Datasets Index

SAIL data sources encompass, but are not restricted to, health and include many other settings, including social services, housing, environment, transport, and education.  The wealth of data afforded by this broad inclusivity ensures that SAIL is able to support innovative, interdisciplinary research that spans traditional boundaries and sectors.

To see all the datasets currently available on SAIL, please click  SAIL databank index (V7)

Collaboration

All HIRU Training Courses and Workshops are run in collaboration with the School of Population Health at The University of Western Australia.

Lecturers delivering the courses and workshops are:

Winthrop Professor D'Arcy Holman, The University of Western Australia

Associate Professor David Preen, The University of Western Australia

David Ford, Swansea University

Dr Kerina Jones, Swansea University

Intermediate Level

Introductory Analysis of Linked Health Data

This is an intensive five-day unit on the theory and practice of analysis of large sets of linked administrative health data at an introductory to intermediate level.

The rapid growth in data linkage projects has led to a shortfall in analyst skills. Some researchers understand epidemiological principles, but are unfamiliar with the specialised computing skills needed to analyse linked data files. Others have a strong grasp of computing concepts, but lack an adequate theoretical base to design high quality applications to answer research questions. This course endeavours to fill a gap in training opportunities to cater to these two areas of need.  The topics covered in the course will include:

• Using linkable registry data in health services research
• Characterising clinical populations using linkable registry data
• Theory and practice of risk adjustment in health services research
• Measuring health services utilisation and evaluating outcomes

Advanced Level

Advanced Analysis of Linked Health Data

The course assumes that participants have completed Introductory Analysis of Linked Health Data or have equivalent knowledge arising from basic hands-on experience in the analysis of linked files with multiple and variable numbers of records per individual. The computing component of the unit assumes a facile competence in the preparation of computing syntax for either SPSS, SAS or Stata and familiarity with the statistical analysis of linked data files at an introductory to intermediate level.

The course practice data sets provide health and social researchers with the opportunity to build on their pre-existing theoretical knowledge and skills in the analysis of linked data by exploring a number of advanced topics. Upon completion the participant will:

• have consolidated their grasp of foundation concepts of epidemiology and data analysis
• possess an advanced understanding of methods for the conceptualisation and construction of valid measures and effect measures of health and social services utilisation and outcomes based on complex, multi-sourced linked data sets
• understand complex longitudinal research designs and how to implement them using multi-sourced linked data sets
• understand case distribution designs and how to implement them using multi-sourced linked data sets
• have skills in the analysis of linked mortality, institutional, pharmaceutical and primary care data
• be able to write computing syntax to prepare complex linked data files for analysis, derive exposure and outcome variables, relate numerators and denominators and produce results from advanced statistical procedures.

Two-day Workshop

Information Governance & Data Linkage Workshop

This is an intensive two-day workshop on the principles of information governance in the health and human services sectors and their practical application to data linkage systems.

The rapid development of data linkage facilities has brought with it the urgent need to develop new policy frameworks, operating protocols and technical security measures that facilitate the efficient use of linked data by researchers and also provide robust and accountable systems to comply with regulatory requirements and to achieve even higher levels of data security and protection as a commitment to best industry standards.

David Ford and Kerina Jones from Swansea University in Wales have been working at the forefront of international best practice in information governance and data linkage for a number of years. Their carefully crafted frameworks, protocols and security measures have been put into practice at the SAIL (Secure Anonymised Information Linkage) Databank, which is the recently commissioned national platform for health related data linkage in Wales.

Workshop Outline

David Ford and Kerina Jones will cover the following topics during the two-day workshop: 

• General principles of information governance in the health and human services sectors 
• Elements of comprehensive application of information governance to a data linkage system
• Legal, policy and procedural tools for information governance and security in data linkage systems Computing and other technological tools for information governance and security in data linkage systems Personal identity protection solutions in the presence of low copy number fields
• Risks and benefits of information governance and security from research and privacy perspectives
• The Welsh SAIL Databank as a case study

Learning Objectives

The workshop acquaints administrative decision-makers, data custodians and researchers in the health and human services sectors with the theory and practice of modern information governance methods that are relevant to the design and operation of data linkage systems. It is also suitable for those involved in the development of information systems containing personal information regardless of whether data linkage is an existing feature. Upon completion the participant will:

• possess an overview of the principles of information governance that are relevant to privacy protection and data security in the health and human services sectors
• understand how principles of information governance are applied to data linkage systems, sufficient to be able to develop policy frameworks, operating protocols and technical security measures that are on a par with best international practice
• be aware of the range of different approaches and solutions to information governance and security in data linkage systems
• understand the trade offs that are inherent within decisions about information governance and security and how to optimise synergy between research and privacy outcomes