Yorkshire Centre for Health Informatics

The Future: Overcoming the Barriers to Using NHS Clinical Data for Research Purposes

Mark Hawker, Rick Jones, Susan Clamp, Owen Johnson

Prof Vic Rayward-Smith, University of East Anglia

HC2010 Health Informatics Congress,

Birmingham, 27 April 2010

My Role

• Working as a Research Assistant on:1. UK Faculty of Health Informatics project on “Overcoming barriers

to the safe use of patient data for Research and Development between the NHS and Higher Education”

2. Wellcome Trust, MRC, ESRC, EPSRC project on the “Training and education for the developers of databases in research and clinical practice”

3. UK Faculty of Health Informatics project on “Data Standards and Terminologies: Who Cares?”

• Responsible for recruiting participants and speakers but also validating content and writing up reports.

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Interest in Clinical Data

• UK Government committed to develop research capability of NHS Information Technology

• Secondary Uses Service (SUS) example of source of comprehensive data and includes Hospital Episode Statistics (HES)

• Emergence of electronic records has led to increased interest in how these could be used for research– UK Clinical Research Collaboration-Wellcome Trust (2007) – “Use

of Electronic Patient Records for Research and Health Benefit”– NHS Connecting for Health Research Capability Programme– Office for Strategic Co-ordination of Health Research (OSCHR) E-

Health Records Research Board

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Benefits and Opportunities

• Mayo Clinic – Electronic Medical Record since 2004 – 4,000 clinical trials per year.

• Kaiser Permanente – $3 billion investment in electronic records. Data warehouse with extracted data for research.

• Indiana Health Service – national data repository.• Veterans Health Administration – VistA evolving into new

web-based health data repository.• Denmark

– 200 public datasets– Citizens have unique personal identification number– Large scale cohort studies

• Disproved link between mobile phone use and cancer

• Disproved link between MMR and autism4

Report of Research Simulations

“The UK can significantly enhance its clinical research capability by using, strictly within the bounds of patient confidentiality, the electronic patient data that the UK’s National Programmes for IT in the NHS have the potential to allow. This will have enormous benefits for all types of clinical, public health and health services research and for many aspects of patient care.”

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Current Research Uses of Data

• Clinical trials – safety/effectiveness/cost effectiveness of interventions and treatments

• Identifying participants for clinical trials• Epidemiological studies• Trends/patterns for future research• Surveillance (Pharmacovigilance)

• Numerous databases in use– Disease registries e.g. national cancer registry– General Practice Research Database (GPRD)– Specific research databases

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What Are The Issues?

• Routine data collection in NHS to support clinical care and operational management, not to support research– Disconnected data stores and systems

• Data quality– Manual data entry– Coding– Free text

• Patient identification and record linkage• Confidentiality and security• Transparency

– Clinicians– Researchers

• But also… 7

Our Hypothesis: Knowledge Gap

NHS StaffAcademic

Staff

IT

… the evidence?8

Please indicate your level of knowledge of the following concepts (1):

0

20

40

60

80

100

120

140

160

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200

InformationGovernance

Pseudonymisation Federated Databases SNOMED-CT Read Codes ICD-10

Not Heard Of Heard Of But Not Used Heard Of And Used

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Please indicate your level of knowledge of the following concepts (2):

0

50

100

150

200

250

HL7 Messaging NHS Care RecordsService

Patient DemographicService

SUS LegitimateRelationships

Sealed Envelopes

Not Heard Of Heard Of But Not Used Heard Of And Used10

Please indicate which of these health initiatives you have knowledge of:

0

20

40

60

80

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NHS OperatingFramework

2009/10

InformaticsP lanning2009/10

NHS Next StageReview

Our NHS OurFuture

HealthInformatics

Review

UKCRC"Research

Simulations"

Wellcome Trust"Electronic

PatientRecords"

NHS C&CProgramme

Not Heard Of Heard Of But Not Used Heard Of And Used11

If you could describe clinical IT systems in the NHS using three words, what would they be?

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If you could describe IT systems in the clinical research environment using three words, what would they be?

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Wellcome Training GrantResearch Questions

The plan was to design and validate training courses for clinical research, industrial and NHS informatics staff to aid the exploitation of digital information resources.

1. Can focussed training of academic and NHS database developers/administrators help:

• record alignment between research databases and clinical systems

• support strategic research

1. How can awareness of best practice in information systems development and management be best increased within the research and clinical IT communities?

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Original Aim and Objectives

• The project will create a cross-disciplinary training programme for designers and users of databases used in research and in the NHS.

• The objective is to improve the understanding of the different techniques used in clinical and research information systems and of methods that may be used to link, explore and visualise the information held within them.

• The training will cover key health-related information management and security standards as well as technical questions on database designs and information sharing procedures.

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Methods

• Pre-Course Questionnaire• Two two-day residential courses

– 60 participants from the NHS, universities and related organisations– Themes mapped to RCP work streams and NHS Knowledge and

Skills Framework• Thinking Strategically• Information Governance and Threat Assessment• Technical Architecture and Infrastructure• Data Quality, Standards and Linkage• Data Mining• Visualisation and GIS• Future eHealth Research• Quantitative Study Designs

– Web site at http://www.ychi.leeds.ac.uk/eprresearch

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Outputs

• A core set of peer-reviewed educational “modules” delivered by field experts including presentations, reading lists and mappings to key skills frameworks

• A willing social network of individuals who have gone through the programme

• A growing set of collaborators and sponsors

Image Source: http://thesituationist.wordpress.com/2008/03/03/17

Conclusions: The Future

• Strategic clinical databases, opportunity to support real-time collection of clinically relevant outcomes, assess baseline health needs to design interventions

• Potential new models of data use– Researcher access to clinical systems (use data in situ)– Transferring data sets from NHS systems to research

systems via secured network connection e.g. work of NHS-HE Forum

– Harvesting individual data items– Providing access to data on patients whose samples

stored in “bio-banks”• Shared, open access to educational materials and

promotion of re-usable learning objects18

Thank You

Any Questions?

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Yorkshire Centre for Health Informatics

Director Dr Susan Clamp

+44 (0)113 343 4960

s.clamp@leeds.ac.uk

www.ychi.leeds.ac.uk

Leeds Institute of Health Sciences Faculty of Medicine and HealthCharles Thackrah Building101 Clarendon RoadLeeds, United KingdomLS2 9LJTel. +44 (0) 113 343 4961

Yorkshire Centre for Health Informatics