MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

Report

Authors

Vinay Venkatraman Priya Mani August Ussing

August 2015 About this report

This report is prepared by Leapcraft Aps on request by Copenhagen Healthtech Cluster, Copenhagen Capacity in May 2015.

The premise of research has mainly been intensive desk research done over 8 weeks and a combination of Leapcraft’s experiences on working with big data solutions for the Danish market. We have tried to ensure that the list of medical databases referred to and listed in this report are still active and that the list itself is exhaustive. However it is not a comprehensive or complete list by any means.

Wherever possible and relevant, statements about institutions and organisations have been borrowed from their own website to ensure the correct interpretation of their role and activities.

DISCLAIMER : All material presented in the report is meant to be indicative and to inform Copenhagen Healthtech Cluster’s research needs. This report is not for public use or research purpose. MAPPING THE THE HEALTHCARE HEALTHCARE DATA DATA LANDSCAPE LANDSCAPE IN INDENMARK DENMARK CONTENTSCONTENTS 3 Pg. 04 1. Introduction 05 1.1 Background 05 1.2 Identity as a National Infrastructure

06 2. The Landscape of Danish healthcare 2.1 The State 2.1.1 Danish Regions 2.1.2 Municipalities 08 2.2 Data Infrastructure 2.3 Data Administrators 2.3.1 Documentation- General Practitioners (GP) 10 2.3.2 Who generates what type of data? 2.3.3 Types of documentation 2.3.4 Registration Practices 14 2.3.5 Double Registrations and Inconsistencies 15 2.3.6 The role of Medcom 2.4 The Data Documentation Initiative 2.4.1 Platforms, Integration and connectivity 16 2.5 Data for citizen access 2.5.1 Sundhed.dk 2.5.2 e-Journal

17 3. Sources of information 3.1 National registries 19 3.1.1 Clinical databases 20 3.1.2 Cohort Studies 22 3.1.3 Genome Data in Denmark 3.1.4 Biobanks 23 3.1.5 A note on Economic and Social Data

4. Accessing the health data 4.1 Legislation 24 4.2 The Danish Data Protection Agency : Datatilsynet 4.3 The Danish Data Archive: Dansk Data Arkiv 4.4 Danish Research Ethical Council: Den Nationale Videnskabsetiske Komité 4.5 The Danish Council of Ethics Etiskråd 4.6 Challenges in intersectoral research

25 5. Society as a Cohort 28 5.1 Demographic focus : Women, Children, Elderly & Veterans

30 6. Mapping the Databases

32 7. Contextual extrapolation of Healthcare Data

36 8. Conclusion

38 9. The Next Steps Appendix List of National Registers : Data quality, period of collection and contact. List of Clinical Databases : Data quality, period of collection and contact. List of Cohort Studies : Data quality, period of collection and contact. List of Centers of Genome Research : Data quality, period of collection and contact. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

1.Introduction

This report aims to understand the known sources of data mining. The challenges to accessing information healthcare data in Denmark and see how this data is stored in specific registers at both intra- and inter connected and can be corelated to each other and other sectoral levels has been outlined. social data to make it meaningful to more stakeholders in the healthcare sector, the healthcare industry of Chapter 5 looks at possibilities to synthesise the diagnostics, medical devices, private healthcare and various data sources and make new sense from it. After insurance and ofcourse, to citizens themselves. The mapping existing efforts, the report looks at potential report also outlines the legislative and ethical guidelines new lenses to see the same data like demography, around usage of healthdata in Denmark through general wellbeing and chronic illnesses. An attempt has scenarios of use to highlight challenges in information been made to see the entire landscape of data sources exchange at intra- and inter-sectoral levels. mapped on a lifetime. As we see this historical data collection activity as a mass of data on specific factors, Beginning with a comprehensive layout of the Danish it reveals evolution of lifestyle syndromes, focus of social welfare system which is the primary link between the healthcare sector and policy making, gender based the citizen and state and thus a robust database, the tendencies etc. Analysis can take take a predictive turn report in chapter 2 introduces all the public sector as the map can be interpreted across many indicators. players who collect, collate and use health data. Points of contact and interaction in the system that generate Using the body as a spatial metaphor in chapter 6, the this data have been discussed in detail along with various registers are mapped giving one an overview of possibilities for citizen access to both personal and areas of keen research interest, funding and of value public data. A short overview of the procedures around to population studies. All kinds of registers are notably retrieval and use of data for research access as well mapped here, stressing the volume of data that exist for as commercial use (including research for commercial a particular area of study. pursuits) is presented. While the registrations are intensive and often exhaustive, the formats themselves A detailed contextual extrapolation of data use is are not aligned and hence this chapter delves deeper explained in chapter 7 citing potential use case scenarios into the issues of data integration and discusses in and the way forward to realise these mentioning the further detail the registration practices, even at the different stakeholders and a possible road map. most basic patient - doctor level, that essentially generates this data. This analysis helps outline the The report concludes with a road map for use of this barriers and challenges in the healthdata landscape as healthcare data combined with other rich socio- it is now, and can help in improving the framework for economic data collected in Denmark for welfare projects future databases. and private sector projects.

Chapter 3 discusses in further detail the various categories under which this healthcare data is collected describing the periods of time and population breadth covered in these, thus reflecting on the quality of the available data. The various registers are classified in detail here covering clinical data registers, quality indicator registers and tissues and bio materials sample databases.

Privacy around personal data is given great importance in Denmark, giving great credibility to health data generated here. Chapter 4 lists the various agencies that work towards keeping this system secure in good detail giving one an overview of the legal framework for potential cross sectoral research projects and further 5

1.1 Background 1.2 Identity as a National Infrastructure

The Nordic countries have been front runners in the Using a unique personal identification number assigned collection of data on births, deaths, disease and to all persons with a permanent residence in Denmark its control. Data on education and employment, (CPR-number)5, it is possible to link data from one or immigration and emigration have also been duly more registers or from other sources with register- collected as it was and is the backbone of the welfare based information at an individual level6. It was state model. Growing population, tax collection and established in 1968 and contains the name, address, disbursement of complex welfare funds pushed the personal identification number, date and place of birth, state’s early foray into digitisation of data. Thus very citizenship and other information about the country’s high quality data of the whole society is available for citizens and residents. varying, yet long periods of time. Additionally, each Danish firm has a unique identification For example, information on causes of death has been number, the CVR Number 7, which makes the link between collected since 1875 in Denmark1, information on a firm and employees possible8. Thus, the access to compulsory schooling and continuing education are information on important exposures, confounders available for cohorts born after 19452, information on such as education, income, and ethnicity and various twins are available for cohorts born after 18703, and health-related outcomes offers immense opportunities cancer incidence has been registered for the whole for doing epidemiological research on, for example, the country since 19434. association between occupational exposures, disease incidence, mortality, social issues, clinical indicators, and rehabilitation.

Additionally, all data pertaining to real estate properties in Denmark are maintained in the BBR9 which includes detailed historical data on property evaluation, condition, renovation, ownership and pollution levels of constructions. This indepth recording reflects socio-economic data that can be related to population transition , lifestyle and well being.

1 Helweg-Larsen K. The Danish Register of Causes of Death. Scand J Public Health 2011;39(Suppl7):26–9. 2 Jensen V, Rasmussen A. Danish education registers. Scand J Public Health 2011;39(Suppl 7):91–4 3 Skytthe A, Christensen K, Kyvik K, Holm N. The Danish Twin Registry. Scand J Public Health 2011;39(Suppl 7):75–8. 4 Gjerstorff M. The Danish Cancer Registry. Scand J Public Health 2011;39(Suppl 7):42–5. 5 CPR- Det Centrale Personregister https://cpr.dk/ 6 Pedersen CB. The Danish Civil Registration System. Scand J Public Health 2011;39(Suppl 7):22–5. 7 CVR- Det Centrale Virksomhedesregister http://datacvr.virk. dk/data/ 8 Petersson F, Baadsgaard M, Thygesen LC. Danish registers on personal labour market affiliation. Scand J Public Health 2011;39(Suppl 7):95–8. 9 BBR - Bygnings og Boligregisteret - The Building and Housing Register. www.bbr.dk. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

2. The Landscape of Danish recorded in the BBR are nationwide registers pertaining Healthcare to all citizens and residents of Denmark and established protocols means the extrapolation of all this data with a single identification number is possible, but not The layout of the Danish healthcare system and the explicitly done today. The data is informative and forms Danish political system forms an important basis for the the basis of nearly all register based researches in the work on eHealth in Denmark. Health care in Denmark is country. The data is gathered and accessible nation wide based on two main principles: and a large part of this (except the CPR number itself) is available for research and commercial use and further, Free and equal access to public health care. This the anonymisation of data, partly or wholly is possible. includes general and specialised practitioner services Aggregated data and statistics from these registers is and services at all public hospitals. Dentists and out- of-hospital medicines and some therapies are provided made public. under private or co-payment models on a case basis. 2.1.1 Danish Regions Universal coverage. All residents in Denmark are entitled to public health care benefits in kind. The Danish Regions coordinates the common interests of the 5 regions at the national level and negotiate the The public health care system is organised in two main annual financial framework for the regions with the sectors: primary health care and the hospital sector. The government as well as enter into agreements with the primary health care sector deals with general health private practising sector including GPs and dentists.10 problems and care and consists primarily of general Public hospitals and contracts with all GPs are the practitioners, practising specialists, practising dentists, undertaking of Danish Regions (Danske Regioner)11. The physiotherapists and home nursing. Primary health care data collected is currently from the primary healthcare also includes preventive health schemes, public health and the hospital sector which use different platforms care and dental care for children. and registration protocols. Yet, the data collected is almost entirely digitised thus generating an intense, deep The hospital sector deals with medical conditions that pool of e- health records pertaining to every individual’s require specialised treatment, equipment and intensive healthcare history. While the data can be transferred care. A general practitioner (GP) must refer the patient across systems, the format is still text documents. The to a hospital for examination and treatment unless it Regional eHealth Organisation (Regionernes Sundheds- is a question of an accident or acute illness. Usually IT organisation – RSI, est. 2010)12 accelerates and it is necessary to be referred by a GP for treatment by coordinates the implementation of eHealth across a specialist. Since 1993, patients have had the right the five regions. All projects, collection of data and to choose between all public somatic hospitals for maintenance of databases are carried out with one of treatment. An extended free choice, since 2002, has the regions as the main principal. given patients the right to choose a state financed treatment at a private hospital if waiting times at the 2.1.2 Municipalities public hospitals are too long. The regions are divided into 98 municipalities The administrative break up of the between: (Kommuner) and are responsible for a wide range of 1. The State health services like local and specialised dental care 2. Danish Regions (Danske Regioner) and rehabilitation preventive treatment, homecare, 3. Municipalities (Kommune) nursing homes, rehabilitation (not hospital), treatment of alcohol and drug abuse, social psychiatry and The Sundhedsdatastyrelsen, part of the Sundheds- og physiotherapy.13 Thus the municipalities collect data on Ældreministeriet is the agency for the National Sundhed various socio-economic indicators giving deep insights IT (NSI) that until August 2015 was part of the Statens into every individual where therapy and chronic care at Serum Institute. the municipality level can thus be linked to various other municipality activities such as education, work place 2.1 The State conditions, tax collection, welfare schemes. The CPR and CVR registers along with property data 7

Illustration 1: The Landscape of Danish Health Care - Infrastructure & Access

The nation wide infrastructure is continuously recording personal data at the state (geo-bio data), region (e-health records) and municipality levels (e-care records). The data, specifically, healthcare data is recorded in national registers, tissues and samples are collected in bio banks and data of specific health conditions is actively recorded in clinical databases, by active participation and inactively by course of treatment in hospitals.

Access to the data is made available both for personal use (one’s own data) and is systematically anonymised at various resolutions for research purposes. This infrastructural landscape is well integrated ensuring every instance of interaction between the state and the resident is documented both qualitatively and quantitatively.

