Diabetes care in the age of Informatics: Kuwait-Scotland Health Innovation Network
Dasman Diabetes Institute PO Box 1180 Dasman 15462, Kuwait +965 99107122
Aridhia Informatics Limited Hobart House, 80 Hanover Street Edinburgh EH2 1EL, UK +44 141 229 7580
In this paper, we describe the initial experience of implementing informatics support for the treatment of chronic conditions in Kuwait, including diabetes. We consider the broad requirements of service improvement and provision of clinical data. We describe work undertaken in the foundation and pilot phases of the Kuwait Scotland Health Innovation Network programme.
circulation, the peripheral nervous system, and the lower limbs, especially the feet. The IDF Diabetes Atlas body-plan (Figure 1) outlines the different complications associated with diabetes.
Categories and Subject Descriptors
J.3 LIFE AND MEDICAL SCIENCES (Health); K.6.1 Project and People Management; E.1 DATA STRUCTURES
Management, Economics, Standardization Reliability, Human Factors,
Health; Informatics; Diabetes; Service-Oriented Architecture.
The Kuwait Scotland Health Innovation Network is adopting an integrated approach to disease management. This collaboration aims to develop and support systems of high quality patient care in Kuwait . This will include the core components of patient registration, clinical guideline and standard development, patient and professional education, audit and monitoring for service improvement and patient information. All this is underpinned by a state of the art informatics solution that will allow the appropriate sharing of information across the clinical community using scalable Service-Oriented Architecture (SOA).
2. DIABETES IN KUWAIT AND IT’S ECONOMIC IMPACT
Chronic conditions have been a major burden to many healthcare systems around the globe. Diabetes ranks the highest of such conditions and has had a huge impact on the healthcare system. The International Diabetes Federation (IDF) estimated the prevalence of Diabetes Mellitus to be 6.4 per cent worldwide. The IDF’s Diabetes Atlas ranks the State of Kuwait in the 7th place with 14.6 per cent (comparative prevalence to that of the world) of its population affected with Diabetes.  Diabetes Mellitus is associated with many complications affecting different organs of the human body; it affects the eyes, kidneys, the heart and the coronary circulation, the brain and cerebral Figure 1: Diabetes and its Complications Due to such complications, the cost of care is quite high direct and indirect costs to the individual and society are considerable. The American Diabetes Association reported that in 2007 and in the United States of America alone, the cost of Diabetes care “$174 billion, including $116 billion in excess medical expenditures and $58 billion in reduced national productivity. Medical costs attributed to diabetes include $27 billion for care to directly treat diabetes, $58 billion to treat the portion of diabetes-related chronic complications that are attributed to diabetes, and $31 billion in excess general medical costs.” 
According to the World Health Organization (WHO), and the International Diabetes Federation (IDF), the level of diabetes in the State of Kuwait has reached an “epidemic level” affecting 26 per cent of the population.  Such figures are alarming to the state of Kuwait’s population and have a dire impact on the economics of the country. The cost of medical care alone will account for a large portion of the bill, but the productivity of the citizen will be lowered due to the various complications that people are affected with at younger ages with the lifestyle.
management of this change and improvement. Experience in industry shows that large organizations can achieve change but only through a conscious use of the tools of prioritization, measurement and participation. The Institute of Medicine set out priorities for a safer, more effective healthcare system in 2001 , in a model that can be extended to Kuwait. The core needs of the healthcare system should be:
3. SERVICE IMPROVEMENT IN HEALTH CARE
Tackling the rising growth of diabetes and its complications may require responses on a number of parallel tracks. It is not enough to provide medicines and a physician on demand to all. For a lot of people with Type 2 diabetes, the disease is managed through lifestyle changes and with regular medication and monitoring that does not need expensive medical consultation. Kuwait is fortunate enough to have a comprehensive health system, where care is delivered (essentially) free at the point of care, provided by the Ministry of Health . There is a standard civil identity system  that doubles as a single patient identifier and more or less systematic record keeping. Existing databases are not connected and data sharing is limited. For a wealthy country, it can be hard to see why one cannot simply provide the “best doctors” to those who need them. It is not just doctors that are needed but rather the most effective partnership between the patient, their family and a team of health care professionals including, but not relying on, specialist physicians. Analytic approaches of how to improve health care provision in chronic conditions is problematic given the systemic nature of diabetes and its complications. Diabetes and cardiovascular diseases can be seen to emerge from metabolic syndrome, which is diagnosed using at least 5 factors . As a diabetic patient, one may have to monitor and manage those 5 factors (and more, depending on complications). Changing one may affect the others, but this may be in a non-linear way. Designing the optimal healthcare response to diabetes and its complications, one might ask a number of questions, including: Who should take a blood pressure - doctor or nurse? Who should run a blood test - special lab or primary care lab? Who should decide whether a blood test should be run doctor, nurse, patient, algorithm? How often should a patient be seen - on demand, on schedule? What situations require specialist and not general practice attention: Hospital or Primary Care? What combination of drugs should diabetic patients take, and which combinations conflict? Who is at greatest risk or need of medical support?
