Biomedical informatics transforming the care of people with chronic diseases internationally
Submitting InstitutionUniversity of Dundee
Unit of AssessmentClinical Medicine
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
A health informatics platform supporting chronic disease management
nationally and internationally creating impact upon:
NHS: Implementation in all 1043 general practices, 38
hospitals, and 14 Health Boards in Scotland, continuously monitoring
care of 271,000 people with diabetes, with evidence of improved clinical
Government Policy: Embedded in Government policy: Scottish
Diabetes Framework, Scottish Diabetes Action Plan; highlighted as "best
practice" in the 2009 House of Lords Report Genomic Medicine and
UK Life Sciences Strategy 2012.
Commercialisation: A start up informatics company, now with 82
employees and deployments internationally.
Internationalisation: Implementation of the informatics network
through the Kuwait-Scotland eHealth innovation network.
Diabetes is a global health problem. In December 1996 the United Nations
declared diabetes to be a chronic, debilitating and costly disease
associated with severe complications, which poses severe risks for the
world. The number of people living with diabetes is estimated to be 500
million by 2030.
The underpinning research (1996-1998; Chief Scientist Office, Scottish
Government-funded) was carried out at the University of Dundee and led by
Professor Andrew Morris (Senior Lecturer in Medicine 1996-2000)
with Professor Tom McDonald, Director of the Medicines Monitoring
Unit who had pioneered record linkage for drug safety. The Diabetes Audit
and Research in Tayside, Scotland (DARTS) study tested the hypothesis that
record linkage of routinely collected NHS data sources was an efficient
and accurate methodology to create a regional diabetes register. The
initial study linked information from the community health index (health
identity number), hospital clinics, pharmacies, laboratories, and the
retinal screening service. The 1997 BMJ publication [i] reported
on the sensitivity and specificity of this methodology for diabetes
ascertainment and described the prevalence and morbidity of 7,500 people
in Tayside Scotland (population 400,000). This initial success was
followed by further underpinning research funding (Scottish Government
1999-2001) to demonstrate the scalability of the solution to another
Health Board, initially NHS Forth Valley (population 350,000) in 2000.
This developed and validated the informatics platform for the abstraction,
normalisation, integration and provisioning of clinical data. It created a
region wide clinical information system that provided value to frontline
multi disciplinary clinical teams across two Health Boards in Scotland.
From 2002, the Scottish Government adopted the health-informatics
platform and implemented it across Scotland. It now supports care of
271,000 people with diabetes nationally and represents the most
comprehensive clinical information system for the care of people with
From an academic perspective, the Dundee team not only built on the
platform with >150 publications on classical epidemiology studies
(Wellcome Trust/MRC funded [e.g. ii, iii]) but also anticipated the great
value of combining routinely collected phenotypic data from electronic
patient records with consented biologic materials, including DNA. This
additional underpinning research was funded by local charities (£100K
Tenovus Tayside; 1999 2002), and gained momentum with funding from the
Wellcome Trust Functional Genomics Programme (£790K; 2003-2007) to create
the UK Case Control Collection for Type 2 Diabetes. This recruited over
20,000 subjects for genetic studies of diabetes, its complications and
pharmacogenetics [e.g. iv]. This resource is the cornerstone of large
international research collaborations including the Innovative Medicines
Initiative and Wellcome Trust Case Control Consortium 2. The roll out to
the whole of Scotland has allowed the study of the epidemiology,
pharmacovigilance and outcomes research on a national basis, funded by the
Wellcome Trust, MRC, ESRC as part of the £3.7M Scottish Health Informatics
Programme (2008 2012) [e.g. v], and the recent 2012 award by MRC and nine
other funders of a eHealth Informatics Research Centre; Dundee has been
invited to lead the £39M UK network of-eHealth Centres, The Farr
Institute for Health Informatics Research, based upon this
References to the research
i. Morris AD, Boyle DIR, MacAlpine R, Emslie Smith A, Jung RT,
Newton RW, McDonald TM (1997) The Diabetes Audit and Research in
Tayside Scotland (DARTS) Study: electronic record linkage to create a
diabetes register. DARTS/MEMO Collaboration. Brit. Med. J. 315,
524 8 DOI: 10.1136/bmj.315.7107.524).
ii. Schofield CS Yu N, Jain AS, Leese GP (2009) Decreasing Amputation
rates in patients with diabetes — a population based study. Diabetic
Med. 26, 773 7 ( DOI: 10.1111/j.1464-5491.2009.02770.x).
