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Southern Institute for
Health Informatics

2012 Conference

Your Data, My Data, Our Data

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Wednesday 5 September 2012

SIHI 2012

Wednesday 5 September 2012

University of Portsmouth

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Tel: 023 9284 6445



Biographical notes


Dame Fiona Caldicott

Chair, National Information Governance Board for Health and Social Care

Fiona Caldicott

Dame Fiona Caldicott FRCP, FRCPsych, FMedSci, is the Chairman of the Oxford University Hospitals NHS Trust, and was appointed Chairman of the National Information Governance Board in June 2011 until 2013. This year she is undertaking an independent review of information governance for the Secretary of State for Health.

As President of the Royal College of Psychiatrists (1993-1996), she was also Chairman of the Academy of Medical Royal Colleges (1995-1996).  From 1996-1997 she chaired the Caldicott Committee on patient identifiable data for the National Health Service Executive, leading to Caldicott Guardians being appointed in all providers in the NHS. 

She was Principal of Somerville College in the University of Oxford from 1996-2010, and served as Pro-Vice-Chancellor (in the University) with responsibility for Personnel and Equality.

She is on the Council of Warwick University and of the United Nations University.

Balancing protection and exploitation of patient data

There is increasing recognition that information has a huge potential to improve care and health outcomes.  It is a widely shared ambition that information from care records will be used to improve everyone’s health, to improve care services, to support research leading to more effective treatment, and to ensure that money is spent wisely on health and care.  At the same time patients and clients give staff in health and social care personal and confidential information about themselves all the time, and trust that we will protect the information they give.

The Information Strategy, ‘The Power of Information’, points to the need to make sure there is an appropriate balance between the protection of confidential and identifiable information in our health and care records and the use and sharing of information to improve the quality and safety of care and for the benefit of wider society.  This is an ongoing issue for patients and service providers.

The Caldicott 2 review, To Share or Not to Share, was established in response to this challenge, to consider how to ensure that we improve the sharing of personal information to support the care of individuals; enable further use of information more widely to improve health and social care services; protect individuals’ confidentiality and respect their wishes in relation to how their information is used.

The presentation will give insight into the broader strategic issues of sharing information, the review process and the early findings.

Peter Knight

Deputy Director, Research Information and Intelligence, Department of Health

Peter Knight

Peter Knight is a Deputy Director, Head of Research Information and Intelligence in the Research and Development Directorate at the Department of Health with responsibility for policy and delivery of research information and intelligence, which includes Research Capability Programme. Peter joined the Department in April 2010 having established the Programme in 2008 in NHS Connecting for Health.

Prior to his current role Peter was a Managing Director and interim Chief Executive at Winchester and Eastleigh Health NHS Trust.  Peter helped put the Winchester and Eastleigh Healthcare NHS Trust on the map as one of the first to trusts to switch over to the NHS Care Records Service. Prior to joining Winchester and Eastleigh Health NHS Trust, Peter worked for the NHS Information Authority at the very inception of the National Programme for Information Technology he joined from Microsoft.

Peter was involved with Local Government before working in health including working with the Banham Commission on local government re-organisation in the 1980’s.

The research information landscape

The research information landscape has been developing substantially over the last few years and with changes in the structure of health delivery there is greater opportunity to strengthen use of NHS data to support the research evidence base. By strengthening the research evidence base patient will get better choice in novel treatment, with quicker access.

The talk will cover the emerging jigsaw of the developing landscape for research information, look at the opportunities to maximises the national and local initiatives, discuss the importance of the citizen contribution to this arena, think about the resulting benefits to the individual and the population.

Dr Robert Lewis

Consultant Nephrologist, Portsmouth Hospitals NHS Trust

Robert Lewis

Dr Robert Lewis MD, FRCP, graduated from Westminster Medical School in 1984. His renal training was undertaken at Barts, Kings College Hospital and Guy’s Hospital. He completed his MD thesis at Guy’s in 1996.