ECR Hospitals EPR Electronic chronic Lab, Imaging Electronic Care Record sytems Patient Record care BBR Building & Housing Municipal Register Regional State / Intra Infrastructure Infrastructure Governmental National Shared Infrastructure E Medical Records, with National IT, education,housing, employment Architecture, Standards, records CPR & CVR Secure Data INFRASTRUCTURE Civil Registration Central Virksomhed System Register

National ClinicalClinical Registers & DatabasesDatabases Services Biobanks Research DOCUMENTATION Registeries, tissue samples, databases Secure Data

Denmarks Danskerne Statistics Sundhed

ESundhed Healthcare ACCESS Professional Research Doctors Citizen Commercial Aggregated / Inter register Research Open Data

Sundhed.dk

Citizen Doctors Personal health records, hospital journals, reports Secure Data INTERACTION

5 regions 10 http://www.medcom.dk/dwn5350 11 www.regioner.dk 12 http://www.regioner.dk/sundhed/sundheds-it/rsi 96 Municipalities 3500 GPs 13 http://www.ikas.dk/IKAS/English/The-Danish-healthcare- system.aspx MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

2.2 Data Infrastructure 2.3. Data Administrators

All the health databases are administered by a data The Regions’ Clinical Quality Development Programme manager who works within the Regions Competence (Regionernes kliniske Kvalitetsudvikling Program, Center. Data entry for some databases is directly done RKKP)20 represents infrastructure supported nation into the nationwide register, while some others are wide clinical databases, Danish multidisciplinary maintained in regional registers which in turn plug into Cancer Groups (DMCG) and centers of epidemiology, the nation wide register. There is double documentation biostatistics, health informatics and clinical quality. of some variables in this case. The program’s primary objective is to ensure continued improved utilisation of the nationwide clinical Competence centers have been established in all the 5 databases It was formed in Sept. 2010 and has since regions and they oversee the IT requirements of each focused on ensuring the framework for prioritisation database, identify relevant clinical content, workflows, and management of databases; better use of existing IT advice and offer data analysis validated by statistical data / reduction of data entry tasks; standardisation epidemiological principles. There are 3 competence of inputs and outputs in relation to databases; product centers for register based Epidemiology Studies while development and proper method development. The the other 2 are focussed on data quality and indicators. RKKP is located in Århus. The five regions have their own competence centers for clinical epidemiology and they Kompetencecentre for Epidemiologi & Biostatistik work together with the Joint Secretariat (the RKKP). (KCEB) KCEB-Nord – Located in Aarhus/Aalborg14 KCEB-Syd –Located in Odense Universitetshospital15 2.3.1 Documentation- General KCEB-Øst – Located in Glostrup as a part of the Practitioners (GP) Forskningscenter for Forebyggelse og Sundhed (Research center for Prevention and health)16 In Denmark around 98% of the population (health insurance group 1) are assigned to a specific general Kompetencecentre for Klinisk Kvalitet & practitioner through a list system. The GP acts as a Sundhedsinformatik (KCKS) gate-keeper with regard to referrals to specialists and KCKS-Vest – Located in i Århus, along with RKKP17 hospitals, and services are free of charge. The remaining KCKS-Øst – located in København Ø, as part of IT, 2% of the population (health insurance group 2) have Medico og Telefoni, Region Hovedstaden chosen the right to consult any GP or practising specialist at any time, in return for paying a substantial part of the The Danish Healthcare Quality Programme ( Den Danske doctor’s fee.21 Services to both groups are registered in Kvalitetsmodel, DDKM)18 is a national accreditation the National Health Service Register (NHSR). system for quality development across the entire healthcare sector along with methods to measure The data in the register is generated through the and control this quality. The programme serves as a GP’s invoices to the Regional Health Administration. method to produce continuous and persistent quality All practices are computerised and they send an development across the entire healthcare sector. The electronic fee request containing information about DDKM aims to generate and combine data which is the citizens, the provider, and the type of service to already being collected in the Danish healthcare sector.

This data includes, among other things, the national 14 http://www.kea.au.dk/klinisk%20kvalitet/kompetencecenter- quality databases, data on adverse events, national nord/kompetencecenter.html 15 patient satisfaction surveys. DDKM is public and http://www.ouh.dk/wm220632 16 https://www.regionh.dk/kliniskedatabaser/Sider/default.aspx multisectorial. 17 www.kcks-vest.dk 18 http://www.ikas.dk/DDKM.aspx 19 The Danish Institute for Quality and Accreditation www.ikas.dk 20 http://www.rkkp.dk/om-rkkp/ in Healthcare (Institut for Kvalitet og Akkreditering i 21 John Sahl Andersen, Niels De Fine Olivarius, and Allan Krasnik. Sundhedsvæsenet) IKAS19 develops, plans and manages The Danish National Health Service Register. Scand J Public Health July 2011 39: 34-37, doi:10.1177/1403494810394718 the DDKM. 9

Illustration 2: The Danish Healthcare Landscape: What data is collected? Who has health data? Who can access it?

Examples of databases

CLINICAL State / Intra Governmental

Biological data & samples related EMR

Pato Bank Dansk transfusionsdatabase PKU Registret National BioBank Citizen Research Cause of Death Register ADHD databasen Dansk Føtalmedicinsk Database Organdonationsdatabasen etc.

TREATMENTS Citizen

Research Specific Procedures/ Conditions related EMR

Dansk almenmedicinsk database IVF Register Rehabilitation Register National Patient Register Cancer register Akut Kirurgi Databasen access Blærecance TREATMENTS Dansk Anæstesi Databaser Dansk apopleksiregister CLINICAL Dansk børnecancer register Dansk Brystkræft Database etc.

NON-CLINICAL NON-CLINICAL

Information connecting to CPR Citizen Research

Donorregistret Livstestamentregister Autorisationsregisteret Fællesmedicinkort DEMOGRAPHIC venteinfo.dk Administration af udleveringstilladelser Mobilt Akut System Databasen (MAS) Ventetid på danske apoteker

www.regioner.dk Data from all hospitals

DEMOGRAPHIC Doctors Research Person related data

CPR (Det centrale personregister) Fødselsregisteret Dødsårsagsregisteret

*Also includes other reflecting databases like eductaion, Here, it can be seen that the state itself is actively involved in cross sectoral employment, welfare benefits etc. data analysis that it presents through various platforms both at the individual level (Statens Institut for Folkesundhed) and nation wide level (Danmarks Statistics). The data collected and managed by various agencies reflects their focus and in turn the various kinds of research projects the data feeds into. The data owners work under larger universities (for domain knowledge), as AGENCIES national infrastructure (regions, municipalities) and independently (Statens Doctors Serum Institute, National Biobank). Data is accessible at various resolutions depending on the need for access ( fundamental research, industry assisited research, self health monitoring, nation-wide health and wellness trend monitoring etc.) PLATFORM However it appears, that a holistic overview of all of a person’s personal data is perhaps visible only to the State through the CPR number. While the linking all the various data silos is technically possible, there are no platforms that ACCESS offer this linked socio-economic-health view to the individual.

At a higher demographic level, population data will need to be parsed quite Citizen Doctors Research Commercial State / Intra extensively to collect similar parameters for comparitive studies across Governmental specific population studies. The nature of data, both raw and collated that is readily available for commercial research remains however unclear. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

the Regional Health Administration every week which 2.3.2 Who generates what type of data? passes the information on to the National Board of Health (Sundhedsstyrelsen). The list of variables is Every point of contact with the health care system comprehensive.22 generates information and data about a patient. This can be both quantitative and qualitative and registers The GPs occupy a central position in the Danish health are maintained to that. Some of this data is of primary care system as the patients’ primary point of entry to nature ( raw data) and the rest is secondary data that is health services. The GP ensures that the patient is given derived from the registers or reflecting registers. the right to treatment and right treatment and is referred to the right professionals in the health service. The GP is In the Danish context, most of the healthcare is managed thus the coordinator and the person with professional by the public healthcare system, and yet a small fraction responsibility for referring patients to hospitals, is supplemented by the private healthcare who are specialists and other healthcare professionals. still obliged to maintain the personal heath records of the patient during the period of treatment at a private center. Examples of data generated are provided in the table below. For further reading refer Sec.3 on Pg 13 Table 1 : Who generates what type of data?

Raw data generated at every touch point contributes to the bigger data pool. Here are some examples of qualitative and quantitative fields that are populated through the data gathering process. Secondary data is generated by numerous sources that service the larger healthcare industry. The list here is only indicative.

EXAMPLES OF EXAMPLES OF PRIMARY DATA QUALITATIVE CONTENT QUANTITATIVE CONTENT RESPONSIBILITY

General Practice records Observations Vital statistics GPs symptoms test results diagnosis Frequency of visits medical history Total time per case prescriptions requisition of tests Pharmacy records Prescription Waiting time Pharmacies, Hospitals Compliance Frequency of order Drug Interactions Population health Allergies

Electronic Care Records Summary of point of care Use of resources - Patient Satisfaction personnel, time, Record of Incomplete care infrastructure etc. Treatments Tests if any

Electronic Health Records diagnoses, treatment, imaging, Pathology, lab results, Hospitals outcomes, Treatments Tests if any

Health Insurance records treatment, outcomes Private or Public health insurance

Biological samples - Bio banks, Hospitals

EXAMPLES OF EXAMPLES OF SECONDARY DATA QUALITATIVE CONTENT QUANTITATIVE CONTENT RESPONSIBILITY

Health registers Costs, resources Individual register owners

Patient communites (e.g Diabetes, Cancer, psoraisis, alcohol rehab etc.

22 John Sahl Andersen, Niels De Fine Olivarius, and Allan Krasnik. The Danish National Health Service Register, Scand J Public Health July 2011 39: 34-37, doi:10.1177/1403494810394718 11

2.3.3Types of Documentation 2.3.4 Registration Practices

All data generated and collected can be broadly Typically, entering data to the central registers is handled classified under the following types. While some of by secretaries who report the interaction between them are qualitative, some others are quantitative and the doctor and the patient. The reporting of data from the format can be both text (.xml) and numerical values. hospitals to the central records is ongoing in the patient administration systems (PAS) systems.

Patient behaviour For further reading refer Sec.4.7 on Pg 24. Health issue, compliance with treatment, outcomes, personal choices or preferences The decision on who is responsible for registering the quality databases is taken at the branch level. This Health outcomes means that it varies from department to department, Medical records, hospital statistics, insurance data, on whether the registrations are made by​​ a clinician, a observational indicators nurse or a secretary. However, in most cases, doctors or nurses in charge of the case inputs to quality Longitudinal Patient records databases.23 Pathology, drug and product information, social and environmental factors, medical history consisting The input of data to the central registers typically of diagnosis codes, doctor’s notes, lab reports and happens as follows: diagnostic images - wounds, xrays etc.) 1) The doctor collects information as part of a conversation with the patient, or an operative procedure Resource Use and writes notes, fills out forms or dictates notes to the Each contact with the health care system (time waited, secretaries. spent and quality), treatments, costs etc. 2) The information is thus transferred to the secretaries who in turn input the information in the patient Population Health administrative system and edit or debug the entries. All clinical data generated under controlled randomised trials, other structured content like lab tests, images or Input of data to the clinical quality databases are unstructured content like notes, medical history etc. 1) The doctor inputs the information - but rarely as the collection of information happens (i.e not during a Montoring devices patient visit or procedure) At home monitoring devices, personal devices, apps 2) The nurse inputs the data that quantify the body or physiological data generated 3) The doctor fills out a form which is then input by the from bed side monitors at hosiptals and other sensors. secretary. The most common is of course the first two options and Sales & Marketing a conservative estimate is that 2/3rd of all information Data from pharmacies, sales, marketing and product input happens this way.24 data, insurance claims etc. Recording practices in clinical quality databases can be Other reflecting data generally categorised into three main groups. Environmental data like weather, pollution, atmospheric 1) The recording is directly done into the other central allergents, diease outbreaks etc. registers (LPR, pathology register, etc.) and thus there are no independent records in the database. 2) The recording reports directly to their own database. The same information is reported in varying degrees to both the central registers and database causing double registrations. 3) Combination of shared recording with central, and separate reports. 23 http://www.sum.dk/Aktuelt/Publikationer/Analyse-af- kvalitetsoplysninger-i-Danmark-juni-2010/Kapitel%204.aspx Continued on Pg. 14 24 ibid. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

Illustration.3 Platforms, Flow of Messages and Quality of Data between the various stakeholders.

All messages between the different stakholders and sectors (primary & secondary) are marked in this flow chart of electronic messages.

The administrators (municipality) and online interfaces (sundhed.dk) are also marked here as a source of generating and receiving messages. PRACTITIONERS 3500 in 60 96 Kommunes 245 250 726 550 in The digitalisation strategy in the 2100 clinics hospitals in 5 Regions 250 public sector of Denmark has intended to reduce person based interactions clinics (enquiry, reporting etc.) and paper work (intimations, collection, imposing PLATFORMS 16 15 1112 3510 9115 of fines etc.) to a bare minimum by creating a single online interface for this. Here, one sees only the health sector, but a similar messaging GP Hospital sundhed,dk protocol exists in other public sectors as well. elemedicine

The nature of the messages are T both qualitative (text, like surveys, stakeholders etc. journals, notifications, reports) and quantitative (numerical, like pathology reports, biological profiles etc.). Numerous databases on quality of healthcare are maintained reflecting Online booking of Communication to Call for participation Communication & appointments. the citizen. in surveys, change of resource utilisation, costs and patient Citizen Information from all satisfaction. Online consultations doctor etc. Danish healthcare In-person visit. Change of address services. Prescription renewal. This flow chart is loosely based on a representation of flow of electronic messages in the health sector in the Request for Access & update Requisitions Requisitions Prescriptions Referrals Referrals Referrals Referrals Report “IT brings Danish Health sector Transfer of patient Referral Bookings Prescription Renewal. journal together” Pg.6, published on the public GP records portal sundhed.dk. Lab Reports Lab Reports Discharge letter Discharge letter Discharge letter Discharge letter

Information from medcom.dk, IKAS and quality indicators of databases has been added to this to include every Transfer of patient Requisitions X Ray Referrals Prescriptions data point in the system, reflecting Booking report. Discharge letters records whether they are clinical, non clinical, Hospital Lab Reports Lab Reports and if the data reflects a economic value or not.

The stakeholders often use multile platforms which cause some Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and discrepancies in data formats and Public Health Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement sharing and this number is indicated on the chart as well. Insurance

In 2014, EPIC, an American solutions provider has been chosen to overcome the many challenges posed by non Lab Reports synchronous platforms and data formats. In the years to come, EPIC Sundhed.dk is expected to create unanimity between the messgaing systems and architecture, reducing lag and irrelevance. Data type Clinical Non clinical economic non economic 13

PRACTITIONERS 3500 in 60 96 Kommunes 245 250 726 550 in 2100 clinics hospitals in 5 Regions 250 clinics PLATFORMS 16 15 1112 3510 9115

GP Hospital sundhed,dk elemedicine T stakeholders ETC.etc.

