National projects advancing high-value data to promote health and improve health care

Countries that are actively monitoring health care quality and health system performance provide very interesting examples of the benefits of developing evidence- based management of health care systems.

  • • Finland monitors the content, quality and cost-effectiveness of a set of selected diseases and treatments (stroke, premature new-borns, hip fracture, breast cancer, schizophrenia, heart attack, hip and knee replacement surgery, and invasive heart surgery) by linking patient data for the Finnish population across the whole cycle of care from admission to hospital, to care by their community doctor, to the medications prescribed and deaths (OECD, 2013a). From both administrative data and data extracted from electronic health records they have new indicators for each hospital to evaluate treatment quality and cost including: mortality rates, emergency room visits and readmissions to hospital, infections and complications, and stays in nursing homes and home care visits. Hospital quality is improving as the results are publicly available.
  • • Korea uses population-wide health insurance claim data to identify underuse, overuse and misuse of therapies and to reduce variation in care practices through regularly reporting quality indicators including mortality and readmission after hospital procedures; inappropriate prescribing in primary care; and outcomes following discharge from mental health hospitals (OECD, 2013a). Korea links claims data for patients across the whole pathway of care and is able to report timely results.
  • • Japan has created a new medical insurance claims database to assist the Ministry of Health, Labour and Welfare in the preparation, implementation and evaluation of a plan to optimise medical care costs. Several cost and quality studies were undertaken and published as a special issue of the Journal of the National Institute of Public Health. These studies included a linkage of insurance claim data with data on the provision of guidance to patients during periodic health check-ups regarding metabolic disease (Okamoto et al., 2013). The study found a reduction in the onset of metabolic disease and in health care expenditures among patients who received guidance about reducing disease risk during health check-ups.
  • • Sweden is breaking new ground by using data to undertake both quality and efficiency assessments of clinical care guidelines (OECD, 2013a). These guidelines inform physicians and health care professionals about the most appropriate therapies for patients with different health profiles and problems. By following patient’s cycle of care they are able to evaluate the extent to which guidelines are being followed and whether the health outcomes of patients meet expectations or not. This evidence is then used to revise the guidelines, completing an on-going cycle of improvement in care quality and efficiency.
  • • Within the United Kingdom, England has a new initiative called care.data that aims to create data about episodes of care including both health care and social care and involving pathways between primary and secondary care and information about diagnosis, laboratory tests and prescription medications (NHS, 2013). The six aims of the care.data initiative include supporting patient’s choice, advancing customer services, promoting greater transparency, improving outcomes, increasing accountability and driving economic growth by making England a centre for world- class health services research. Data will be linked for consenting patients within the whole population of England, with data extracts taking place monthly to ensure timely monitoring.
  • • England has also concentrated the collection and linkage of large national personal health databases. This includes the new Health and Social Care Information Centre as the single national repository of health data and the Clinical Practice Research Datalink which provides access to data from electronic records for primary care doctors and facilitates linkages with other data, such as clinical trial cohort data and data in the custody of the Health and Social Care Information Centre (OECD, 2013a).
  • • The United States Food and Drug Administration has implemented a sentinel project to transform how it monitors the safety of the medicines, medical devices and biologics that it regulates by tapping directly into electronic health records, administrative data and insurance claim records. Building toward a nationwide rapid-response electronic safety surveillance system, the sentinel pilot study involves 17 data partners across the United States, and encompasses the data of nearly 100 million patients (FDA, 2013).

Countries provided 27 examples of current or recently completed national projects involving the linkage of datasets or the extraction of data from electronic clinical records to follow the health care pathway and assess health care outcomes; and to understand how outcomes vary by socio-demographic characteristics, health-risk behaviours and health conditions. These projects further illustrate the potential for routinely collected data to improve our understanding of what works, for which patients, when and at what price.

1. Canada: Electronic Medical Record and Electronic Health Record Proof of Concept Project

Purpose

To demonstrate the use of electronic medical record (EMR) and electronic health record (EHR) data for research and other secondary uses by conducting three studies: sex differences in risk factors for adverse outcomes in diabetes; effects of obesity on health care services utilisation and chronic disease; and psychiatric medication adherence and its relationship with hospital re-admissions.