Robert was appointed as consultant nephrologist to the Wessex Renal and Transplant Unit (now based at Queen Alexandra Hospital) in 1997 and was appointed as Clinical Director 2001-2008. Since then he has worked to augment the research base of the unit. His clinical practice is based in Portsmouth and Chichester. His professional interests include improving the interface between nephrologists and heath professionals in primary care, particularly with respect to the management of early chronic kidney disease (CKD).

Robert is a founder member of the national CKD Forum and is renal specialty lead for the Hampshire and Isle of Wight Research Network.

Patient-clinician partnership in the management of chronic disease: clinical experience with Renal Patient View

Numerous studies have shown that outcomes for people with chronic kidney disease (CKD) improve where patients are empowered to take an active role in managing their condition. Individuals with kidney failure need considerable knowledge about CKD, dialysis and transplantation to navigate through the various choices they are required to make. They often want to become actively involved in their care and appreciate being privy to the blood results and clinical opinions which guide management of their condition.

Renal Patient View is a system which allows renal patients to have on-line access to their hospital records so that they can peruse blood results and clinic letters at will. It is now available throughout the UK and targets for its uptake are now included amongst the quality indicators (CQUINS) which effect the income of renal units.

This presentation describes how Renal Patient View is being used in the clinical environment and how it has affected patient care and use of clinical resources.

Professor Gary Smith

Visiting Professor, Centre of Postgraduate Medical Research & Education, School of Health & Social Care, Bournemouth University

Gary Smith

Professor Gary Smith graduated from Southampton University (1977) and was a Consultant in Critical Care at Portsmouth Hospitals (1986-2011). He is a Visiting Professor at Bournemouth University.

Gary has a long-standing interest in the early recognition of, and the response to, patient deterioration. He was instrumental in educational initiatives by the UK Royal Colleges to improve ward staffs' knowledge and skills of recognising and managing deterioration. He has contributed to reports by UK bodies (NPSA, NICE, DH, Royal College of Physicians) regarding vital signs monitoring; acute care competencies and early warning scores. He also led the clinical team that developed a hand-held, computer-based system (VitalPAC) for the early recognition of patient deterioration, for which the team has won several awards. Data collected through VitalPAC has been used to develop NEWS - the UK's National Early Warning Score. Gary was named ‘NHS Innovator of the Year’ in the NHS Leadership Awards 2010.

National Early Warning Score - from local data to national guidance

A report by the Acute Medicine Task Force of the Royal College of Physicians of London (RCPL) recommended that “. . . physiological assessment of all patients should be standardised across the NHS with the recording of a minimum clinical data set resulting in an NHS early warning score (NEW)...” Using a database of 198,755 data sets from 35,585 completed and consecutive patient episodes at the medical assessment unit of Portsmouth Hospitals NHS Trust, a new early warning score [VitalPACTM EWS (ViEWS)] was developed locally and was modified under the auspices of the RCPL to become the new national score.

Dean White

Head of Commercial & Portfolio Management, Health and Social Care Information Centre

Gary Smith

Dean White is Head of Commercial & Portfolio Management at the Health and Social Care Information Centre (HSCIC). Dean is a health information specialist with over 20 years NHS experience, the last 16 of which have been working at a national level, leading, managing and contributing to a wide range of national information programmes and initiatives.

Dean led work for the HSCIC on its adoption of the 2005 Re-Use of Public Sector Information Regulations and worked with the Cabinet Office and Department of Health on Making Public Data Public and the early Open Data initiative. He is a member of HM Government's Advisory Panel on Public Sector Information (APPSI).

How the Information Centre is responding to the challenge of Open Data and Transparency in a changing policy landscape

The NHS Information Centre (Health and Social Care Information Centre - HSCIC) has been in the vanguard of the Government's Transparency, Open Data and Re-Use agenda's  for several years. Working with the Office of Public Sector Information and more recently with the Cabinet Office, the HSCIC has both led and influenced the release of an increasingly wide and diverse range of health and social care data to help to meet the goal of creating a vibrant health and social care information market. 