Online booking of Communication to Call for participation Communication & appointments. the citizen. in surveys, change of Information from all Citizen Online consultations doctor etc. Danish healthcare In-person visit. Change of address services. Prescription renewal.

Transfer of patient Referral Bookings Request for Access & update Requisitions Requisitions Prescriptions Referrals Referrals Referrals Referrals records Prescription Renewal. journal GP Lab Reports Lab Reports Discharge letter Discharge letter Discharge letter Discharge letter

Booking report. Transfer of patient Requisitions X Ray Referrals Prescriptions Discharge letters records Hospital Lab Reports Lab Reports

Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Billing and Public Health Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Reimbursement Insurance

Lab Reports Sundhed.dk

Data type Clinical Non clinical economic non economic MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

The registration and any duplicate entries in the a clinical quality database. clinical databases depends on how each database is constructed. Since there are no overarching guidelines Over the spring of 2010, the Sundhedsstyrelsen mapped for building databases input fields, the area is and analysed double registrations across the system. characterised by different solutions. Also, irrespective 32 nationwide clinical databases, equivalent to 90 per of the database, typically the same variables especially cent. of all registered patients in quality databases were from the LPR is what is double registered. These are mapped. The focus was the extent to which health staff about basic demographic information, administrative use unnecessary time on record in quality databases, healthcare information and clinical information about diagnoses, procedures, examinations and medical Documentation and exchange of data in the Danish history. Healthcare Data Landscape is clearly seen in the illustration hereunder. 2.3.5 Double Registrations & Illus 4. Det danske Sundhedsvæsenen Inconsistencies XMLformat Although the data is computerised, much of the data is Primary Health Care text based Secondary Health Care Messaging manually entered and the nature of the administrative Practitioners Hospitals Pharmacies System distribution causes the same data to be entered a Home Care Nursing Homes multiple times. When this happens across different Visiting nurse platforms used in the practice, it results in different All Rehab work formats of documentation, minor variations caused by human entry and thus it can be challenging to achieve a unified longitudinal data set without setting aside preparatory time for parsing the data.

Part of the problem of inconsistency stems from because the database variables are also reported to Denmark’s own digitalisation history. An early foray into a central repository. The variable was categorised digitising health records while providing long periods of as a double registration only if all outcomes for the data, often comes with data recorded across platforms given variable is registered in a central register. The that do not integrate very well or possibly support the survey shows that annually, ​​almost 30 million. double same fields of data entry. Technically speaking, since registrations were made between clinical databases Denmark was a frontrunner in digitalisation of its and central health records. Between clinical databases medical records, the data pool is inundated by a huge and LPR / CPR alone, there were 25 million. double challenge of legacy systems and outdated platforms. registrations annually, equivalent to about 85 per cent. Within the GPs alone, 16 different platforms are in of the total number of double registrations. About use. The hospitals use 15 different platforms which 75% of annual double registration takes place in five are not the same as the ones used by GPs. Transfer of of the clinical databases. Double registrations could be patient data is mainly textual (.xml) based between the avoided by increasing integration with data from the systems except for when numerical data is used, for e.g. central health records. 25 pathology reports.

The Center for Register-based Research lists some Another instance is the restructuring of the interesting challenges in the existing Danish healthcare municipalities in 2007 when 276 municipalities were data. reduced to just 98, resulting in codes that don’t match. Different collection periods, changed or altered variables Examples of inconsistencies include, all mean that there could be issues of inconsistent 1) The Danish Civil Registration System (CPR) contains longitudinal datasets.

A double registration in this context can be defined 25 http://www.sum.dk/Aktuelt/Publikationer/Analyse-af- kvalitetsoplysninger-i-Danmark-juni-2010/Kapitel%204.aspx as data with mandatory inputs into the LPR or other central registers but is also simulatnoeusly collected in 15

information on permanent residence including municipalities, pharmacies and private laboratories. emigrations, immigrations and disappearances. This Messaging systems between the primary and secondary is recorded in 9 different data sources with (although healthcare sector are crucial and currently Medcom minor) missing and inconsistent information, where oversees the approval of platforms and formats for this persons may be registered to reside at a specific address service. 26 in Denmark while also being registered as living abroad. 2.4 The Data Documentation Initiative 2) The municipal reform in 2007 reduced the number of municipalities from 276 to 96 causing a difference in The Data Documentation Initiative (DDI) is an codes assigned to these municipalities. 27 international cooperation for setting metadata 3) The National Patient Register (NPR) contains an documentation standards for describing data from administrative database containing patient-level the social, behavioral, and economic sciences. Data information, a database describing diagnoses given is unanimously expressed in .Xml and the DDI has at somatic in- and outpatient departments, and a specification on how metadata must be stored. procedures performed at somatic in- and outpatients It now supports the entire research data life cycle. departments. This information is contained in one DDI metadata accompanies and enables data database per year, so far yielding 35 administrative conceptualization, collection, processing, distribution, databases, 35 diagnostic databases, and 35+ databases discovery, analysis, repurposing, and archiving.29 on procedures performed. In addition, there are some changes in what types of information are included, as 2.4.1 Platforms, Integration and well as inconsistencies due to varying variable lengths connectivity- The Danish case between years. 28

While the registers and databases have an impressive Ref, Illustration. 4 Platforms, Flow of Messages and record of quality of treatments, outcomes of care and Quality of Data between the various stakeholders. on improvement initiatives and numerous guidelines at Pg. 12. local, regional and national levels written over a long period of time, a rather obvious problem of integrating all 2.3.6 The role of Medcom these initiatives has surfaced. About 3500 practitioners across 2100 clinics in 98 municipalities use 16 different MedCom is a public, non profit organisation that platforms to make a data entry of Primary health care. facilitates cooperation between healthcare While mostly they accept and send the same data fields, stakeholders. It contributes to the development, there are differences which eventually affects the testing, deployment and quality assurance of electronic completeness of the data. communication and information in the health sector. It is jointly financed by the Ministry of Health, Danish The case is similar with the hospitals. 60 public hospitals Regions and Local Government Association. use 15 different platforms to record and exchange data.

Medcom sets the digitisation standards across The chance to leapfrog into a futuristic data repository the industry, providing authorisation and approvals seems a bit challenging - both from a technological for platforms and data exchange formats used by aspect and behavioural resistance from the large professionals across the healthcare sector. administrative work force.

Medcom ensures relevance and a strong IT infrastructure needed for secure and coherent access to healthcare data across the regions, municipalities and all practitioners. They set the standards for software platforms used by the practitioners to ensure that a comparable depth of data is collected nation wide. 26 CIRRAU Advantages . www.cirrau.au.dk Working in alignment with the national strategy for 27 ibid. 28 ibid. healthcare digitalisation, Medcom has come to cover 29 http://www.ddialliance.org/what telemedicine infrastructure, public health insurance, MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

2.5 Data for citizen access

Anyone with a CPR number can access their health data. of the Danish population. Clinicians at hospitals have The portal sundhed.dk, gives access to journals and access to e-Journalen directly through the hospital’s entries made at every contact point with a healthcare eHR system, while GPs can access the system through professional. This gives the individual a good amount of sundhed.dk. Furthermore, patients can also gain access personal data for basic understanding. To get overviews to their own data via sundhed.dk. on societal health data and statistics, aggregated data is also made available for citizen use. To understand 2.6 Data for research access a particular health condition, citizens can access the portal esundhed.dk, which gives access to aggregated All large institutions concerned in the collection of data from specific, nation wide registers with a data provide an interface to apply for access to data. possibility to select variables for viewing. Danmarks Researchers are requested to furnish details of their Statistics offers a rich repository of annually published, study for access. This procedure also applies to aggregated and analysed data. Danskernessundhed30 other socio-economic data sources which opens up publishes its findings from nationwide surveys to possibilities for intersectoral research. Some databases offer a big picture view of the nations state of heath are more parsed and better tagged than others and healthcare. The Interaktiondatabase31 describes depending on how the data was gathered. drug interactions and citizens are given the possibility to check this online. Sundhed.dk also offers a huge As a case, consider the National Biobank that has a repository of common illnesses and treatment, therapy repository of over 16 million biological samples. The and medication options for them. samples accessed by robots can be retrieved based on multiple variables - For example, it is possible to retrieve 2.5.1 Sundhed.dk blood spots from diabetics of Danish origin, between a particular age and income window, having had a case of Sundhed.dk is an online portal that was established a broken arm, and with three children. in 2003 to provide a common digital entry to reliable information about an individual’s health and the 2.7 Data for commercial access Danish health system and at the same time create an opportunity to provide health care professionals with Commercial entities can apply for use of personal data access to improved ways of communicating digitally across sectors. Their permission of use and application between each other and with patients. The partners is governed by the Danish Research Ethical Council which behind sundhed.dk are Danish Regions, the Ministry of is the approval body for all register based research. Health and municipalities through Local Government Denmark (LGDK).32 As a citizen, one can log in with their CPR number and access their health records generated at the GP, reports from the hospitals and any associated pathological tests or any other contact points with other healthcare professionals. While most records are real time, pathological reports are still deferred by a few weeks.

2.5.2 e-Journal

The e-Journalen (“e-record”) system gives patients and healthcare professionals digital access to information on diagnoses, treatments and notes from eHR systems in all public hospitals. 30–40 per cent of the hospitals also provide access to information on medicine and 30 www.danskernessundhed.dk sample results from laboratories. By the end of 2011, the 21 http://www.interaktionsdatabasen.dk 32 system contained health data on more than 85 per cent www.kl.dk 17

3.Sources of information Health surveys could be regional or national and contain data specifically collected for research purposes Mainly, three types of data are used by public and private pertaining to behaviour, diets and lifestyle, quality and entities to steer or design healthcare products, services experience of healthcare etc. and for policy making : 1. Health survey data, Clinical trials data is registries of controlled and 2. Information about general consumption patterns randomised studies conducted by hospitals, research 3. Administrative data generated by the healthcare centers and private companies. delivery system. Non clinical data includes psychological, behavioral and Data based on clinical care come from electronic health sociodemographic factors in addition to information records, clinic-based administrative datasets, and about a patient's relationships, neighborhoods and government reimbursement datasets. Large-scale communities. registries are generated and maintained by the Regions, state health authorities, professional societies, Healthcare data collected through the system reflect pharmaceutical and device companies, and the economic data - data that indicate infrastructural government. Clinical trials, whether publicly or privately expenditures, medicine, treatment or therapy costs. funded, can function as rich sources of observational data, useful for exploring questions that go beyond their Information on the nationwide registers and clinical original hypothesis. Common features of all these types quality databases we found, are distributed across of data include an electronic format, predefined fields, multiple sources, not one giving a detailed overview and for most, large numbers that enable robust analysis. of the landscape. While the National Board of Health (Sundhedsstyrelsen) lists a majority of the national Data collected through these various registers, clinical databases, details of administrators, quality indicators studies, pathology tests etc, can be broadly classified and data variables, period of data collection and access as clinical and nonclinical data. is distributed across many websites. Hereunder is a list of sources of information we have used to compile the Clinical data usually refers to a real time database that list of national health registers and clinical databases. can be a data collective as any of the under: Refer to Table 2 for list of websites with information on ehealth records Electronic health records - This is the most basic, yet vital data collected at the point of interaction between 3.1 National registries the healthcare provider and the citizen. It includes demographic information, diagnoses, treatments, From 1 March 2012, all data on the state of public health prescriptions and medicines, pathology tests, and data concerning health service activity, economics hospitalisation, insurance, cost reimbursements etc. and quality has been consolidated at, and analysed by, Statens Serum Institut (SSI). The data is utilised for Administrative data provides statistics and national and local authority tasks and made available information on hospital inpatient and emergency for research and analysis purposes in the field of health. department utilisation. The registries comprise data on the nation’s health, Health insurance data includes data on all touch points morbidity and mortality, together with data on that provide a service reimbursable by the public health healthcare sector organisation and economics. The insurance and details of subsidies provided on certain national registries publish statistics on a regular basis, treatment offers. and offer access to data extraction. In addition, extracts from the registries are provided for activities such as Disease registries contain data within a very specific analysis, research and planning. range of fields relevant to the disease type. These would include registries for diabetes, cancer, heart disease, Examples of National registries include, the Register asthma etc. for causes of death which has information on death and relating causes based on death certificates issued from 1875, or the National Patient Register MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

Table 2 : Health agencies with information on clinical databases.

INSTITUTION INFORMATION ON DATABASE

Statens Serum Institute www.ssi.dk

e-Sundhed eSundhed.dk

National Biobank Explains the biobanks in Denmark and how data from various registers can be combined. www.biobankdenmark.dk Gives researchers online access to combined data from all the biobanks participating in the Danish National Biobank initiative.

Datal Protection Agency All legal requirements required to start, maintain and access registers and databases Datatilsynet pertaining to personal data and how they may be processed.