Figure 2: IOM Principles for healthcare improvement Safe: avoiding injuries to patients from the care that is intended to help them. Effective: providing services based on scientific knowledge to all who could benefit, and refraining from providing services to those not likely to benefit. Patient-centered: providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions. Timely: reducing waits and sometimes-harmful delays for both those who receive and those who give care. Efficient: avoiding waste, including equipment, supplies, ideas, and energy. waste of
Equitable: providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status.
Service improvement is an umbrella term for the processes that push change through according to your priorities. This brings together the participation of healthcare professionals and patients in improving their own care, but also the effectiveness of a team, or a department or a hospital. The Institute of Healthcare Improvement is one organization that has taken the practice of service improvement forward asking the question “how to improve” : 1. 2. 3. 4. 5. Forming the team Setting aims Establishing measures Selecting changes Testing changes - Plan/Do/Study/Act
In responding to the rise of diabetes, we are not designing the system, we have to think in terms of change, improvement and the
This is a generic model, based on the work of Denning  and Shewhart  that can be applied in many corporate situations. Responses to chronic disease epidemics have been studied. A widely accepted study by Wagner  suggests a model for chronic disease that decentralizes the response to disease, empowering the patient and a multidisciplinary team. Principles (Wagner et al) Effective chronic illness interventions generally rely on multidisciplinary care teams Successful teams often include nurses and pharmacists with clinical and behavioral skills Such teams ensure that critical elements of care that doctors may not have the training or time to do well are competently performed These elements include population management, protocol based regulation of medication, self management support, and intensive follow up Informatics Requirements Effective data sharing
Collaborative extends the network approach and applies improvement science to other conditions.  This has resulted in sharing of experience, the development of toolkits across the sector . Outcomes are also promising. Initial research in Tayside created and validated a record linkage system for identification of all people with diabetes in a population. The system in daily use now supports the care of 20,000 people with diabetes in Tayside and 218,000 people with diabetes in Scotland and supports the National Diabetic Retinopathy Screening System which is regarded as worldleading. The system has allowed both process and outcome improvements in health to be documented. For example, 40% reduction in amputation rates  and 40% reduction in sight threatening retinopathy from 2003 to 2009  have been reported.
Faceted views of patient history Communication tools Systematic collection of key clinical variables Professional education
Service redesign standardization Risk audit Patient tools stratification
4. IMPROVING COMMUNICATION LINKS BETWEEN ELEMENTS OF THE HEALTHCARE SECTOR
To reduce the risk of Diabetes to the population while lowering the overall cost to the healthcare system, effective communication between all stakeholders and elements of the healthcare sector is needed. At present, the Kuwaiti healthcare system faces many challenges and obstacles to efficacious communication. Access to Internet and e-communication services (e.g. email, corporate intranets, online literature) is not available across the different elements of the healthcare system; rather sporadic efforts have been adopted by a few facilities. Those who do have access to such e-communication channels do operate in isolated environments. Through the Health Innovation Network that was created in partnership with MoH, the University of Dundee, National Health Service (NHS) Tayside, Aridhia Informatics and Dasman Diabetes Institute, e-communication tools will be provided and offered to the healthcare providers. Such services include access to email service, a comprehensive view of the patient’s clinical pathway aggregated from different sources, annotating documents online, and access to medical and scientific websites. These tools are nothing but a driver for service improvement and more effective and timely communication between all the stakeholders in the healthcare system.