Organisations involved

Newfoundland and Labrador Centre for Health Information and the Canadian Centre for Health Information

Data involved

Electronic Medical Records (EMR) and Pharmacy Network data were linked to three administrative health databases (i.e., hospital, physician claims and mortality data).

Description

The project is investigating the feasibility of using data from EMR and EHR systems in the Canadian province of Newfoundland and Labrador for health research and health systems uses. The project is documenting the processes and factors associated with the use of EMR and EHR data including challenges and lessons learned. It is intended that project findings will serve as a model and facilitate future research and health system use involving EMR and EHR data, as well as contribute to the ongoing development and evolution of these systems so that their full benefits as data sources can be realised. The project has identified key factors that are important to consider when utilising EMR and EHR data for research. These have been categorised as: governance, approvals, data processing, and adoption.

To learn more

Newfoundland and Labrador Centre for Health Information (2013), E-Health Backbone, http://www.nlchi.nl.ca/newsletters/2013/february/

2. Canada: Canadian Primary Care Sentinel Surveillance Network (CPCSSN)

Purpose

Canada's first multi-disease electronic record surveillance system.

Organisations involved

The initiative is funded by the Public Health Agency of Canada under a contribution agreement with the College of Family Physicians of Canada on behalf of ten practice based research networks (PBRNs) associated with departments of Family Medicine across Canada. CPCSSN also works together with the Canadian Institute for Health Information.

Data involved

It collects and maintains national epidemiological surveillance data using Electronic Medical Records (EMRs) to improve outcomes in primary health care.

Description

The information gathered will help physicians to better understand chronic diseases and to improve the care provided to Canadians with chronic diseases and will support better management of health care systems. The Canadian Institute for Health Information is working with Canada Health Infoway and other partners to promote voluntary content standards for EMR systems in Canada that will enable the CPCSSN initiative to grow and will support health system uses of data through the CIHI Primary Health Care Voluntary Reporting System (Webster et al., 2011).

To learn more

The CPCSSN website is http://cpcssn.ca/. Project results are featured monthly in the Sentinel Eye section of the Canadian Family Physician Journal published by the College of Family Physicians of Canada, http://www.cfpc.ca/CanadianFamilyPhysician/. Recent articles have reported on how CPCSSN data are improving pharmacovigilance, which is the reporting of adverse drug reactions, and the need to develop national content standards to support analysis of data from EMR records (Keshavjee et al. 2014; Williamson et al. 2014).

3. Canada: Innovations in Data, Evidence and Applications for Persons with Neurological Conditions (ideas PNC)

Purpose

To understand the strengths, preferences and needs of persons with neurological conditions across the continuum of care.

Organisations involved

Project funded by the Public Health Agency of Canada and involving data linkages conducted by the Canadian Institute for Health Information and the Ontario Institute for Clinical and Evaluative Studies

Data involved

Data from inter RAI assessments within long-term care, home care and mental health care datasets were linked to data on in-patient hospitalisations, emergency hospital care, pharmaceutical data and primary health care data.

Description

The project aims to identify factors influencing the trajectory of change, quality of life, and health service utilization patterns across the continuum of care for patients with different neurological conditions including brain injuries and Alzheimer's disease and dementia.

To learn more

A description of the project and initial findings is available through the following link:

http://interraicanada.uwaterloo.ca/iPNC/knowledge-bank/presentations/innovations-in-

data-evidence-and-applications-for-persons-with-neurological-conditions/

4. Czech Republic: Project to Support Provision of Social Services

Purpose

Project to support the availability of social services for individuals with long-term care needs. The socio-economic and health needs of individuals in receipt of care allowances were studied in order to determine how best to organise long-term care services to meet their needs (Dankova et al., 2011).

Organisations involved

Project of the Ministry of Employment and Social Affairs.

Data involved

Data about individuals in receipt of care allowances was linked to survey and health insurance administrative records.

Description

The project evaluated the socio-economic profile, health services use and limitations in activities of daily living of the population in receipt of care allowances in order to determine how long-term care could be better organised to meet their needs.

To learn more

Study results are available in the Czech language: http://podporaprocesu.cz/wp- content/uploads/2013/01/Analyza_prijemcu.pdf

5. Denmark: Sundhedskvalitet (Health Quality)

Purpose

Produce a platform where citizens who need care in a hospital can access a set of performance indicators for individual hospitals.