Kompetencecenter for Klinisk Kvalitet og Biostatistik, Nord www.kea.au.dk

Kompetencecenter for Klinisk Kvalitet & List of nation wide clinical databases with format of the database explained along with Sundhedsinformatik purpose, indicators, data collection, annual reports, organisational contacts, current status Competence Center for National Clinical and funding. Databases, East Region H Some regional databases within the Capital Region are also listed. Region Hovedstaden www.regionh.dk

Competence Center for National Clinical Very brief information on only national databases that are populated and maintained by the Databases, South center with details of those incharge and relevant weblinks. Center for Clinical Epidemiology Center for Kliniske Epidemiologi Odense Univery Hospital www.ouh.dk

Center for Register-based Research A rich repository of all nationwide registers (non-health included). Very brief information on Center for Register Forskning each, but contains contact details and organisational structure of the database. nccr.au.dk

Regionernes Kliniske Links to clinical databses, annual reports, their own websites (in case of important ones like Kvalitetsudviklingsprogram (RKKP) diabetes or cancer) www.rkkp.dk

Center for Integrated Register-based Excellent overview on application & approval procedures for inter-register research, Research especially useful for interdisciplinary predictive analysis. 19

(NPR) which collects information on diagnoses and 3.1.1 Clinical databases operations performed in hospitals since 1977, or the National Health Service Register (NHSR) which since A clinical quality database is a registry containing 1990, collects information from primary health care selected measurable indicators which, based on contractors about quality of treatment and services, individual disease courses, serves to shed light on or the Pathology Register which from 1997 holds data either parts of or the overall performance standards on all pathological studies conducted by the country’s within the health service and outcomes for a limited pathology departments etc. category of patients. These databases are all restricted to a diagnostic group, a medical speciality or procedure. This means that separate databases are maintained for patients with conditions such as COPD, breast cancer, cardiac insufficiency etc.

Illustration 5: Clinical Databases - Construct & Workflow

This depicts the administrative construct of clinical databases in Denmark. Each stakeholder contributes to the data quality both by intrinsic domain knowledge, and computation infrastructure. The representation of Danish Regions in the maintainence of a database ensures nationwide outreach for data collection. The establishment of the database itself is overseen by Datatilsynet where anyone wishing to setup a database applies for permissions and further clearance from the the Danish Research Ethical Council. Formats for setting up the database are established by the Datatilsynet.

Regions

Steering Comittee

RKKP

Oversees resource & experience utilisation between competence centers and ensures consistent workload.

Regional Clinical Database Competence Center

Professional support to ensure coverage, professional consensus on indicators and necessary acceptance of Database performance MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

The data are used for monitoring the quality of members of the family, parents income, residence etc. treatment in order to assess any underperformance which have broader implications if considered for future and potentials for improving quality of care. There are socio-welfare frameworks and governmental policies. currently approximately 60 national clinical quality databases, which in combination cover approximately Another such study is the Diet, Cancer and Health cohort 60 categories of medical conditions. which in its very nature is broad, recording lifestyle and its effect on overall onset, treatment and therapy of Examples of clinical quality databases could be the cancer. Such studies could generate data points that Colorectal Cancer Database which contains diagnostic, are relevant to other sectors such as the agriculture and treatment and follow up on all colorectal cancer patients food industry, manufacturing industry at large or feed from 2001, or the Hysterectomy Database that since into fundamental genome research. 2004 contains diagnostic, treatment and follow up information on all women who undergo hysterectomy, The data will further reflect on the economy of persons the Cytogenetic Register which since 1968 contains and their families and thus data is very valuable in the information on persons who have undergone prenatal welfare model as every instance of welfare payout ( chromosomal diagnostic procedures. unemployment, rehabilitation, support etc.) is only adding burden to the system. The clinical databases are organised under a public authority (for e.g, the Regions) for reasons of While these are very large scale cohorts, smaller administrative ownership and data security and based cohorts can be very valuable too. The Gerda Frentz within a scientific institution to ensure professional Cohort for example is not just another cancer register. support, consensus on indicators and peer acceptance. The true incidence of non melanoma cancers is a very The databases are attached to one of three Centers for vital information in the nordic populations due to their Competence for epidemiology and Biostatistics who predisposition to skin cancers co-affected by their provide IT and workflow advice and bring expertise on environment (sun and UV radiation), diet and subsequent data analysis. absorption of food and importantly lifestyle factors like sun based activities which prolongs exposure and risk. 3.1.2 Cohort Studies

Over the last 50 years numerous cohort studies have been conducted providing ample opportunity for researchers to revisit contextual data with new research probes.

Cohort studies are often established with a specific focus (for e.g. to study the establishment, development or progress of a particular condition). Yet in a context like Denmark, where personal data has been meticulously documented and digitised for decades, cohorts assume a new dimension. The same data can be reassembled and also combined with other socio-economic data pertaining to the same person to derive new findings.

An example of a broad spectrum cohort is the Danish National Birth Cohort where children are followed continuously through their childhood (pre-teenage year) via qualitative questionnaires and quantitative recordings of vital statistics at regular intervals.

This data can be understood with data on their sensorial and lanuguage development at kindergartens, education records at primary school, data on other 21

Here are some of the largest cohorts conducted in Denmark:

The Danish National Cohort Study (DANCOS) is a nationally representative public health survey based on linkage of information in the repeated Danish Health Interview surveys, 1986–2005

Diet, Cancer and Health is a Danish prospective cohort study aimed at investigating the associations between dietary habits, lifestyle, and cancer development. The participants were recruited during 1993—1997.

The Danish National Birth Cohort (DNBC)33 aims to study the period from conception to early childhood and examine how this period influences health conditions at later stages in life. Determinants for reproductive failures, identifying pre- and perinatal determinants for important health problems in childhood and improving the infrastructure for future studies of health and disease using a life-course perspective are key. 101,042 pregnant women were recruited in first trimester at first antenatal visit at the GP’s during a massive enrolment plan between 1996-2002 and 96,986 children resulting from the pregnancies are being followed through.34

The Danish HIV Cohort Study(DHCS)35 collects data to study temporal changes in the demographic composition of the HIV population. The effects of the antiretroviral therapy is recorded alongside mortality, any new AIDS-defining events etc. All clinics treating HIV infected patients in Denmark participate in DHCS. As treatment is restricted to eight departments of infectious diseases and medicines are delivered free of charge, medicines cannot be purchased from pharmacies in Denmark.

The Soon-Pregnant Cohort Study36 is a web based study investigating risk factors for delayed fecundability and miscarriage. Women are between 18-40 years old, trying to become pregnant and not using contraceptives or fertility treatments. Feasibility of web based cohorts is also being explored in this study.

The Danish Newborn Screening Biobank (NBS-Biobank)37 from 1976, collects blood spots of all newborns to screen for Phenylketonuria, congenital hypothyroidism and toxoplasmosis in order to improve screening, statistics and eventually diagnostics later in infancy.

The Gerda Frentz Cohort (GFC)38 studies the profile and true incidence of non-melanoma skin cancer and was initiated as the registration of cancers was incomplete in the Danish Cancer Registry.

The DANVIR Cohort39 records prevalence and mortality with chronic viral hepatitis (Hep B, Hep C) and its comorbidities with cancer and cirrhosis.

33 Data collection began in 1996, and was nationwide by 1999. Danish Epidemiology Science Centre, Statens Serum Institut. 34 http://www.cls.ioe.ac.ukpage.27aspx?&sitesectionid =342&sitesectiontitle=Danish+National+Birth+Cohort 35 Data collected from 1995 onwards. Department of Infectious Diseases, Copenhagen University Hospital. 36 Snart Gravid-The Danish Web based Pregnancy Planning study. Mikkelsen, Ellen M et al. “Cohort Profile: The Danish Web- Based Pregnancy Planning Study—‘Snart-Gravid.’” International Journal of Epidemiology 38.4 (2009): 938–943. PMC. Web. 24 June 2015. 37 Data with dried blood spots collected from 1982 onwards. Department of Clinical Biochemistry, Statens Serum Institute 38 Data collected from 1995. Department of Clinical Epidemiology. Århus University Hospital. 39 Data has been collected once from January 1 1995 to end 2006. Updates are planned at intervals of three years. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

3.1.3 Genome Data in Denmark

It appears that genetic research in Denmark is The Danish Reference Genome Project44 is a database not specifically funded by private firms, scientific of 30 (of an expected 150) individual, fully mapped educational institutes or government institutions alone. genomes from the Danish population. It allows detailed Rather, funding and support seem to be co-established analysis of the individual genetic differences between and funding is mostly to large research initiatives, the individuals and is seen as a starting point for genomic efforts being a prominent path. individualised treatments in the future. The database is small, thus providing a benchmark on who is a normal Genome research has benefitted with numerous public Dane and a perceived deviation from this normal, thus private partnerships and efforts initiated by Danish a cause of illness. The database is administered by private companies like Novo Nordisk A/S, Carlsberg Genome Denmark. Laboratory, Statens Serum Institute, Christian Hansen’s Lab, Danisco, Leo Pharma, Lundbeck Pharma, Danish Platform for Large-scale Sequencing and Neurosearch, Nordic BioScience Diagnostics A/S etc. Bioinformatics is a collaboration between the University of Copenhagen, the Technical University of Denmark The Danish Parliament in 1991, recognising the need (DTU), Aarhus University and Aalborg University and will for channelising research, funding and intellect in co-operate with Bavarian Nordic A/S, Beijing Genomics fundamental research setup The National Research Institute Europe A/S and Genomic Expression ApS. This Foundation40 (Danmarks Grundforsikningsfond) as an platform brings Beijing Genome Institute (BGI) Europe independent organisation. Funding is effected through to establish what will be the world’s largest and most Centers of Excellence (CoE), but various programs and elite genome research lab in the world. initiatives towards the internationalisation of Danish research is supported. 3.1.4 Biobanks Danmarks Nationale Biobank See Appendix for List of CoE for healthcare in Denmark The Danish health system has routinely collected Genome Denmark41 is a national platform for sequencing biological material from a large number of individuals and and bioinformatics involving universities, hospitals and this is documented and physically stored at the National private companies and one of their strongest research Biobank.45 The main purpose of the Danish National agendas is to use genomic research for improved Biobank is to give scientists from Denmark and abroad efficiency of personalised treatment and healthcare overview and access to more than 16 million biological delivery in the future. samples in both existing and future collections.

The Center for Genomic Epidemiology42, located within The Danish Biobank Register gives researchers online the Danish Technical University, works to set up a access to combined data from all the biobanks central database which will provide internet based participating in the Danish National Biobank initiative. solutions with a simplification of the total genome Through national collaboration large biobanks, based at sequence information and comparison. This activity hospitals, universities and other research institutions in is being expanded to include microorganisms (vira and Denmark, regularly submit data to the Danish Biobank parasites, metagenomic samples) which can be path Register. Data from the biobanks are linked to disease breaking for epidemiology studies. codes and demographic information from national

The Center for Biological Sequence Analysis43 conducts basic research in the field of bioinformatics and systems biology. The group has a highly multi-disciplinary profile including molecular biologists, biochemists, medical 40 www.dg.dk doctors, physicists and computer scientists. CBS 41 www.genomedenmark.dk 42 http://www.genomicepidemiology.org/index.html represents one of the largest bioinformatics groups in 43 www.cbs.dtu.dk academia in Europe. 44 http://www.genomedenmark.dk/english/about/ referencegenome/ 45 www.biobankdenmark.dk 23 administrative registries on an individual level. 4. Accessing the health data

Anonymous data sets are made available to researchers While healthcare data in Denmark looks apparently well around the world through a web-based search system. documented and retrieval of huge volumes of data pose So far, information from the following biobanks are no doubt, there are still technical and administrative available through the Danish Biobank Registry: frameworks that regulate the access of data and its resolution. Procedurally, some registers can be accessed 1. The Danish Patobank (approx. 12 million tissue at the research institution administering the data with samples from national hospitals) due permissions while some data is on an individual level needs approval of multiple agencies for access and 2. The Danish Cancer Society’s project biobank “Kost, analysis. A typical approval process might involve the kræft og helbred” (samples from 57,000 cohort Datatilsynet (Danish Data Protection Agency), Statens participants) Serum Institute and Statistics Denmark. Agencies like CIRRAU facilitate in organising research within 3. The new DNB biobank at Rigshospitalet (50,000 the premise of necessary paperwork. This could take samples collected annually) anywhere between 12-18 months.

For further reading refer Sec.4.6 4. The Cancer biobanks (de Kliniske Kræftbiobanker) Samples from the Danish National Birth Cohort (300,000 samples) 4.1 Legislation

5. Blood spots from all newborn Danes since 1976 (1,9 Data entry, access and retrieval in Denmark is million samples) governed by the Act on Processing of Personal Data (Persondataloven)46 The Act on Processing of Personal 3.1.5 A note on social and economic data Data (Act No. 429 of 31 May 2000) entered into force on 1 July 2000. The regulations of the Act on Processing of Economic and social data is collected with as much Personal Data apply to the processing of personal data breadth and depth as healthcare data in Denmark, if the processing is conducted for scientific or statistical making data analysis rich and addressing multi party purposes. needs. Personal data is understood as data about a person The Danish Data Protection Agency and the Danish that directly or indirectly can be identified. Data Archive are still responsible for the overall authorisation and archival of this data but the collection Processing is understood as all forms of handling of is distributed at the municipality, regional and national data, i.e. collection, registration, storage, application, levels. Aggregated analysis of this data can be found etc. 47 with Denmark’s Statistics and to some extent on Danskernessundhed.dk and eSundhed.dk However, the act does not apply to data already made anonymous. Anonymous data is defined as any data that cannot be traced back to an individual.