iii. Vallace JH, Wilson, PJ, Leese GP, McAlpine R, MacEwen, CJ, Ellis JD
(2008) Diabetic retinopathy: more patients, less laser. Diabetes Care
31, 1126 31 (DOI: 10.2337/dc07-1498).
iv. Zeggini E,
Wellcome Trust Case Control Consortium (WTCCC),
(2007) Replication of genome-wide association signals in UK
samples reveals risk loci for type 2 diabetes. Science 316,
1336 41 (DOI:10.1126/science.1142364).
v. Colhoun HM and SDRN Epidemiology Group (2009) Use of insulin glargine
and cancer incidence in Scotland: a study from the Scottish Diabetes
Research Network Epidemiology Group. Diabetologia 52, 1755
The research underpinning this case study has been funded by substantial
research grants from a variety of peer-reviewed sources.
• Morris AD, Jung RT, McDonald TM: Does record linkage of
drug consumption facilitate complete diabetes registration?; Scottish Home
and Health Department (1996 1998) £105,752.
• Morris AD, Siann T, Jung RT, Newton RW, McDonald TM,
Matthews D, Reith S: Innovative IT to implement the St Vincent Declaration
and SIGN guidelines in Scotland; Scottish Office (1999 2001) £214,020.
• Morris AD¸ Davey PG, MacEwen CJ, Florey C du V: The
epidemiology of diabetic eye disease: a population based study; Wellcome
Trust (1998 2001) £177,104.
• Morris AD, Hattersley A, McCarthy M, Palmer C, Leese GP: The UK
Type 2 Diabetes Genetics consortium Case Control Collection: a resource
for the genetic epidemiology of Type 2 diabetes; Wellcome Trust Functional
Genomics Grant-(2004 2006) £822,900.
• Multiple large International Grants including: Innovative Medicines
Initiative (2010 2014, SUMMIT (complications of diabetes); €32M; joint PI
Professor H Colhoun, University of — Dundee leading on two work packages;
2012-2016 DIRECT Diabetes Research On Patient Stratification; €43M
Professor Ewan Pearson Dundee, PI), Wellcome Trust Case Control Consortium
2; (Pharmacogenetics Exemplar; Professor C Palmer, PI).
Details of the impact
Government Policy Impact
Following publication of the underpinning research, Scottish Government
endorsed the need for nationwide clinical information systems to support
diabetes care through the Scottish Diabetes Group in the Scottish Diabetes
Framework (2002) and the Scottish Diabetes Action Plans (2006 and 2010
). The Government commissioned further informatics research at the
University of Dundee to develop DARTS into a national technology product,
the Scottish Care Information-Diabetes Collaboration (SCI DC; http://www.sci-diabetes.scot.nhs.uk/)
[2,3]. NHS Scotland Quality retinopathy screening . E-very NHS Board in
Scotland was instructed to deploy SCI DC. TheImprovement Scotland also
endorsed its implementation for national clinical standards and Government
has funded SCI DC as a joint venture between the University of Dundee and
NHS — Tayside (~£750K per annum during the assessment period), and it is
now the national clinical information system for the care of all people
with diabetes in Scotland. SCI DC uses state of the art informatics to
combine information from heterogeneous data sources, including the
national community health index, general practices, hospitals,
laboratories and the national retinopathy screening service. Since 2004
SCI DC has been implemented in all 14 Scottish Health Boards, and since
2008 it has been used in 1038 general practices and 38 hospitals,
monitoring the care of over 271,000 people with diabetes. Since 2008 the
SCI-DC has supported the nationwide retinopathy screening programme (http://www.ndrs.scot.nhs.uk/),
arguably the most complete, quality assured screening programme
internationally, performing digital retinal photography on 200,000 people
with diabetes annually. SCI-DC also produces the Scottish Diabetes Survey
 which has recorded year-on-year improvements in the quality of
diabetes care, delivers national diabetes patient-led information and
education packages (e.g. http://www.mydiabetesmyway.scot.nhs.uk/)
and is embedded within national quality standards. In December 2008 SCI-DC
commissioned an independent review of its products with a view to
consolidating into a single system (SCI-DC Phase III) for diabetic care
across Scotland, as well as moving to the latest relevant technologies,
and in April 2013 the SCI-DC Team successfully completed the migration of
Health Boards from SCI-DC Network to the single SCI-DC Phase III product
now known as SCI-Diabetes .
Other impacts include:
Improved patient care and health outcomes: SCI-DC supports the
evaluation of improved regional and national health outcomes, e.g. a 40%
reduction in amputation rates [ii] and a 40% reduction in
sight-threatening retinopathy 2003-2009 [iii], and has evolved into a
powerful nationwide pharmacovigilance tool, allowing safety assessment
of diabetes treatments and other therapies [v].