Organisations involved

Project of the Statens Serum Institute.

Data involved

Hospitalisation data disaggregated by hospital unit with linkage to calculate quality indicators.

Description

Indicators are provided by hospital regarding waiting times for procedures and indicators of the quality of hospital services by disease or procedure such as lengths of stay, readmission rates and re-operation rates.

To learn more

Indicators are available in the Danish language:

http://www.esundhed.dk/sundhedskvalitet/Sider/sundhedskvalitet.aspx

6. Iceland: Patient safety - The incidence of adverse events and medical errors in Icelandic hospitals

Purpose

To investigate whether the incidence of adverse events and medical errors in hospitals in Iceland are similar to the findings of similar studies in neighbouring countries.

Organisations involved

Project of the Directorate of Health.

Data involved

Data gathering was done through retrospective reviews of 1000 case records that were randomly drawn from hospital records in 2009.

Description

The study is conducted in two hospitals in Iceland that represent around 85% of hospital activity in Iceland. The first part of the study has been completed and the results are similar to those of neighbouring countries.

7. Iceland: Non-adherence to prescribed medication in general practice

Purpose

To determine the prevalence of non-adherence to prescribed medication in general practice and to test whether it has been influenced by the moderate increase in patient co-payment that was implemented in 2010 (Linnet et al. 2013). Differences between co-payment groups were examined.

Organisations involved

Centre of Development, Primary Health Care of the Capital Area, Reykjavik, Iceland

Data involved

A population-based data linkage study. Prescriptions issued electronically by 140 physicians at 16 primary health care centres in the Reykjavik capital area were matched with those dispensed in pharmacies, the difference constituting primary nonadherence (population: 200 000; patients: 21 571; prescriptions: 22 991).

Description

The study examined prescriptions issued before and after the introduction of a moderate co-payment. Eight drug classes were selected to reflect symptom relief and degree of co-payment. Two-tailed chi-square test and odds ratios for non-adherence by patient co-payment groups were calculated. Primary non-adherence in Icelandic general practice was within the range of prior studies undertaken in other countries and was not adversely affected by the moderate increase in patient co-payment.

To learn more

http://www.ncbi.nlm.nih.gov/pubmed/22964077

8. Ireland: CaPPE - Cancer Pharmacoepidemiology & Pharmacoeconomics

Purpose

Investigation - at the population-level - of the effects of medications on cancer and assessment of the economic impact of medications and drugs in cancer. An example of results from this project is a study investigating associations between metformin exposure and colorectal cancer-specific survival using population-level data (Spillane et al., 2013).

Organisations involved

CaPPE is a collaboration between the National Cancer Registry, the Department of Pharmacology & Therapeutics, Trinity College Dublin and the National Centre for Pharmacoeconomics.

Data involved

This project uses a linked dataset consisting of cancer registrations and prescription data from Primary Care Reimbursement Scheme.

Description

The focus of the collaboration is research in the areas of cancer pharmacoepidemiology and pharmacoeconomics. Pharmacoepidemiology research involves the investigation - at the population-level - of the effects of medications on cancer. Pharmacoeconomics assesses the economic impact of medications and drugs in cancer.

To learn more

http://www.ncri.ie/research/scientific-papers/cohort-study-metformin-exposure-and-survival-

patients-stage-i-iii

9. Israel: Psychiatric hospitalisations and deaths

Purpose

To investigate the overall mortality and selected natural and external causes of death by age, sex and mental health-related variables among persons who were ever admitted to psychiatric inpatient services (Haklai et al., 2011).

Organisations involved

Ministry of Health, Israel

Data involved

The national database on causes of death was linked to the mental health hospitalisation registry.

Description

This cohort study compared the mortality risk among persons aged 18 and over who were ever hospitalised in psychiatric facilities until 2006 with never hospitalised subjects. Mortality rates were computed by age, sex and psychiatric diagnosis, while proportions of deaths were computed by time from discharge. Rates were also analysed by time periods of date of death to check for possible associations with mental health policy decisions. Age-adjusted and age-specific mortality rates and rate ratios (RR) were computed for persons with a mental health hospitalisation compared with those who were never hospitalised. The study found that the age-adjusted mortality rate of hospitalised psychiatric persons was double than that of the non-hospitalised. The rate was higher in both sexes and for persons of all age groups, particularly for the young. The highest rate ratios were found for external causes of death, in particular suicide.