4.2 The Danish Data Protection Agency Datatilsynet

The Data Protection Agency48 is the state authority that oversees the Act on Processing of Personal Data. The agency consists of a Data Council (DataRåd) - and 46 Read the Act here: http://www.datatilsynet.dk/ english/the-act-on-processing-of-personal-data/ a secretariat. The agency maintains an inventory of all read-the-act-on-processing-of-personal-data/ databases maintained in the country under the category compiled-version-of-the-act-on-processing-of-personal-data/ “Fortegnelsen”. However this is not offered for public 47 http://www.datatilsynet.dk/ As retrieved on 18th July 2015 48 www.datatilsynet.dk use as a handbook or directory of databases yet. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

4.3 The Danish Data Archive Dansk Data Arkiv

The Danish Data Archive (DDA) is Denmark’s national will be reported to the GP only on approval from the social science data archive acquiring, preserving and patient. Or a case of psychiatric treatment at a hospital disseminating data generated from social science, can be kept out of the patient’s journal if the patient so health science and history. Through an agreement with wishes, and only reflected in the hospital’s own case the Danish Data Protection Agency the DDA preserves file. This choice of disclosure is a vital part of the trust data materials containing personal identifiers. The data framework that data collection in Denmark builds on. and personal identifiers are stored separately and a The role of the Act on Processing of Personal Data and special permit is required for the access to the data. The the Danish Research Ethical Council are nuanced in that DDA adheres to metadata documentation guidelines the transfer of personal data between registers (for set by the DDI.49 example, between the hospital’s register and a Cancer Register, or the case of information on hospitalisation 4.4 Danish Research Ethical Council being intimated to the GP ) is governed by the Act itself Den Nationale Videnskabsetiske Komité while the extrapolation of data from any of the registers is under the purview of the Danish Research Ethical Under the Committee Act, it is the responsibility of the Council and prior approval is mandatory. committee system on health research ethics to ensure that from a research ethic point of view, health research However, some agencies are helping bridge this gap by projects are carried out in a responsible manner, and facilitaing help with paper work and legislative issues. that the rights, safety and wellbeing of trial subjects For example, the following agencies are useful participating in such biomedical research projects are references : protected, while at the same time possibilities are being created for the development of new, valuable Center for Register based Research (NCCR) is a national knowledge.50 They are the single authorising body institution, established in 2000, and embedded in the for all register based research for both research and Faculty of Social Sciences in Aarhus in 2005, contributes commercial purposes. to the integration of health sciences and and social register based research to strengthen the social 4.5 The Danish Council of Ethics scientific use of register data. The center, apart from Etiskråd advice, helps in the practical participation in researches of this kind.52 The Council was established in 1987 as a result of a 53 directive from the Parliament to advise the Parliament Center for Integrated Register-based research (CIRRAU) and other Government agencies on new bio and gene located at Århus University facilitates interdisciplinary technologies, while creating discussions and debates research in the academic areas of Social Sciences, around this area. Members of the council are honorary health sciences and elements from Natural Sciences and elected for their experience in this field. The Council based on databases and biobanks within a framework advises and creates debate on biotechnology, which of translational population studies. Five categories of affect human life, our nature, the environment, and data constitute the CIRRAU data resource: food. The Council also works with ethical issues related 1. The Family Relations Database to the healthcare sector.51 2. Economic, Social and Contextual Data 3. Prescription Data 4.6 Challenges of intersectoral data 4. Geocodes access 5. Data Contributions from Participnts

Data transfer between sectors in many cases needs approval from the patients. This means that while 49 http://samfund.dda.dk/dda/default-en.asp data coverage is complete at the organisational level, 50 http://www.cvk.sum.dk/ 51 extracted databases may not reflect the true incidence http://www.etiskraad.dk/ 52 http://ncrr.au.dk/om-centret/ of cases. For example, an incidence of hospitalisation 53 http://cirrau.au.dk/ 25

5. Society as a Cohort

The data from various national registries and condition- activities in primary health care for administrative use specific clinical databases are linkable with varying and to contribute to research in public health. Since degrees of effort and parsing to an individual’s level. this register is concerned with reimbursements, it is The challenge if any, is of data completeness. The considered fairly complete. In this context, every person Danish National Health Service Register for Primary Care with a CPR number, i.e anyone legally residing in Denmark (Sygesikringsregisteret, NHSR)54 contains information leaves a trackable and comprehensible trail of data on about the activities of health professionals contracted quality of life and consumption of resources. with the tax-funded public healthcare system. These are general practitioners (GPs), practicing medical Presented here are three different scenarios of specialists, physiotherapists, dentists, psychologists, viewing a person’s health data along his lifetime, which chiropractors, and chiropodists. The purpose of the represented aptly, presents itself as a cohort and register, which is within the remit of the National represented collectively, is a cohort conducted on an Board of Health (Sundhedsstyrelsen), is to document entire society.

Illustration 6 : Society as a Cohort -A scenario view on how data is populated and could be accessed over a lifetime. A sample of a healthy person’s health data gathered through a lifetime. Numerous screening efforts for a spectrum of conditions results in population data that is rich with health indicators that help determine population health trends, genetic predispositions and lifestyle corelated to life stages. This scenario view gives us an idea of how meticulously our lives are documented, even in the case of a largely healthy life with few interactions with the healthcare system.

WELL BEING DIAGNOSIS HOSPITAL GERIATRIC

Patobank Landspatientregisteret Dansk Palliativ Database BIRTH REGISTER Radiologiske ydelser Landsdækkende DEATH REGISTER DRG (diagnoserelaterede Danes treated at foreign grupper) hospitals (DUSAS) Database for Geriatri Dødsårsagsregisteret Dansk Anæstesi Database Demensdatabasen

Akut mave-tarm kirurgi databasen

Fælles akutdatabasen

Akut Kirurgi Databasen

MEDICATION

Lægemiddelstatistikregisteret Danske medicinpriser

THERAPY

Tværsektoriel Rehabiliteringsdatabase

Genoptræningsregisteret

54 http://www.ssi.dk/Sundhedsdataogit/Registre%20og%20 kliniske%20databaser/De%20nationale%20sundhedsregistre/ Sundhedsokonomi%20finansiering/Sygesikringsregister.aspx MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

Furthermore, the Danish population is considered as was established in 194055 and was reinvestigated in a being largely homogenous and non-transient which is follow-up study 46 years later. Sørensen et al56 revisited ideal for long term population (also gene-pool) studies . this established cohort and linked to data from the DCR to follow patients for the development of malignant With a wide range of register based studies, cohorts neoplasms after diagnosis of neurofibromatosis 1. The can be easily assembled to observe developments registry-based approach was also used in the same across a group for specific factors. An example is the study to investigate risk factors and survival.57 Borberg cohort of patients with neurofibromatosis that

Illustration 7 : Society as a Cohort - Scenario of accident and physical & mental rehabilitation cases

From such a scenario view, it is easier to understand and infer the treatment quality in hospitals and post trauma care. It is very relevant to varied sectors from transportation and traffic ( for e.g response time), disbursement of welfare funds (for e.g unemployment in case of long rehab or disability) etc. if the data can be parsed and visualised in interesting ways. The various registers that would /could be populated by a single incident are shown here under. When seen in conjunction from birth and various other registeries that are populated as part of the healthcare, it is interesting to analyse the incidence of accidents, quality of treatment and thus healthcare.

An accident which involves admittance in a hospital is treated as a case of secondary care. All documentation pertaining to this episode is maintained only at the hopital, including medications given and any tests conducted. Should the patient have any degree of rehabilitation provided, this is also kept within the hospital records. All this data is shared with the GP only after prior consent from the patient on discharge. If the patient so wishes, the entire data or a part of it can be kept unreported, exclusively within hospital records. This is very interesting when considering the true breadth of all the registries.

WELL BEING HOSPITAL REHAB

Tværsektoriel Landspatientregisteret Rehabiliteringsdatabase BIRTH REGISTER ACCIDENT Genoptræningsregister- Danes treated at foreign et DEATH REGISTER hospitals (DUSAS) Ulykkeregisteret Dødsårsagsregisteret Dansk Anæstesi Mobilt Akut System Database Databasen (MAS) PSYCHIATRY Database over børns dødsfald efter ulykker Akut mave-tarm kirurgi Dansk Intensiv Database Klinisk database for databasen børne- og ungdomspsy- Dansk transfusionsdatabase kiatri Fælles akutdatabasen Psychiatric Research Register Akut Kirurgi Databasen Coercive Psychiatry Register Organdonationsdata- basen INCIDENT

Alkoholbehandlingsregisteret

Stofmisbrugere i Behandling

Dansk Depressiondatabase

Dansk apopleksiregister

55 Clinical and genetic investigations into tuberous sclerosis and Recklinghausen’s neurofibromatosis; contribution to elucidation of interrelationship and eugenics of the syndromes. Borberg A. Acta Psychiatr Neurol Scand Suppl. 1951; 71():1-239. 56 Long-term follow-up of von Recklinghausen neurofibromatosis. Survival and malignant neoplasms. Sørensen SA, Mulvihill JJ, Nielsen A. N Engl J Med. 1986 Apr 17; 314(16):1010-5. 57 Nguyen-Nielsen M, Svensson E, Vogel I, Ehrenstein V, Sunde L. Existing data sources for clinical epidemiology: Danish registries for studies of medical genetic diseases. Clinical Epidemiology. 2013;5:249-262. doi:10.2147/CLEP.S45228. 27

Illustration 8 : Society as a Cohort - Scenario of screening, treatment and care in chronic ailments

In this wellness journey of a person, some instances of chronic care have been mapped. Specific registers have been instituted for these illnesses. Viewing the registers as different scenarios allows one to see the relevance of the registers . This scenario makrs the registers that reflect the life-long use of resources in a chronic condition, treatment, efficacy and outcomes. Much can be learnt about demographic tendencies in developing chronic illnesses and the state’s role in prevention and cure. Some reflecting databases are also mentioned here, as the earliest screening factors or diagnosis has happened through other procedures. Read in tandem, regsiters across these stages could provide vital insights into early screening, genetic predisposition and lifestyle.

Chronic genetic Chronic Lifestyle WELL BEING DIAGNOSIS Patobank HÆMOPHILIA DIABETES BIRTH REGISTER Radiologiske ydelser DEATH REGISTER DRG (diagnoserelaterede Rehabilitation Register Dansk Voksen Diabetes grupper) Database Dødsårsagsregisteret

Dansk Register for børne- og CEREBRAL PALSY ungdomsdiabetes Den landsdækkende klinisk Opfølgningsprogram for kvalitetsdatabase for Cerebral Parese screening af diabetisk retinopati og maculopati Dansk Føtalmedicinsk Database Det Nationale Diabetesreg- isteret

Dansk Diabetes Database

CANCER MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

5.1 Demographic focus : Women, Children, Elderly & Veterans

Several registers have been established to study specific demographic groups, as clinical databases, registers and cohort studies. The health of women has been a particular area of focus with cervical cancer, mammography screening, breast cancer, gynaecological cancers being important. Reproductive health of women is important especially seen with other population indicators and thus quality of birthing, IVF, abortion, pregnancy screening, early pregnancy related abortions, birth & complications are all registered. Cohorts have been established to study pre-pregnancy, pregnancy and eventually birth and development of a child in close relationship to its mother thus giving researchers a chance to develop population prognosis especially with health indicators for genetically and nurture induced predisposed conditions.

Children, with some registers concerning birthing share register data with women, but on their own have several health registers especially for conditions like childhood diabetes & cancer. Together with health records maintained at schools, this can be extrapolated with family data and education data to analyses data for welfare schemes, future job markets, diet & nutrition studies, mental health etc.

Geriatric care is a huge component of social welfare & healthcare, which gives no surprise to detailed information maintained Nationwide database of Geriatrics, the Danish Palliative Care database and the Danish Dementia Database. Apart from these there are other socio-economic databases maintained by the different kommunes on spending for the elderly in home care, institutional nursing, food delivery, transport etc.

The Armed forces maintain the Sessions Register, but we have been unable to find further information on this and related registers in the scope of this study. 29

Illustration 9: Women and Children: Unique and symbiotic datasets for future population studies

A specific case of registers pertaining to women and children is considered The State benefits from this understanding for a better structuring of its here. While most of these registers concern demographic specific data, welfare funds and infrastructure. some are about reproductive health, birth and early infancy. These registers are closely linked by their very nature and have been shown as such in the While some of these registers are popluated based on true incidents, many are illustration. populated by surveys and more recently entire cohorts are being tested with an exclusive online platform with only online engagement with participants. The The larger Danish cohort studies on Soon to be pregnant women, and child Soon to be Pregnant study is one such cohort being conducted only through development could be read with smaller nation wide registers on pregnancy online participation. screening, complications, birthing and post natal care. They are insightful on various levels- from life style to life stage - a clear insight can be reached upon on co-related demographic shifts, patterns in income groups and this could have huge inputs in pharmaceutical research and go-to market strategy for such companies. ter for børne- og ungdomsdiabetes tkraft Database DDD-Dansk Regis Dansk Bræs Dansk Gynækologisk Cancer Database base ata amilie F d Diabetes Bo dy Cancer h rds th Birt t School heal reco a yment ear omen Child l w Emp lo t living y Genera Cancer tion ed) - Firs Educa ese ter Reproduction ykiatri egis ebral Par Danish National Birth Cohort ed) - Indskoling og Udskoling (BMI, højde & vægt) Børnedatabasen (Børns helbr Dansk børnecancer r er børns dødsfald efter ulykker Opfølgningsprogram for Cer Database ov Klinisk database for børne- og ungdomsps Børnedatabasen (Børns helbr MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

6. Mapping the Databases

With a plethora of registers, databases, clinical studies and cohorts, it was imperative to see them mapped on the body - the body being the metaphor for areas of study. The obvious inferences were the areas where a lot of research is done, but it also revealed the many areas of concern where there is a lack of systematic data collection.