Call Recall self-management
The participation of medical specialists in consultative and educational roles outside conventional referrals may contribute to better outcome
Online support for Managed Clinical Networks Patient education
The Health Innovation Network in Kuwait is a partnership between the Dasman Institute, University of Dundee and Aridhia Informatics, aiming to improve healthcare provision in Kuwait, starting with diabetes care. In Scotland, the National Health Service has been proactive in developing and applying the ideas of service improvement – including the Scottish Patient Safety Alliance , Quality Improvement Scotland . For diabetes, the Diabetes Managed Clinical Network (MCN) at NHS Tayside has developed over a number of years to coordinate the provision of diabetes care across the region, reducing variation in care, and boundaries between elements of the healthcare sector in the region. This network model and systematic use of information technology has led to a sustained improvement in diabetes outcomes.  Within the broader national context, the Long Term Conditions
5. DATA INTEGRATION APPROACHES
Patients may assume that heavy investment in information technologies already provide a unified view of their medical history. Levels of awareness and IT literacy vary, and most people don’t recognize the organizational and technical barriers to achieving that result. In a health system that doesn't have a vision or policy for integrated pathways of care, organizational silos can add further barriers, with no agreed protocol for sharing data between clinical groups, for example between general and specialist practitioners. In strict technical terms, there are few real barriers to producing that unified view. In other fields, huge volumes of data at personal level, both transactional and descriptive data, are processed as
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routine. For example Facebook regularly processes 700 billion minutes of online activity a month for 500 million users, of whom 50% log in daily  so volume is a challenge, but not a technical barrier. Industries with complex supply chains regularly orchestrate multiple transactions into a single manifest of whet constitutes the end product. For a tightly regulated and safety critical product such as a modern airliner must implement tools to track information relating to all aspects of assembly. At the time of writing, Boeing “exchanges 40Gb of data a month with 600 suppliers worldwide” . So, technically, system integration across corporate boundaries is not a technical issue. Although the complexity of patient data is comparable to other industries, it is probably true to say that healthcare data is modeled by a higher number of autonomous overlapping expert groups. Specialists in one field have their own consensus of particular facets of the record, and there are often tensions between administrative, insurance and clinical requirements. This normally results in separate systems designed to meet the individual needs of the different functions within the health system and the corporate culture can't reduce the autonomy of the groups and impose a unified system, even if one existed. Arguably a health system could be run from a well-configured and run combination of Enterprise Resource Planning (ERP) and Customer Relationship Management (CRM) systems. It is unusual to hear of a health system described as an enterprise with a customer relationship focus. Yet even if such an implementation were in place, legacy records would need to be consolidated. Although patients may expect representatives from the same health system to know their case, there are tensions, and privacy is often cited as a barrier to providing a unified view. There are at least two aspects to this. Banks manage personal information for individuals and compartmentalize access to information. Access control tools exist to make sure that, given a standard rule; a member of staff should only see data for "their" customers. In healthcare, these standard rules are often missing. Physically, a patient will see whoever is on duty. Likewise, in IT, the principle is that a system restricts access to identifiable clinical information to clinicians who have a legitimate direct clinical relationship with the patient. The other dimension of privacy is wariness about providing aggregate detailed reports. In commerce, reporting structures will demand detailed reporting on all aspects of the business, with a view to improving the business. Internal politics aside, a strategy of quality improvement can work in healthcare, with aggregate information for improvement not judgment. Conscious use of anonymization may improve the level of detail that can connect aggregate data to particular case studies. Financial pressures on the health system might enforce this requirement sooner rather than later. Designing a data integration strategy inevitably involves a compromise among these competing trends and factors. Two specific models emerge. 1. Runtime aggregation The first approach rejects centralization of data and takes the approach of real time orchestration of existing systems (usually using web services) to generate a one-time view of the patient’s history, usually at the time of actual patient contact. There's a
clear transactional context for access to data, and the data are the best available data at the time.