To learn more

http://www.questia.com/library/1P3-2577025031/the-mortality-risk-among-persons-with-

psychiatric

10. Israel: Infant mortality

Purpose

To analyse infant mortality (Haklai et al., 2010).

Organisations involved

Ministry of Health, Israel

Data involved

The death database was linked to the live births database.

Description

Analysis of infant mortality rates, by cause, socio-demographic characteristics of the mother, and by particular types of high-risk infants, including pre-term births and infants with a low birth weight.

To learn more

This link presents the study findings in multiple languages including English: http://www.health.gov.il/PublicationsFiles/HealthIsrael2010.pdf

11. Italy: New Healthcare Information System

Purpose

To build an integrated system of homogeneous, individual health care information records, where patient information and the care delivery structure are the central information items. The goal is to make information available on the operating facilities at all health care levels, the services delivered, the resources used, and the related costs.

Organisations involved

Directorate General for Health Information and Statistical System - Department of Planning and Organization of the National Health Service, Ministry of Health

Data involved

Project involves the linkage of individual data across the spectrum of health care encounters in order to understand health care pathways, costs and outcomes.

Description

The project, on-going since 2006, is to develop a national data warehouse in which information necessary to support a strategy to balance costs and quality in the National Health Service is included. The project is to contribute significantly to public health authorities' governance capabilities by ensuring that the required analytical data on individual's health care pathways is available, including methodologies and rules to measure efficiency, appropriateness and costs overall and for different levels of government. The project is authorised by a Ministry of Health Regulation that was developed with the advice of the Italian Data Protection Authority.

To learn more

This link presents the study in Italian: http://www.nsis.salute.gov.it/

12. Italy: National Programme Outcome Evaluation (PNE)

Purpose

The programme brings together data from sub-national levels to evaluate the effectiveness and efficacy of health care services as well as providing a comparative evaluation of health care services.

Organisations involved

National Agency for Regional Health Services (AGENAS)

Data involved

Data on hospital admissions and discharges is linked to itself to determine hospital pathways and to data on deaths ascertained from the tax registry.

Description

The main objectives of the programme which was initiated in 2013 are to evaluate the efficacy of health interventions where there is a lack of clinical trial results; to evaluate the effectiveness of new treatments and technologies in real-world populations; to compare outcomes of health care services and to enable results to support accreditation, provider payments and public information; and to evaluate equity in health care availability and outcomes by comparing results for socio-demographic and regional population groups and to contribute results for accreditation and auditing.

To learn more

This link presents the study in Italian:

http://www.salute.gov. it/portale/temi/p2_6.jsp?lingua=italiano&id=2905&area=programma zioneSanitariaLea&menu=vuoto

13. Japan: Health Data Project

Purpose

The project aims to generate evidence to support extending healthy life expectancy and to reduce future medical expenditures (Kumakawa et al., 2013).

Organisations involved

Ministry of Health, Labour and Welfare in collaboration with health insurers.

Data involved

Data on health insurance claims are linked at the individual level to establish health care pathways and to data on health check-ups required by insurers.

Description

The government is working with health insurers to link and analyse data from health insurance claims and health check-ups to implement efficient and effective health services for their subscribers. The project includes developing evidence to support population approaches to health care services to maintain and enrich health; and approaches to providing services to the population at high-risk of developing noncommunicable diseases (NCDs), as well as health care approaches to improving outcomes for those diagnosed with NCDs.

To learn more

This link presents findings from this project in Japanese with summary information in English: http://www.niph.go.jp/journal/data/62-1/e62-1.html

14. Korea: HIRA Quality Assessment

Purpose

To improve health care quality by assessing the adequacy of medical services and inducing health care providers to steadily improve services found to be inadequate based on the assessment outcome.