The many registers that have been enlisted in the report are essentially specific health condition data drawn from the National Patient Register (NPR) and categorised into a specific register. So the individual registers do not provide any extra breadth of information than the NPR. Yet, the depth of clinical data specifically logged into specific registers makes cross sectoral research rich and diverse. Individual factors can be measured against other socio-economic factors to project new connections and value for other stakeholders.

The body view of the registers also allows one to see the different research strategies adopted to study a particular area - For example, female reproductive sciences in the Danish population is now studied with smaller registers collecting nation wide data on gynaecological cancer, cervical cancer, birthing and abortion. There are specific registers recording IVF treatment and abortion in early pregnancy. Further there are cohort studies that are recording the months leading upto conceiving (pre-pregnancy environment and factors ) and birth and child rearing. This way, a part of the selected population has a deeply documented wellness journey which could be very valuable for other stakeholders.

Pharmaceutical research stakeholders who also invest heavily into health research delve into huge volumes of anonymised data for research on new drug delivery or their future strategies. Illustration 10 : A body based view on health registers, cohorts and clinical studies

Studies and registers pertaining to men and women are The diabetes and cancer registers are extrapolated presented in this illustration. The numbers correspond separately, the numebr of registers reflecting the dimension to the List of Registers presented in the Appendix to this of the illness. However the registers for the children and report. This allows us to see the health areas where we elderly have to be viewed with other socio-economic have the largest amounts of data which is reflective of registers as these are intesive on time and healthcare population health and governmental priority. personnels in a welfare system.

Please refer to the appendix for The List of Registers.

(109) (149)

(4,7,8,12,28,34, 49,63) (88,99,115,126, 143, 147, 151) (163)

(100)

neck (13) (108)

(30,33, 52) (18,31, 40,41, 42, 43,55 )

(125) (122,138,141,142 ) (22, 25) (10)

(29,37,38,39, 48) (123) (15) (30,33) (11, 26) (148) (24,91) (27, 35, 50) (14,16,17,19,80) (92,119, 162) (118) (65, 113) (6, 21,62,64,111)

(114,144) (150)

(58, 59,60)

Screening database (32,44,45,46,47, 70) National Register

Cohort Studies

(119, 96,163) Nationwide (17,23,80,92) Clinical Study (15,22,24,25) (165,166) (148) Demographic Data

(59,60,150, 58,64)

DIABETES (40) (37,38,48,112) (39) (11,143,149) (23, 37,96,117) (14,) (117,38) (153,168) (98,102,103,104,124,132,133,134) CANCER (83,84,85,114,115,144,148) (116) (6,9,13,21,26,28,29,30,40,50,56,58,60,62,64,108,111) (53,126) (22,24,25 ) (160) MEN WOMEN (9,10,16,150) MAPPING THE THE HEALTHCARE HEALTHCARE DATA DATA LANDSCAPE LANDSCAPE IN INDENMARK DENMARK

CONTEXTUAL EXTRAPOLATION OF HEALTHCARE DATA

Data for Calculation and verification of business cases. Demographics, Segments and Costs

The Danish health care data landscape is fragmented but very rich. When this dataset is combined with demographic from Denmark Statistics and budget allocations from various regions, it will provide an in-depth view into the segment of healthcare and how the spending patterns are organised. This is a vital piece of market analytics that help existing companies but also point to new areas that startup and foreign investors could take deep interest. We foresee new service possibilities, optimisations and novel products to fill the any gaps that are emerging from the landscape. Data to quantify non-economic effects of new solutions. Support Innovation Decisions

Interestingly the data available in the Danish healthcare system is a mix of qualitative and quantitative data. A large pool of journal entries and text logs could actually be mined to extract a semantic model that can inform and support decision making on levels like quality of service, quality of counselling and support etc. There are numerous extrapolations that might support non economic indicators that would make the overall system better for the end user or patient support. MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

Data for basis of new solutions, collaborations

Data is the new currency of the digital age. The Danish health data is not just a goldmine waiting to be tapped but also could form the basis for totally new types of solutions – esp new collaborative ones. Traditionally the diagnosis to care to prognosis pathway has been a fragmented journey both in terms of data and patient care. Modern data technologies will create a more unified opportunities for stakeholders to engage in a more seamless data landscape. This cementing of data process will also enable new business cases to emerge from this confluence. This collaborative culture around health care innovation fuelled by data would be a strong growth market and enormous potential – esp for non traditional players. Data for pattern analysis at large scale for planning and research.

The Danish healthcare system is quite intensive (excellent raw material) but is yet to see the emergence of large scale pattern recognition models. The cause – effect relationship and spotting of trends have happened in relative isolation based on disease areas (e.g diabetes) or demographic basis (e.g elderly). This is mostly due to the professional specialisation and administrative legacy of many of these initiatives. This is going to change rapidly with the introduction of many big data technologies which will enable the cross finding and correlation mapping of various data sets at very large scale. There are numerous opportunities to be exploited in terms of large scale epidemiological studies, market analysis and better optimisation strategies based on macro-economic view of the health care system. This though would need extensive cross organisational collaboration and reduction of administrative silos. There are indications of such an approach already being used in research – esp genetic and phenotype. This approach is yet to be systematically done on administrative and economic aspect of the healthcare system MAPPING THE HEALTHCARE DATA LANDSCAPE IN DENMARK

CONCLUSION

The Danish health care data is perhaps the earliest of its kind and thus, is a fantastic opportunity as well as a challenge at the same time.

The richness and depth of data combined with a unique person identification number is a gold mine of data driven opportunities for new types of services and products to evolve. On the other hand the legacy of the old systems means, many of these datasets are fragmented and reside in numerous organisational and technological silos.

In this study, we realised the extent to which new possibilities could emerge in tandem with new technological trends. Some of the new technological trends that will highly influence the data landscape of the Danish healthcare systems are :

1. Big data analytics - the rise of cloud enabled solutions for identifying and analysing new treatments. ‘ 2. Quantified self - Patients being empowered with data collation tools and devices at home.

3. Genetic modelling driven Machine learning and pattern recognition at large scale, typically driving new pharmaceuticals.

4. IOT in hospitals - sensor enabled data collection of both therapy as well as patient status.

5. Software as a service - new forms of services that are entirely enabled by software tools

6. Service robotics - the automatisation and augmentation of many basic services esp. in convalescence and elderly care.

7. Personalised Medicine - tailor made therapy based on genetic as well as physiological data.

8. Telemedicine - remote care enabled by new communication technologies

9. Tertiary care - the emergence of new types of services that are more focused on overall wellbeing rather than diseases.

These trends are global and some of them will be pioneered in Denmark and many in other parts of the world but the foundation for the fostering of these new innovations are deeply engrained in the Danish Society. This is due to 5 major factors that are unique to the Danish system :

1. Very rich data sets from many decades - the basis of many types of new data enabled services

2. Good governance and regulation on data privacy - balanced by an open data approach to non sensitive data

3. Data Policy and politics - a well debated but progressive policy environment that works in the favour of citizens and end users.

4. Pharma and health tech cluster in greater Copenhagen area and neighbouring southern Sweden.

5. Pervasive internet and data connectivity across the entire country.

We can foresee the rise of a new type of health care economy that is driven by entrepreneurship, public private partnerships and university based research. These are clear trends and the signals to support them are visible though there is a long way for these to flourish into a rich ecosystem with the right business models. The coming decade will be the rise of the data driven economy for the Danish health tech cluster. MAPPING THE THE HEALTHCARE HEALTHCARE DATA DATA LANDSCAPE LANDSCAPE IN DENMARKIN DENMARK

THE NEXT STEPS

The Danish Healthcare system is abundant with opportunities. Denmark has had a long tradition in providing advanced healthcare with universal access to all its citizens. The quality of healthcare depended for long on good clinical practice supported by purchasing modern technology to support it. At this point in time, the confluence of good medicine and management alone is not enough. The new paradigm of healthcare is clearly moving towards a system that is based on collaboration, data driven and precision-tailor made medicine. This combined with change in social structures influenced by media and internet technologies, shift in demographic etc will make it necessary for the Danish healthcare system to evolve itself and the logical next steps as a recommendation could be as below:

1. The use of data driven methods to drive public procurement - The public sector is the largest buyer of healthcare in Denmark, its a clear value addition to have a more accurate, evidence based tendering process. There are huge efficiency gains to be made and the public-private partnership initiatives already point to the right directions. Still the purchasing of healthcare services and products will have to be smarter for both cost-benefit of the system itself but also to nurture pioneering systems and innovation. Luckily the Øresund region has a huge health-tech industry that should be an excellent collaborator in the process.

2. Using connected technology with a more collaborative clinical practice - The interaction between the patient and caregiver will undergo major shifts driven by the quantified self, web technologies and communication technologies. This will question the current way in which both primary and secondary healthcare sector is organised. Its a natural progression to build new systems to support this paradigm in the participatory traditions of the welfare model.

3. A data driven approach to preventive healthcare - Following advances in genomics, bio-informatics, predictive analytics, sensor driven data gathering etc is a clear global tendency that will change citizen expectation very fast in Denmark, considering how fast and early on the social media trend is adopted in Denmark. Having the policies and governance in place to embrace this trend would be crucial link to growth for this sector.

4. The myth of the rich data set in Denmark - Paradoxically the Danish healthcare system is a gold mine of data to drive the above three paradigms due the excellent data quality and density available. Though the data is trapped in organisational silos and data architecture is not designed for collaborative use at scale. There is an urgent need to build unified data interchange protocols and allow faster turnaround for data mashups to happen. These above paradigm shifts are also ripe with opportunity for delivering better healthcare to citizens but also nurturing entrepreneurship and growth for companies.The following are some clear pointers that could pave the road to support healthy growth.

1. Digital Marketplace

Copenhagen Healthtech Cluster could enable a digital market place that brings together research, clinical practice and commercial partners in tandem with public agencies and hospitals. This marketplace would need to be very governed and regulated for it to be a trustworthy exchange of value. It has to be imagined as an online platfrom where insights and ideas blend in a very practical context.

2. Sandbox development environment

To support the Digital Marketplace it’s highly recommended to create a virtual sandbox that has a wide selection of anonymised sample data from the various databases identified in this report. This will have to be wrapped in a modern API (Application programming interface) and due care should be given to data availability, quality and privacy. The participants in the sandbox should be able to logically scale the solution they prototype by allowing a pre-screened and easy connectivity at the right terms. This would be vital to make this a long lasting system. This sort of facility would make it much easier for companies and startups to prototype solutions faster in collaboration with clinical and regulatory settings.

3. Smart Procurement

The biggest and most obvious beneficiary of a digital marketplace would public purchasers who can both seed specific problems and needs into the system. If there is a critical mass of participants it would create healthy competition letting the most innovative as well as cost effective solutions to foster. APPENDIX