Figure 3: Runtime aggregation In this form of runtime aggregation, web service endpoints must be added to existing healthcare systems, and at the time of display, the unified patient view is constructed through parallel or sequential queries to the systems. In practice, however some patient data may in fact be held centrally, to resolve identity through lookup and mapping tables, for example. This approach does not allow aggregate reporting, so service improvement is not directly supported. In health systems that are transactional such as the US, involving multiple corporate elements, the runtime aggregation approach works best, as it clarifies the interfaces between multiple parties and reduces the need to share data not required for the specific transaction or billing needs. 2. Continuous integration The other approach synchronizes data from multiple systems into a single repository. In practice this database might be distributed (or sharded) for scalability or it might be federated but conceptually, all data are resolved into a single namespace for retrieval and analysis. Data can be linked at organizational as well as patient level, providing a very rich platform for quality improvement and research. In this approach, multiple Extract Transform and Load (ETL) can be used to optimize the loading and synchronization of data. Typically connectivity is through networked database connection using Open Database Connectivity (ODBC) protocols. Seeding of data may require an initial bulk load that differs from the continuous polling for changed data at planned intervals. Specific interfaces to the data can be exposed by the 3 rd party system provided in the form of database views or table level queries can be made.
Figure 4: Continuous Integration
Once data is maintained in the shared repository, it can support both the unified patient view and aggregate reporting for service improvement. The approach is more resilient to 3rd party system outage at the time of query since there should always be some historical data to present. (3rd party system outage can take the form of transaction fail in aggregating the record, or more likely, lengthy timeouts) In this approach, data are only as good as the last refresh, so techniques need to be evolved to bring that into a "soft real" timeframe. Greater responsibility is placed on information governance tools, however there is plenty of best practice to adopt from other fields. This is the approach developed by Aridhia Informatics  in Scotland with a reference implementation at NHS Tayside providing continuous information delivered for multiple purposes. Kuwait’s unified health system, like Scotland’s, does not have the transactional features of the US system, and although multiple elements exist within the system, central oversight allows a system of trust to be built that enables the continuous integration to be built. Both approaches need to deal with data quality problems such as provenance, frame of reference, versioning and echoes across multiple systems. In the Kuwait Scotland Health Innovation Network, the Aridhia data integration methodology was adopted and adapted to local circumstances. 1. 2. A data hub was deployed at Dasman Institute where all data processing happens Data sharing agreements were established with Ministry of Health and other data providers. A distinction is made between data owners (a clinician, say) and data providers (an IT provider, for example). Clinical consensus was built up to the purpose and detail of what data would be displayed in the unified view - the so-called "currency of care". Operational links were made with data providers on
behalf of the data owners and a schedule of mirroring their data was established. 5. Audit logs are maintained of all integration activity and data access.
Once data is mirrored (in part or packets) it can be normalized (reducing formatting and encoding issues) and linked to existing data (e.g. to link to the relevant patient or the clinic). It is then stored into a common data model, known as the Healthcare Domain Model. Aridhia uses a relational database server as infrastructure but the layers of versioning and provenance provided mean that the data are better understood as semi-structured and potentially semantically tagged. In broad terms, data items are usually part of an entity record (a person, place or facility) or part of an event stream (a transaction, a measure, a contact, appointment). These two categories of data support many useful applications for the unified view or analysis. Linking may add third category of data that is the “patient journey” expressed as a graph data structure. Events are the nodes enriched by attributes of those events (including related entities) as node properties. The edges of the graph may represent time between events or other relationships. The Aridhia system typically maintains a derived data set consisting of all the patient journeys for all patients as graphs. This is updated as new records are synchronized. Error! Reference source not found. illustrates the data structure for an example pathway. A patient has an emergency admission; that leads to specialist and general appointments with data from other events, such as medication, integrated from multiple systems. Selected portions of the domain model are delivered to applications through a data service layer that implements generic aspects of functionality such as security, logging and caching to web and other clients. Data services can implement other more complex functionality as required, using an extensible plug-in architecture.