Organisations involved

Health Insurance Review and Assessment Service (HIRA)

Data involved

Data across the spectrum of health care services are drawn from health insurance claim records and are linked to develop health care pathways and assess their outcomes. For some assessments, such as those for the treatment of AMI patients and the CABG procedure, a population selected from the medical claims data warehouse is sent to medical care institutions and information on clinical care is provided back via a web- based data collection system. For the outcome of death following health care services, hospital in-patient data are linked to computerised resident registration data from the Ministry of Security and Public Affairs. Prescription data are also linked to assess quality. For example, atypical anti-psychotics and readmissions within 30 days of hospital discharge for schizophrenia are calculated by linking mental hospital in-patient data to data on prescription medicines and hospital in-patient data.

Description

The results of the assessments are made public on HIRA's website for individual healthcare institutions so that the public can use the assessment results when choosing healthcare services. Healthcare institutions are notified of the assessment results and HIRA supports their quality improvement process through consultations. Overall assessment results are reported to the government for use in policy decisions. Assessment results for items included in a Value Incentive Program, including acute myocardial infarction and Caesarean delivery are sent to insurers in order to increase or reduce the reimbursement rate for the services provided. The number of items assessed is growing over time as is the proportion of total health expenditures that are assessed. In 2012, almost 40% of total health expenditures were included in the quality assessment.

To learn more

A comprehensive report of the methods and findings is available in English:

http://www.hira.or.kr/eng/news/01/_icsFiles/afieldfile/2013/09/11/Comprehensive_Quality

_Report_2012_eng.pdf

15. New Zealand: Health Quality and Safety Indicators

Purpose

The overarching goal for the indicators project is to develop a set of national health quality and patient safety indicators that support improvement of health services in New Zealand by comparing results within the country and comparing New Zealand to other countries.

Organisations involved

Health Quality and Safety Commission

Data involved

Hospitalisation data as well as mortality data and survey data sources are used. There is linkage within hospitalisation data to examine re-admissions.

Description

A set of health quality and safety indicators are published, as is an atlas showing variation in the quality of health care received by people in different geographical regions. There are quality and safety markers to track and incentivise progress in four critical areas of safety and quality: reducing harm from falls, hospital-acquired infections, and surgery and medication safety. Quality accounts are currently being adopted where health care providers account for the quality of their services in a similar way to financial accounts that show how an organisation used its money.

To learn more

http://www.hqsc.govt.nz/our-programmes/health-quality-evaluation/

16. Norway: Social Inequalities in Health

Purpose

Project to evaluate social inequalities in health.

Organisations involved

Norwegian Institute of Public Health

Data involved

Census data and data from the tax register on household income have been linked to the death register. A multi-generation database of the Norwegian population has been developed to enable exploration of cohort effects.

Description

The project is working to describe trends in social inequality in Norway from 1960 to the present. To date, the project includes analysis of mortality in children and adults and life expectancy. This includes a project to examine inequality in twenty different causes of death among adults and children (N®ss 0 et al. 2007). In this study, almost 800,000 Norwegians in the age group 0-20 years in 1960 and still alive in 1990 were followed for deaths from 1990 to 2001. Results identified a set of causes of death in men and in women that showed a gradient by socio-economic status. Current research includes a study of the impact of factors in early life and across generations and their interaction with later lifestyles to explain social inequalities for a number of important common diseases in adulthood. The impact of the residential history (mobility) and individual socioeconomic position throughout the life cycle on geographical variation in mortality is also being studied.

To learn more

Information on the research programme on socio-economic inequalities and health is available in English

http://www.fhi.no/eway/default.aspx?pid=240&trg=MainContent_6894&Main_6664=6894:

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  • 25,7649:1:0:0:::0:0:

17. Singapore: Retirement and Health Study

Purpose

To provide government agencies with a longitudinal database to better understand changes to Singapore's health and retirement landscape.

Organisations involved

Jointly conducted by the Central Provident Fund Board, the Housing and Development Board, the Ministry of Finance, the Ministry of Health and the Ministry of Manpower.

Data involved

A longitudinal survey of 25,000 persons aged 45 to 85 with the first wave collected between July 2014 and March 2015. The same individuals will be surveyed every two years over a ten-year period. Data are collected during the interview and, with consent, is retrieved from government databases including healthcare expenditures.

Description

The study aims to yield data and insights that enrich the policy making process by allowing interactions between employment status, wealth, health and retirement adequacy to be analysed.