The talk will set out the current and emerging context for Open Data, discuss some of the challenges to greater openness and share some of the lessons learned by the HSCIC as it responded to the corporate challenges presented by these initiatives.

Dr Robert Stewart

Clinical Informatics academic lead, SLAM NIHR Biomedical Research Centre for Mental Health

Robert Stewart


Developing an EHR-derived data resource for mental health research: the SLAM BRC Case Register

There are widely recognised research benefits to be gained from utilising electronic health record (EHR) data, and widely recognised governance challenges associated with doing so. In 2008, with NIHR funding, the Clinical Record Interactive Search (CRIS) application was developed which removes identifiers (including those in free text fields) from the electronic health record for the South London and Maudsley NHS Foundation Trust (SLAM), a large mental health service provider. With search and database assembly functions, CRIS allows real-time researcher access to over 180,000 case records. A key feature of CRIS has been patient-led governance from its inception to its ongoing application, project approval and oversight. Subsequent developments in CRIS have included secure linkages to external datasets, the application of information extraction software to derive data from text fields, and the development of an NIGB-approved protocol for routine obtaining of consent for de-anonymisation and direct researcher contact.

Adrian Byrne

Director of IM&T, University Hospital Southampton NHS Foundation Trust

Adrian Byrne

Adrian Byrne is the Director of IM&T for University Hospital Southampton NHS Foundation Trust. He has been in this role for eight years during which a strategy has been pursued to deliver an integrated electronic care record. This has largely been achieved through connecting up systems that fulfill different functions for the Trust such as patient administration.

The electronic ordering of tests and investigations (Order communications) has been rolled out to 100% of Trust activity and ePrescribing and drugs administration is currently being implemented. The Trust has made good use of interfacing technology over the years and has a rich source of well linked and structured information, both through direct access to system platforms and via a corporate data warehouse. Like many health organizations however it also has a mass of largely unstructured data in the form of text that can be linked in patient terms but not analysed at a data item level. In addition, paper casenotes are still the primary means of clinical noting for inpatients and this presents a challenge that must be overcome in the next few years.

Innovative pharmaceutical re-use of operational NHS data

UHS started to combine data in a single clinical data model in the late nineties with a systems programme that was developed in a modular way. The rate of creation of this data has increased to

  • 1.4m clinical orders per annum
  • 0.8m documents per annum (7m available for analysis)
  • 0.2m detailed clinical records created in specific modules per annum

In 2011 UHS was approached by CSC with a proposal to test a concept to apply anonymization and search technologies to sets of clinical data using a product from the US called Cliniworks Accelfind. The proposal was to take a large set of clinical documents, de-identify them and then to apply clinically contextual search techniques within the Accelfind engine to pull out records matching required criteria. The objective was to assess whether this would be a suitable way to identify patients for clinical trial.

Within the project, no data has left the UHS infrastructure.

Tim Davies & Professor Susan Halford

Faculty of Social Science, University of Southampton

Tim Davies

Susan Halford

Tim Davies is a PhD student in the Web Science Doctoral Training Centre and the Faculty of Social Science at the University of Southampton where his work explores the impacts of open government data policies. He recently co-edited a special issue of the Journal of Community Informatics on Open Government Data. He blogs at

Susan Halford is Professor of Sociology at the University of Southampton. Her research interests centre on everyday work and organization, particularly in the context of social and organizational change and her current work explores digital innovation in the organization and delivery of healthcare services both in the UK and Norway. She is member of the Steering Group and the Curriculum Innovation Group for the Southampton Web Science DTC.

Seeking a clear view of data

This paper aims to situate personal health data, and the opening of health records for research, within the wider context of the 'data deluge', comprised of every greater quantities of diverse data including raw data, real time data, big data and open data and linked data. Using a socio-technical lens, we outline the need for clarity in understanding the forms of data available, their potential uses for healthcare, and the respective issues that these types of data raise in terms of privacy, utility, information governance and semantics. Drawing on examples from within, and beyond, the healthcare field, we will explore how the development, and opening, of databases and data-based systems impacts upon practice, and look at what it takes to 'make data work' in driving change. We pay particular attention to the interaction of personal health data, and increasing the accessibility of health data for research, with the governments current open data agenda.