Strategic Research Impact: SCI-DC is the core of the Scottish
Diabetes Research Network (http://www.sdrn.org.uk/;
Dundee led), that attracts research income (~£500K p.a.) from the Chief
Scientist's Office to improve clinical trial performance (300% increase
2008-2013). The associated recruitment of individuals to large genomic
studies (>40,000 subjects) [7,8], and the linkage of phenotype to
genotype, has been of great importance [iv]. Dundee is now a major
partner of several international research endeavours including the
Wellcome Trust Case Control Consortium 2, the €43M DIRECT study on
stratification of diabetes (led from Dundee) and the €32M SUMMIT study
on biomarkers for diabetes complications (co-led by Dundee). Dundee
leads the Scottish node of the £39M MRC co-ordinated Farr Institute and
convenes the UK Health Informatics Research Network. In terms of
research policy, this case study has been highlighted as best practice
in the UK Life Sciences Strategy 2012, the UKTI "Business
Olympics" at Lancaster House July 2012, and The House of Lords
Report on Genomic Medicine (2009) . The linkage between
research, informatics and health care led Sir Mark Walport, Director of
the Wellcome Trust to write (The Times 30th May, 2011); "If you
live in Dundee and suffer from diabetes, you have recently been taking
part in a medical revolution."
Creation of a new business: In 2008 Aridhia Informatics (http://www.aridhia.com)
was co- founded by the University with the aim of creating an
international health informatics company based in Scotland. Aridhia is
now a small-medium enterprise, based in Dundee and Edinburgh, which
employs 82 people. It has attracted >£10M of external investment,
including a £1.2M Technology Strategy Board Cancer Informatics programme
in Scotland, and venture funding from Scottish Equity Partners and
Albion Ventures. Aridhia has cloud-based deployments in Scotland,
England, Kuwait, New Zealand and Australia .
International Impact: We have rolled out the informatics model
internationally to the Kuwait-Scotland eHealth innovation network (www.dasmaninstitute.org/kuwait-scotland).
The thesis is that we can export the Scottish Health Science "package"
of informatics, research and quality care delivery to other nations
wrestling with the challenge of non-communicable diseases. Following the
signing of a Memorandum of Understanding in 2010 between the Ministry of
Health in Kuwait, the Dasman Diabetes Institute , the University of
Dundee, NHS Tayside and Aridhia Informatics, the partners have:
- installed an electronic health record to the Capital Region of
Kuwait City (600,000) with nationwide roll-out anticipated in 2013;
- enrolled 170 Kuwaiti students on a University of Dundee Masters
Course in Diabetes Care, Research and Education;
- developed the Kuwait clinical skills centre, the first of its kind
in the Middle East;
- established collaborative research programmes in genetics,
epidemiology and health services research;
- secured multi-million pound income to Scotland (>£15M);
- been shortlisted for the Times Higher Education Supplement
International Collaboration of the year 2012.
Sources to corroborate the impact
Evidence of impact into everyday clinical care across Scotland,
and commercialisation can be confirmed from the following websites
and individual contacts:
- The Scottish Government, Edinburgh (2010) Diabetes Action Plan 2010:
Quality Care for Diabetes in Scotland. ISBN: 978-0-7559-9379-6;
available at: http://www.diabetesinscotland.org.uk/Publications/DAP2010.pdf.
- Corroboration of statements regarding the roll-out of the SCI-DC
across Scotland may be obtained from the former Lead Clinician for
Diabetes in Scotland.
- Corroboration is also available from the Chair of the SCI DC Steering
- NHS Quality Improvement Scotland (2008) National Overview Follow-up
Report ~ March 2008: Diabetes. ISBN 1-84404-499-8; available at: http://www.healthcareimprovementscotland.org/previous_resources/performance_review/diabetes_follow-up_no.aspx.
- NHS Scotland Scottish Diabetes Survey Monitoring Group (2009) Scottish
Diabetes Survey 2008: http://www.diabetesinscotland.org.uk/Publications/Scottish%20Diabetes%20Survey%202008.pdf
- House of Lords Science and Technology Committee; 2nd Report of Session
2008-09 Genomic Medicine Volume I: Report. Available at: http://www.publications.parliament.uk/pa/ld200809/ldselect/ldsctech/107/107i.pdf
- Further corroboration may be obtained from the Chair of the Office of
Strategic Co-ordination of Health Research (OSCHR).
- Corroboration may be obtained from the Chief Executive Officer of
- Corroboration may be obtained from the Director, Dasman Diabetes