To learn more

http://mycpf.cpf.gov.sg/Members/Gen-Info/RHS_2014.htm

18. Spain: Quality Indicators

Purpose

To study the quality of inpatient hospital services

Organisations involved

Ministry of Health, Social Services and Equality

Data involved

The Minimum Basic Data Set (MBDS) from the electronic record system provides over 4 million cases each year that could support national quality indicators.

Description

A set of national quality indicators is being constructed from MBDS data. A data repository and protocols for data analysis have been developed. Researchers have analysed the MBDS data to generate quality indicators for Spanish regions. For example, the MBDS of the Autonomous Region of Madrid was analysed to generate a suite of patient safety indicators following those of the US Agency for Health Care Research and Quality (Merchante et al., 2010).

19. Sweden: Open Comparisons of Quality and Efficiency in Swedish Health Care

Purpose

To compare health care quality across counties and hospitals

Organisations involved

National Board of Health and Welfare and the Swedish Association of Local Authorities and Regions

Data involved

Data are from many sources with indicators developed for quality of care outcomes resulting from data linkages.

Description

An annual report, published in November, provides a series of indicator-based comparisons of healthcare quality and efficiency among the various regions and counties in Sweden (Socialsyrelsen, 2013a). One purpose of the report is to make the publicly financed healthcare system more transparent. Another purpose is to promote healthcare management and control. The most recent report presents results for about 170 different indicators reflecting various dimensions of quality and efficiency concerning the healthcare system in general, as well as for different types of diseases.

To learn more

This link is to the indicators publication in English: http://www.socialstyrelsen.se/publikationer2013/2013-5-7

20. Sweden: National Performance Assessments

Purpose

To compare compliance to national health care guidelines across counties and hospitals.

Organisations involved

National Board of Health and Welfare

Data involved

Patient registries for each focussed condition for assessment are developed and then linked to relevant data such as mortality data and data on prescription medicines.

Description

There is one project for each national guideline for clinical care: Stroke care, Heart care, Diabetes care, Cancer care, etc. For the assessment of stroke care, for example, 44% of municipalities were found to collaborate with county councils or to have procedures in place for collaboration regarding rehabilitation of stroke patients (Socialstyrelsen, 2013b). Areas with collaboration had more favourable outcomes for patients. However, variations between municipalities are considerable and stroke patients' mortality rates and ability to manage activities in daily life have only improved marginally over the past ten years. Based on this assessment, the National Board of Health and Welfare has identified a number of areas for improvement of stroke care including reducing waiting times, increasing care provided in designated stroke units and improving rehabilitation care during and after hospitalisation.

To learn more

Example on stroke care is available in English: http://www.socialstyrelsen.se/publikationer2013/2013-3-4

21. Switzerland: Swiss National Cohort

Purpose

A multi-purpose, census based cohort and research platform permitting a better understanding of socio-economic and demographic characteristics of mortality and life expectancy (Spoerri et al., 2010).

Organisations involved

Federal Statistical Office with a consortium of university researchers.

Data involved

Data from the population census is linked to mortality data and this research platform may then be linked to other data sources for approved projects, such as cancer registries, live births, hospital stay episodes, and other clinical or population-based cohort studies.

Description

The cohort supports research to monitor and explain the evolution of socio-economic inequalities in mortality and survival outcomes in Switzerland. It is used to monitor and explain mortality differentials, while taking into acfcount individual socio-demographic, household and area-based characteristics.

To learn more

This link is to comprehensive information about the cohort and research results in English: http://www.swissnationalcohort.ch/index.php?id=2978

22. United Kingdom England: General Practice Extraction Service

Purpose

To develop national patient-level data for primary health care services in England for quality monitoring, provider payments and statistics and research.

Organisations involved

Health and Social Care Information Centre

Data involved

The service ensures that information from general practice systems in England can be accessed and used efficiently in a standardised way. Data are extracted from general practice IT clinical record systems.

Description

Data are extracted to support statistics and research including monitoring physician performance against the requirements of quality and outcomes frameworks and provision of payments to GPs and clinical commissioning groups. Data are available to the NHS and other approved organisations.

To learn more

http://www.hscic.gov.uk/gpes

23. United Kingdom England: Secondary Uses Service

Purpose

A data warehouse containing patient-level information used by NHS providers and commissioners for monitoring and research purposes (other than primary clinical care).