Dr Kieron O'Hara

Senior Research Fellow, Faculty of Physical and Applied Sciences, University of Southampton

Kieron O'Hara

Kieron O'Hara is a senior research fellow in Electronics and Computer Science at the University of Southampton, researching into the politics and philosophy of computing, focusing on problems of trust and privacy on the World Wide Web.

Kieron is the author of a number of books, including Trust: From Socrates to Spin, and The Spy in the Coffee Machine: the End of Privacy As We Know It; his latest book is Huxley: A Beginner's Guide (2012).

He is the author of a report on transparency and privacy for the Cabinet Office, Transparency Government, Not Transparent Citizens (2011), chairs the Transparency Sector Panel for Crime and Criminal Justice for the Home Office and Ministry of Justice, and sits on the steering group developing a code of practice for handling confidential information, for the NHS Information Centre.

Trust and open data: benefits, risks and governance

The potential of open data for empowering citizens, holding governments to account and creating economic growth is high. However, given the importance in all these applications of data derived from personal data, it is essential that governance structures are in place for safe and effective handling of data, for example to ensure against breaches of privacy. This talk considers how we assess the threat and level of risk, and what structures are needed to preserve trust in open data.

Andrew Trew

Head of Systems Development, Axon UK

Andrew Trew


Simplifying community based data collection, interpretation and feedback

It is widely accepted that data generated by a patient or their carers needs to be interpreted and shared as soon as possible after being collected, to provide timely interventions in treatment and give appropriate feedback to the patient. Further, it is a common frustration with healthcare professionals that data collected in one care setting is not available to the next healthcare professional (HCP) seeing the patient.

The barriers cited by clinicians and researchers to achieving this objective included:

  • Shared resources stop at the boundaries of each organisation in the healthcare community or different clinical settings within a hospital.
  • Data was not in the form that the HCP requesting the information wanted it
  • Data was not received in a timely manner i.e.  when it was wanted
  • Data was not sent where it was want it e.g. into another system

It is generally accepted that a patient’s quality of care is greatly enhanced by:

  • Continuous monitoring e.g. remote monitoring of chronic disease
  • Follow-up communications and feedback e.g. questionnaires and feedback reports

However, the health community is often paper based, systems do not interoperate and the feedback is too slow to adapt the treatment appropriately.

Solving this problem requires empowering the health professional with accessible tools that put them in control of what is collected and how it is collected, displayed and analysed while protecting the data and respecting the individual’s privacy. 

However with this devolution of control, the data ownership and access has to be thought about in a new and innovative way.

Dr Tapio Jokinen

Founder and Board chairman, Medixine Ltd

Tapio Jokinen

Dr Tapio Jokinen MD graduated from Helsinki University School of Medicine in 1983 where he also had his specialist training in clinical neurophysiology. He has worked as a consultant at the Helsinki University Hospital, at the Finnish Central Military Hospital in Helsinki and as a founding partner in the leading private clinical neurophysiology laboratory in Finland.

Dr Jokinen has a longstanding interest in the use of IT in healthcare. In 1994 he founded Medixine Ltd, a company specialised in communication solutions for healthcare providers and their customers. The company has been one of the pioneers in using outbound automatic phone calls and text messaging in population based e-services, for instance in the Healthy Outlook health forecasting service in the UK. For the past ten years more and more emphasis has gone into development of a new PHR (Personal Health Record) concept and product.

This has culminated in the selection of the Medixine PHR as the national PHR solution in Finland and launch of the product in the EU, US and Australia.

Learning from the Personal Health Record in Finland

Personal health records (PHRs) have been in use for over a decade but have not yet found their way into large scale daily care. As a potential solution an enhanced PHR system will be presented with emphasis in  communication between care providers and customers and automatic guidance and coaching of patients.

A new way of providing automatic population level health screening using a PHR is discussed as well as the background and present stage of the Finnish national PHR project based on the same technology.

Programme content and timings are subject to change.


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