Figure 5: Patient events - a pathway as graph data
6. INFRASTRUCTURE ISSUES
Since the late 1990s, the Ministry of Health (MoH) at the State of Kuwait has undertaken the initiative of introducing Electronic Medical Records (EMR) to the primary care level of the Kuwaiti Healthcare system. Spread across 80+ Primary Care Centers distributed all over the country, Primary Care Information System (PCIS) replaced the physician’s handwritten notes in the traditional paper-based medical records and provided a “single EMR for every patient” according to the Department of Information Technology at MoH in it’s strategic document. While PCIS can be viewed as a success story for MoH, it faces many challenges with regards to intermittent connectivity and the “true centralization” of the EMR. MoH relies on the networking infrastructure, which in turn is operated by the local Internet Service Providers (ISPs). The majority of the links connecting MoH Headquarters to the Primary Healthcare Centers (PHCs) are Digital Subscriber Line (DSL). Many of the PHCs complain of the network service outage occurring at least two or three times per week. Where this may be a flaw in the network design, application architecture, or even the physical connectivity, the Ministry of Communication has ambitious plans of upgrading the entire country’s network infrastructure to fiber which will hopefully be more reliable and offer much more bandwidth than the current infrastructure setup.  Network infrastructure isn’t the only barrier to connectivity of the different elements of the Kuwaiti Healthcare system; many fragmented operational health information systems exist and work as islands isolated from each other. Each of the five general hospitals in Kuwait has a Hospital Information System (HIS) and each is at a varying stage of operations and adoption to the clinical work-flow within. None of these HIS systems communicate with each other, nor with PCIS. It gets more complicated inside each hospital as other information systems like the Radiology Information System (RIS) and its associated PACS, and Laboratory Information System (LIS) are not connected to HIS. One hospital however stands as a model of such integration, but only within the boundaries of the general hospital only. Connecting the dots and integrating systems is not a trivial process as it may appear. Many of the healthcare providers at MoH have been very keen on adopting electronic data recording and replacing the traditional paper-based medical records. Unfortunately though due to lack of IT resources, programmers, and healthcare informaticians, these healthcare providers have been challenged with creating their own stand-alone solutions based on available top-of-the-shelve solutions. In almost all instances these “programs” or “systems” are not backed up appropriately nor is their code-base updated properly through a change management process. This may be a practical solution in the short-run, it definitely has created many islands of information repositories; this task makes it a challenge to properly and routinely integrates these data-sources together.
A foundation phase in summer 2010 established the communication links and principles for data integration with the partners. Data integration delivers secure online access to the unified patient view, which is cross-referenced to online access to clinical standards, guidelines and glossaries. Clinical consensus on shared data views is being developed through the use of online review and annotation tools. Plans for 2011, include the integration of professional education services (delivered by the University of Dundee) through the use of virtual learning environments. The pilot programme running through to March 2011 involves a number of primary care clinics and the Amiri hospital in the Capital Region. A unified patient view is in pilot at the time of writing, and work is underway to apply the improved information available to identify service improvements. A key output of the pilot phase is a model for diabetes care supported
We would like to thank our colleagues among the management and staff at all the partner sites for their continued participation and input the programme, and who commented on earlier drafts of this paper. Shiekha Alibraheem Primary Care Clinic Abdulrahman Alabdulmoghnee Primary Care Clinic Hamad Alsaleh Alhumaithee and Shieka Mohammed Alsudairawee Primary Care Clinic Bader Alnafeesi Primary Care Clinic Al-Amiri Hospital Dasman Diabetes Institute University of Dundee (Scotland) National Health Service Tayside (Scotland) Aridhia Informatics
Our thanks to ACM SIGCHI for allowing us to modify templates they had developed.
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7. PROGRESS AND OUTPUTS OF THE PILOT PROCESS
As a practical long-run solution to such challenges, the Dasman Diabetes Institute collaborated in a joint initiative with the Ministry of Health, The University of Dundee, Aridhia Informatics, and the National Health Service (NHS) - Tayside, to develop a flexible, scalable, and agile web-based infrastructure.
 Crossing the Quality Chasm: A new health system for the 21st century, Committee on Quality of Health Care in America, Institute of Medicine
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