Organisations involved

Health and Social Care Information Centre

Data involved

Acute care hospitalisation data including in-patient data, out-patient data and emergency care data. Acute care data are also linked to national death data for indicators of survival.

Description

The data warehouse is analysed for healthcare planning, commissioning services, pay-for- results programs, improving public health and developing national policy. A range of services are provided to support data analysis, reporting and presentation including key performance indicators and data quality dashboards.

To learn more

http://www.hscic.gov.uk/sus

24. United Kingdom Scotland: Extending the understanding the impact of diabetes in Scotland

Purpose

A project to support continuing the Scottish diabetes register data linkage

Organisations involved

The Scottish Diabetes Research Network (SDRN) Epidemiology Group which receives funding from the Chief Scientist Office, Scottish Government.

Data involved

The Scottish Care Information - Diabetes Collaboration (SCI-DC) dataset forms an electronic, population-based register of over 99% of people with a diagnosis of diabetes in Scotland. It is linked to other routine databases, such as hospital admissions and deaths.

Description

The linked data supports research projects and clinical care auditing. As an example, the diabetes collaboration dataset was linked to hospital admissions and deaths to study the risk of cardiovascular disease (CVD) and total mortality among patients with type 1 diabetes (Livingstone et al. 2012). It found that the relative risks for CVD and total mortality associated with type 1 diabetes have declined relative to earlier studies, but continue to be associated with higher CVD and death rates than in the non-diabetic population.

To learn more

Information about the Scottish Diabetes Research Network is available here: http://www. sdrn.org.uk/node

25. United Kingdom Scotland: Growing Up in Scotland Survey Data Linkage

Purpose

Growing Up in Scotland is a longitudinal research study tracking the lives of thousands of children and their families from the early years, through childhood and beyond to study a range of social, educational and developmental risk factors and outcomes including physical and mental health and wellbeing.

Organisations involved

The survey is managed by ScotCen Social Research and is supported by the Scottish Government and the Medical Research Council.

Data involved

A large scale multi-cohort longitudinal survey of children living in Scotland. The survey is linked to health and education records with consent.

Description

Survey data are linked to health records and made available for research into public health issues such as infant feeding and child growth, and exposure to second hand smoke and respiratory illnesses.

To learn more

Information on the survey is available here: http://growingupinscotland.org.uk/

26. United Kingdom Wales: Flying Start Data Linkage Demonstration Project

Purpose

Flying Start is an early years intervention programme of the Welsh Government to improve the life chances of children in disadvantaged communities. This demonstration project was undertaken to establish whether the impact of the Flying Start programme could be evaluated from analysis of linked health and education administrative datasets.

Organisations involved

Welsh Government

Data involved

Flying Start areas are school catchments in deprived areas across Wales. Households in Wales were identified as belonging to the Flying Start areas, to the next most deprived areas and to other areas in the rest of Wales. Residences with children under age four in each year from 2004 to 2012 were selected for linkage to annual administrative data including hospitalisations, primary care, immunisation, educational outcomes and others.

Description

For each of the three groups of areas, variation in demographic characteristics and health and education indicators are compared and can be followed up over time. A set of indicators were estimated to support programme evaluation including those related to breastfeeding, immunisation, early hospitalisations, respiratory conditions, infectious diseases, and injuries.

To learn more

A complete description of the project, first results and limitations is available here: http://dera.ioe.ac.uk/19824/1/140131-data-linking-demonstration-project-flying-start-en.pdf

27. United States: Linked health survey and administrative data research platform

Purpose

To create a platform for research studies through the linkage of population health survey data and administrative data.

Organisations involved

National Centre for Health Statistics (NCHS)

Data involved

NCHS population health surveys are linked to death records and to medical insurance claims data from the Medicare and Medicaid programmes.

Description

Linked data files enable researchers to examine the factors that influence disability, chronic disease, health care utilization, morbidity, and mortality. The NCHS standardises and prepares population health survey records for linkage to health care and death records for approved projects. Examples of research results from analysis of the linked data include a study of the relationship between suicide and family status (Denney, 2010) and a study identifying chronic conditions in insurance claims data (Gorina et al., 2011).

To learn more

Information on the NCHS data linkage service is available here: http://www.cdc.gov/nchs/data_access/data_linkage_activities.htm

 
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