List of National Registers and Clinical Databases

Abreviat CODE TAG Kategori (Reg / CDb / Coh.) Data source (Danish) Data source (English) Data collected Purpose Data owner Contact person Link Referenced from ion Specific 30 92 23 28, 1 Procedure, Kliniske Støtteregistre Donorregistret Donor Register - 1990-> Administration [email protected] http://www.organdonor.dk/ Patientinformati Kliniske Støtteregistre Livstestamentregister Statement of Will Register - Administration http://www.organdonation.dk/organdon 2 on ationsdatabasen/ Danish National Biobank http://www.biobankdenmark.dk/Danish Danish Biobank Tel: 3268 5199 / 3268 3 Diagnosis Kliniske støtteregistre Patobank The Danish Pathology Bank - Scientific Research Registry 9163, %20Biobank%20Register/Biobanks%2 [email protected] 0in%20the%20register.aspx k Competence Center for Clinical Quality http://webcache.googleusercontent Landsdækkende kliniske databaser / Attention Deficit Hyperactivity http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r 4 Condition ADHD databasen 2011- > Clinical quality and Information National Clinical Database Disorder Database Technology West kvalitetsdatabaser/adhd-databasen/ kkp.dk/om-rkkp/de-kliniske- (KCKS-West) kvalitetsdatabaser/ http://webcache.googleusercontent Acute Kompetencecenter http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / for Klinisk Kvalitet og .com/search?q=cache:http://www.r 5 diseases,Ulcer, National Clinical Database Akut Kirurgi Databasen Emergency Surgery Database 2003- > Clinical quality kvalitetsdatabaser/akut- Hospital Biostatistik, Nord kkp.dk/om-rkkp/de-kliniske- kirurgidatabasen/ kvalitetsdatabaser/ Anne Nakano KCKS- UOF- http://webcache.googleusercontent Landsdækkende kliniske databaser / West, .com/search?q=cache:http://www.r 6 Cancer, urinary Blærecancer Danish Bladder Cancer Committee DABLAC Clinical quality Danish Regions [email protected]. http://www.uofdatabase.dk/ National Clinical Database A kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ Kristian Antonsen, vicedirektør, Bispebjerg https://www.regionh.dk/kliniskedatabas Specific Landsdækkende kliniske databaser / Hospital, 7 Procedure, Dansk Anæstesi Database Danish Anaesthesia database DAD 2005-> Clinical quality RegionH er/nationale-databaser/Sider/Dansk- National Clinical Database kristian.antonsen.01@r Brain egionh.dk, Tlf. 3531 Anaestesi-Database-DAD.aspx 2941 https://www.regionh.dk/Sundhed/P Condition, Kompetencecenter Data Manager : Lasse olitikker-Planer- 8 Landsdækkende kliniske databaser / Dansk apopleksiregister Danish Stroke Register - 2003 - > Clinical quality for Klinisk Kvalitet og http://www.kcks-vest.dk/kliniske- Cardio, Brain National Clinical Database Pirk, KCKS,West kvalitetsdatabaser/apopleksi/ Strategier/Documents/Rapport_fra Biostatistik, Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Kvalitetskonsulent Susanne Stenkær http://webcache.googleusercontent Landsdækkende kliniske databaser / Danish Regions, .com/search?q=cache:http://www.r 9 Cancer, Child Dansk børnecancer register Danish Childrens Cancer Register DBCR 2003- > Clinical quality Ravnkilde - http://www.dapho.dk/ National Clinical Database KCKS, vest Susanne.Stenkaer@sta kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ b.rm.dk, Maj-Britt Jensen, E.mail Landsdækkende kliniske databaser / Danish Breast Cancer Operative Århus 10 Women Dansk Brystkræft Database DBCG 1976-> Clinical quality [email protected], Tlf. 3866 www.dbcg.dk National Clinical Database Group Universitetshospital 0662 Sep 2010-> , https://www.regionh.dk/Sundhed/P KCKS, vest: olitikker-Planer- Condition, Landsdækkende kliniske databaser / Danish database for bariatric 2015-> includes Region H - KCKS 11 Obesity Dansk database for fedmekirurgi DFR Kvalitetskonsulent Strategier/Documents/Rapport_fra National Clinical Database surgery related plastic West Annette Odby surgery _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf KCKS, vest: http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / Quality of Kvalitetskonsulent .com/search?q=cache:http://www.r 12 Condition, mind Dansk Depressiondatabase Danish Depression database DDD 2011-> Danish Regions Lea Haller kvalitetsdatabaser/dansk- National Clinical Database Treatment depressionsdatabase/ kkp.dk/om-rkkp/de-kliniske- [email protected] kvalitetsdatabaser/ Statistics / data manager: Heidi Larsson Danish esophagus, 2003->, Danish Regions, (KCEB-north) Data http://webcache.googleusercontent Condition, Landsdækkende kliniske databaser / Dansk Esofagus-, Cardia- og http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r 13 cancer Gastroesophageal transitional DECV expanded after Clinical quality KCEB North, KCKS Manager Poul Erik National Clinical Database Ventrikelkarcinom database cancer and Stomach-cancer group 2007 West Schødt Schlosser kvalitetsdatabaser/decv/ kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ (KCKS-west) : [email protected] Styregruppeformand Olav Bjørn Pedersen, Email: [email protected], https://www.regionh.dk/kliniskedata Dansk Føtalmedicinsk Database Danish Ultrasound scannings Århus Tlf. 4033 1158 14 Women, Child Landsdækkende kliniske databaser / (ultralydskanninger i graviditeten) ?= Is FØTO 2008-> Scientific Research http://www.dfms.dk/ baser/nationale- during pregnancy database Universitetshospital Camilla Bernt Wulff, Tlf: National Clinical Database this the FØTO-databasen databaser/Sider/Foetalmedicinsk- 3545 3722 Database.aspx Camilla.Bernt.Wulff@re gionh.dk https://www.regionh.dk/Sundhed/P Condition, Landsdækkende kliniske databaser / Region H - olitikker-Planer- 15 Kompetencecenter Abdomen, Gall National Clinical Database Dansk Galdedatabase Danish gall database Strategier/Documents/Rapport_fra Øst _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Claus Høgdall, https://www.regionh.dk/kliniskedatabas Rigshospitalet, Tlf. 3545 Danish Gynaecological Cancer Women, Landsdækkende kliniske databaser / Dansk Gynækologisk Cancer Database DGCD 2005-> Clinical quality RegionH 4248 er/nationale-databaser/Sider/Dansk- 16 reproduction National Clinical Database Database Gynaekologisk-Cancer-Database- claus.hogdall@regionh. dk DGCD.aspx Hans Ulrik Friis- Andersen, [email protected]. https://www.regionh.dk/kliniskedata baser/nationale- 17 Condition, Landsdækkende kliniske databaser / Dansk Herniedatabase (ingvinalhernier Danish Hernia Database 1998-> Scientific Research Regionshospitalet dk www.herniedatabasen.dk reproduction National Clinical Database og ventralhernier) Horsens databaser/Sider/Dansk- Thor Schmidt , [email protected] Herniedatabase.aspx k Ann-Dorthe Zwisler, ado@si- https://www.regionh.dk/kliniskedata Statens Institut for folkesundhed.dk 18 Cardio Landsdækkende kliniske databaser / Dansk Hjerteregister Danish Heart Register DHR 2000-> Scientific Research karbase.dk baser/nationale- National Clinical Database Folkesundhed Monika Madsen, databaser/Sider/Dansk- monika.madsen.01@re Hjerteregister-DHR.aspx gionh.dk Annette Settnes, Hillerød Hospital, Specific Annette.Settnes@regio https://www.regionh.dk/kliniskedatabas nh.dk, Tlf: 4829 6237 19 Procedure, Landsdækkende kliniske databaser / Dansk Hysterektomi og Hysteroskopi Danish Hysterectomy and DHHD Oct 2003-> Scientific Research RegionH er/nationale-databaser/Sider/Dansk- reproduction National Clinical Database Database Hysteroscopy Database Sofia Kyndesen, Hysterektomi-og-Hysteroskopi- sofia.mi.jin.spaabaek.m Database-DHHD.aspx oeller.kyndesen@regio nh.dk,Tlf. 2992 0248 Competence Centre for Epidemiology https://www.regionh.dk/Sundhed/P Specific and Biostatistics, Data Manager: Lasse olitikker-Planer- 20 Procedure, Landsdækkende kliniske databaser / Dansk Intensiv database Danish intensive database DID 2008-> Analysis North & Competence Strategier/Documents/Rapport_fra National Clinical Database Pirk hospital Centre for Clinical _arbejdsgruppen_vedr_klinisk_kval Quality and Health itet_final.pdf Informatics, West. Peter Ingeholm, Tlf: +45 38 68 14 03 Email: peter.ingeholm.01@regi Danish Colorectal Cancer KRC / https://www.regionh.dk/kliniskedatabas 21 Cancer Landsdækkende kliniske databaser / Dansk Kolorektal Cancer Database 2001-> Clinical quality RegionH onh.dk er/nationale-databaser/Sider/Dansk- National Clinical Database Database DCCG Kontaktperson i KCKS- Kolorektal-Cancer-Database.aspx Øst: Mette Roed Eriksen, specialkonsulent https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- Cancer, 22 Landsdækkende kliniske databaser / Dansk Kvalitetsdatabase for Danish quality database for breast Kompetencecenter Women National Clinical Database brystkræftscreening cancer screening Strategier/Documents/Rapport_fra Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Birth, Landsdækkende kliniske databaser / Dansk Kvalitetsdatabase for Fødsler Danish Quality Database of Birth DKF Sep 2010-> Treatment quality 23 Child,women National Clinical Database KCKS, west: https://www.regionh.dk/Sundhed/P Region H - Landsdækkende kliniske databaser / Dansk Kvalitetsdatabase for Danish quality database for cervix Quality Consultant Lea http://www.kcks-vest.dk/kliniske- olitikker-Planer- 24 Cancer, DKLS 2008-> Clinical quality Kompetencecenter kvalitetsdatabaser/livmoderhalskraefts Strategier/Documents/Rapport_fra Women National Clinical Database livmoderhalskræftscanning screening Grey Haller : Nord [email protected] creening/ _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / Dansk kvalitetsdatabase for Danish Quality Database for Data Manager Pia .com/search?q=cache:http://www.r Cancer, DKMS 2008-> Clinical quality Danish Regions kvalitetsdatabaser/livmoderhalskraefts 25 Women National Clinical Database mammografiscreening Mammography Screening Andersen, KCKS, West kkp.dk/om-rkkp/de-kliniske- creening/ kvalitetsdatabaser/ Therapy Data Landsdækkende kliniske databaser / Dansk Lever- og Galdevejscancer Danish Liver and Biliary Cancer Peter Nørgård Larsen, 26 Cancer DLGCD 2011-> efficacy,Treatment Manager:Michael Rigshospitalet www.gicancer.dk National Clinical Database Databasen Database quality Due Larsen 1990-> But http://webcache.googleusercontent Landsdækkende kliniske databaser / Dansk Nefrologisk Selskabs Danish Nephrology Society Land Danish Society of .com/search?q=cache:http://www.r 27 Nephrology DNSL contains data Clinical quality www.nephrology.dk Nephrology (DNS) National Clinical Database Landsregister Register back to 1964 kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ Region H - KCKS West: Quality http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / Consultant :Annette http://www.dnog.dk/database kvalitetsdatabaser/dansk-neuro- 28 Cancer National Clinical Database Dansk neuroonkogisk register Danish neuro-oncology register DNOR Clinical quality Kompetencecenter Syd Ingeman onkologisk-register/ http://webcache.googleusercontent http://dpcg.gicancer.dk/Default.aspx?pI Landsdækkende kliniske databaser / Dansk Pancreas Cancer Database Dansk Pancreas Cancer Database DPCD 2011-> Clinical quality Danish Regions At KCKS West, Data .com/search?q=cache:http://www.r 29 Cancer National Clinical Database Manager: Jan Nielsen D=10 kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ http://webcache.googleusercontent Dansk Sarcome Gruppe http://www.ortopaedi.dk/index.php?id= Landsdækkende kliniske databaser / Dansk Sarkom Database Danish Sarcoma Database DSD 2009-> Clinical quality Danish Regions Tlf: 23 67 90 47, .com/search?q=cache:http://www.r 30 Cancer National Clinical Database 24 kkp.dk/om-rkkp/de-kliniske- [email protected] kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - Specific Landsdækkende kliniske databaser / Tlf.: +45 8942 4800 · olitikker-Planer- 31 Procedure, Dansk transfusionsdatabase Danish transfusion database DTDB 1997, 2007-> Investigative Kompetencecenter http://www.dtdb.dk/ Strategier/Documents/Rapport_fra National Clinical Database [email protected] Blood, Hospital Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Hos KCKS-vest: http://webcache.googleusercontent Landsdækkende kliniske databaser / Dansk Tværfagligt register for Hoftenære Danish Interdisciplinary Register for Kvalitetskonsulent http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r Acute Diseases 2003-> Clinical quality Danish Regions 32 National Clinical Database Lårbensbrud Femoral Thigh Break Annette Ingeman kvalitetsdatabaser/hoftenaere- kkp.dk/om-rkkp/de-kliniske- [email protected] laerbensbrud/ kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - tlf: 38633103 mail: olitikker-Planer- Condition, 33 Landsdækkende kliniske databaser / Database for behandling af Database for treatment of DANBIO 2006-> Clinical quality Kompetencecenter databasen@danbio- Orthopaedic National Clinical Database reumatologiske patienter rheumatologic patients https://danbio-online.dk/ Strategier/Documents/Rapport_fra Øst online.dk _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf https://www.regionh.dk/Sundhed/P olitikker-Planer- Landsdækkende kliniske databaser / Database for klinisk kvalitet i psykiatrisk Data for clinical quality in DIPSY ? Region H 34 Psychiatry National Clinical Database behandling psychiatric treatment Strategier/Documents/Rapport_fra _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf https://www.regionh.dk/Sundhed/P Region H - Landsdækkende kliniske databaser / Database for chronical kidney Selskabsecretary@nep olitikker-Planer- Condition, Database for kronisk nyresvigt 1990-> Clinical quality Kompetencecenter http://www.nephrology.dk/ Strategier/Documents/Rapport_fra 35 Nephrology National Clinical Database failure hrology.dk Syd _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Monitor, treatment Condition, Landsdækkende kliniske databaser / Databasen for Astma i Danmark 2015-> 36 Respiration National Clinical Database The database for Asthma in Denmark quality KCKS-Vest:Katrine http://webcache.googleusercontent Landsdækkende kliniske databaser / DDD-Dansk Register for børne- og DDD- Danish Register of Child and https://www.regionh.dk/kliniskedatabas .com/search?q=cache:http://www.r 37 Child, Diabetes DSBD 1996-> Clinical quality Danish Regions Abildtrup Nielsen er/nationale-databaser/Sider/Dansk- National Clinical Database ungdomsdiabetes Adolescent Diabetes. [email protected] kkp.dk/om-rkkp/de-kliniske- Diabetes-Database.aspx kvalitetsdatabaser/ KCKS-Vest:Katrine Condition, Landsdækkende kliniske databaser / DDD-Danish Adult Diabetes DDD- Monitor, treatment 38 Diabetes DDD-Dansk Voksen Diabetes Database 1999-> Danish Regions Abildtrup Nielsen National Clinical Database Database DVDD quality [email protected] DDD-Diabase - The nationwide DDD-Den landsdækkende klinisk KCKS-Vest:Katrine Landsdækkende kliniske databaser / clinical database for screening of DDD- Monitor, treatment http://www.kcks-vest.dk/kliniske- 39 Condition, kvalitetsdatabase for screening af ? Danish Regions Abildtrup Nielsen Diabetes National Clinical Database diabetic retinopathy and Diabase quality [email protected] kvalitetsdatabaser/diabase/ diabetisk retinopati og maculopati maculopathy Peter de Nully Brown, [email protected] h.dk Blood, Cancer, Landsdækkende kliniske databaser / Den Hæmatologiske Fællesdatabase - The Hematologic Common Tel: +45 3545-1128 https://www.regionh.dk/kliniskedatabas 40 LYFO 2005-> Clinical quality RegionH er/nationale-databaser/Sider/Den- Condition National Clinical Database Akut leukæmi Database - Acute leukemia Sofia Kyndesen sofia.mi.jin.spaabaek.m Haematologiske-Faellesdatabase.aspx oeller.kyndesen@regio nh.dk "Peter de Nully Brown, [email protected] h.dk,Tel: +45 3545- https://www.regionh.dk/kliniskedatabas Blood, Landsdækkende kliniske databaser / The Hematologic Common 1128 41 Den Hæmatologiske Fællesdatabase - Database - Chronic myeloid LYFO 2005-> Clinical quality RegionH er/nationale-databaser/Sider/Den- Condition National Clinical Database Kroniske myeloide sygdomme Sofia Kyndesen, Haematologiske-Faellesdatabase.aspx disorders sofia.mi.jin.spaabaek.m oeller.kyndesen@regio nh.dk" Peter de Nully Brown, [email protected] h.dk,Tel: +45 3545- https://www.regionh.dk/kliniskedatabas 42 Blood, Landsdækkende kliniske databaser / Den Hæmatologiske Fællesdatabase - The Hematologic Common 1128 Condition National Clinical Database Lymfom Database - Lymphoma LYFO 2005-> Clinical quality RegionH Sofia Kyndesen, er/nationale-databaser/Sider/Den- sofia.mi.jin.spaabaek.m Haematologiske-Faellesdatabase.aspx oeller.kyndesen@regio nh.dk Peter de Nully Brown, [email protected] h.dk https://www.regionh.dk/kliniskedatabas 43 Blood, Landsdækkende kliniske databaser / Den Hæmatologiske Fællesdatabase - The Hematologic Common Tel: +45 3545-1128 Condition National Clinical Database Myelomatose Database - Multiple myeloma LYFO 2005-> Clinical quality RegionH Sofia Kyndesen er/nationale-databaser/Sider/Den- Haematologiske-Faellesdatabase.aspx sofia.mi.jin.spaabaek.m oeller.kyndesen@regio nh.dk Anne Hjelm, KCKS https://www.regionh.dk/Sundhed/P West. E-mail: http://www.kcks-vest.dk/kliniske- olitikker-Planer- 44 Orthopaedic Landsdækkende kliniske databaser / Den ortopædiske fællesdatabase - Dansk The united orthopedics database - kvalitetsdatabaser/hoftealloplastik- National Clinical Database hoftealloplastik Register Danish hip arthroplasty Register DOF 2005-> Clinical quality Region H [email protected] Strategier/Documents/Rapport_fra k , tel 7841 3986 register/ _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Anne Hjelm, KCKS http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / Den ortopædiske fællesdatabase - Dansk The united orthopedics database - West. E-mail: 45 Orthopaedic DOF 2005-> Clinical quality Region H kvalitetsdatabaser/knaealloplastik- National Clinical Database knæalloplastik Register Danish knee arthroplasty Register [email protected] k , tel 7841 3987 register/ Anne Hjelm, KCKS http://www.kcks-vest.dk/kliniske- Landsdækkende kliniske databaser / Den ortopædiske fællesdatabase - Dansk The united orthopedics database - West. E-mail: 46 Orthopaedic DOF 2005-> Clinical quality Region H kvalitetsdatabaser/korsbaends- National Clinical Database korsbåndsregister Danish cruciate ligament register [email protected] k , tel 7841 3988 register/ Anne Hjelm, KCKS The united orthopedics database - Landsdækkende kliniske databaser / Den ortopædiske fællesdatabase - Dansk West. E-mail: http://www.kcks-vest.dk/kliniske- Danish shoulder arthroplasty DOF 2005-> Clinical quality Region H 47 Orthopaedic National Clinical Database skulderalloplastik register [email protected] kvalitetsdatabaser/skulderalloplastik- Register k , tel 7841 3989 register/ http://www.ssi.dk/Sundhedsdataogit/Re Mette Kramer Pedersen gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port 48 Diabetes Landsdækkende kliniske databaser / Statens Serum , Tlf.: 3268 5142 , National Clinical Database Det Nationale Diabetesregisteret Diabetes register NDR 1996-> Scientific Research Institut /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ [email protected] /Sygdomme%20leagemidler%20behan docname=10765412.PDF dlinger/Diabetesregisteret.aspx https://www.regionh.dk/Sundhed/P KCKS, vest: Landsdækkende kliniske databaser / The national schizophrenia Region H , KCKS Kvalitetskonsulent Lene http://www.kcks-vest.dk/kliniske- olitikker-Planer- 49 Condition, Mind Det nationale skizofrenidatabase Clinical quality Strategier/Documents/Rapport_fra National Clinical Database database Vest Korshøj - kvalitetsdatabaser/skizofreni/ [email protected] _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Anne Nakano KCKS- UOF- http://webcache.googleusercontent Landsdækkende kliniske databaser / West, .com/search?q=cache:http://www.r 50 Cancer, nephro Kidneycancer Danish Kidney Cancer Committee DAREN Clinical quality Danish Regions [email protected]. http://www.uofdatabase.dk/ National Clinical Database CA kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- Landsdækkende kliniske databaser / Kompetencecenter 51 Blood National Clinical Database Klinisk vene database Clinical vein database Strategier/Documents/Rapport_fra Øst _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf https://www.regionh.dk/Sundhed/P Region H - Det Landsdækkende kliniske databaser / Chronic obstructive pulmonary KOL / Katrine Abildtrup http://www.kcks-vest.dk/kliniske- olitikker-Planer- Condition, Kronisk obstruktiv lungesygdom ? Clinical quality nationale Strategier/Documents/Rapport_fra 52 Respiratory National Clinical Database disease DRKOL Nielsen [email protected] kvalitetsdatabaser/kol/ Indikatorprojekt _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Kirsten Vinding, Kirsten.Laila.Vinding@r https://www.regionh.dk/kliniskedatabas Specific syd.dk Landsdækkende kliniske databaser / Landsdækkende database for Geriatri Nationwide database of Geriatrics GER 2004-> Clinical quality RegionH er/nationale- 53 Procedure, National Clinical Database Thor Schmidt, databaser/Sider/Landsdaekkende- Elderly [email protected] database-for-Geriatri.aspx k Jeanne Duus Johansen, https://www.regionh.dk/kliniskedatabas 54 Condition Landsdækkende kliniske databaser / Landsdækkende Klinisk Database for Nationwide Clinical Database of [email protected] Scientific Research RegionH Monika Madsen, er/nationale-databaser/Sider/Klinisk- National Clinical Database Kontaktallergi Contact Allergy database-for-Kontaktallergi.aspx monika.madsen.01@re gionh.dk Nikolaj Eldrup MD Ph.D., Tlf. 3092 2346, https://www.regionh.dk/kliniskedatabas [email protected] 55 Cardio Landsdækkende kliniske databaser / Landsregisteret Karbase / Karbase The Danish Vascular Registry 1993-> Clinical quality RegionH er/nationale- National Clinical Database Landsregister Katrine Roos databaser/Sider/Landsregistret- Prechtkatrine.roos.prec Karbase.aspx [email protected] Landsdækkende kliniske databaser / Monitorering af pakkeforløb for kræft Monitroing of pathways for cancer 56 Cancer National Clinical Database Tlf: 78 45 09 50, E-mail: Specific Landsdækkende kliniske databaser / Organdonationsdatabasen Organ Donation Database April 2010 - > Quality Assessment 57 Procedure, National Clinical Database [email protected] Anne Nakano KCKS- UOF- http://webcache.googleusercontent Landsdækkende kliniske databaser / West, .com/search?q=cache:http://www.r 58 Cancer,Men Peniscancer Danish Penis Cancer Committee DAPEC Clinical quality Danish Regions [email protected]. http://www.uofdatabase.dk/ National Clinical Database A kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ Landsdækkende kliniske databaser / Danish benign Prostatic 59 Prostrate, Men Prosbase National Clinical Database Hyperplasia Database Anne Nakano KCKS- UOF- http://webcache.googleusercontent Cancer, Landsdækkende kliniske databaser / West, .com/search?q=cache:http://www.r 60 Prostatacancer Danish Prostate Cancer Committee DAPRO Clinical quality Danish Regions [email protected]. http://www.uofdatabase.dk/ Prostrate, Men National Clinical Database CA kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ http://www.ssi.dk/Sundhedsdataogit/Re Linda Saabye gistre%20og%20kliniske%20databaser Statens Serum /De%20nationale%20sundhedsregistre ssi.dk 61 Biobank Biobank Vævsanvendelsesregisteret The Tissue Register VAR 2004-> Scientific Research Institut Kongerslev, Tlf.: 3268 5138, [email protected] /Dodsaarsager%20biologisk%20materi ale/Vaevsanvendelsesregisteret.aspx Anne Nakano KCKS- http://webcache.googleusercontent West, .com/search?q=cache:http://www.r 62 Cancer Landsdækkende kliniske databaser / Register uro-onkologisk fællesdatabase Danish Urological Cancer Group UoF Clinical quality Danish Regions http://www.uofdatabase.dk/ National Clinical Database [email protected]. kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- Condition, 63 Landsdækkende kliniske databaser / Kompetencecenter http://www.kcks-vest.dk/kliniske- Schlerosis National Clinical Database Sclerosebehandlingsregistret The schlerosis treatment register DMSG ? Clinical quality kvalitetsdatabaser/sclerose/ Strategier/Documents/Rapport_fra Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Anne Nakano KCKS- http://webcache.googleusercontent West, Landsdækkende kliniske databaser / Testiscancer Danish Cancer of the testis UOF- Clinical quality Danish Regions http://www.uofdatabase.dk/ .com/search?q=cache:http://www.r 64 Cancer, Men National Clinical Database Committee DATECA [email protected]. kkp.dk/om-rkkp/de-kliniske- dk kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - Det olitikker-Planer- 65 Condition National Indikator Project NIP Akut mave-tarm kirurgi databasen NIP Treatment quality nationale Strategier/Documents/Rapport_fra Indikatorprojekt _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Patientinformati 66 on Patientinformation Ventetider venteinfo.dk Waiting Time Admin/ Case 67 Registration, Sagsbehandling Administration af udleveringstilladelser Hospital http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser /De%20nationale%20sundhedsregistre http://www.laeger.dk/portal/pls/port Admin/ Case Statens Serum Hanna Joensen, Tlf.: 68 Registration, Sagsbehandling Autorisationsregisteret Authorization Register AUT Administrative /Personoplysninger%20sundhedsfaglig al/!PORTAL.wwpob_page.show?_ Institut 3268 5133, [email protected] %20beskeaftigelse/Autorisationsregist Hospital docname=10765412.PDF eret.aspx, http://sundhedsstyrelsen.dk/da/ds/opsl agautreg Admin/ Case 69 Registration, Sagsbehandling Ordinationer af kopipligtige lægemidler Hospital http://www.laeger.dk/portal/pls/port 70 Orthopaedic Statistik Bevægelsesregisteret Movement Register Administrative al/!PORTAL.wwpob_page.show?_ docname=10765412.PDF 71 Statistik Danmarks Statistics Denmarks Statistics Kristian Nielsen, http://www.ssi.dk/Sundhedsdataogit/Re Tel:3268 5135, gistre%20og%20kliniske%20databaser Landspatientregisteret - Aktivitet på National Patient Register - Activity LPR 1976-> Administrative Statens Serum [email protected] 72 Hospital Statistik diagnosegruppe on diagnosis group Institut /De%20nationale%20sundhedsregistre Erik Villadsen , Tel.: /Sygdomme%20leagemidler%20behan 3268 5131, [email protected] dlinger/Landspatientregisteret.aspx http://www.ssi.dk/Sundhedsdataogit/Re Kristian Nielsen, gistre%20og%20kliniske%20databaser Tel:3268 5135, /De%20nationale%20sundhedsregistre http://www.laeger.dk/portal/pls/port Landspatientregisteret - Aktivitet på National Patient Register - Activity LPR 1976-> Administrative Statens Serum [email protected] 73 Hospital Statistik diagnoseniveau on diagnosis level Institut /Sygdomme%20leagemidler%20behan al/!PORTAL.wwpob_page.show?_ Erik Villadsen , Tel.: dlinger/Landspatientregisteret.aspx, docname=10765412.PDF 3268 5131, [email protected] http://www.esundhed.dk/sundhedsregi stre/LPR/Sider/LPR01_Tabel.aspx Kristian Nielsen, http://www.ssi.dk/Sundhedsdataogit/Re Tel:3268 5135, National Patient Register - Statens Serum gistre%20og%20kliniske%20databaser [email protected] 74 Hospital Statistik Landspatientregisteret - Operationer Operations LPR 1976-> Administrative Institut /De%20nationale%20sundhedsregistre Erik Villadsen , Tel.: /Sygdomme%20leagemidler%20behan 3268 5131, [email protected] dlinger/Landspatientregisteret.aspx Kristian Nielsen, http://www.ssi.dk/Sundhedsdataogit/Re Tel:3268 5135, gistre%20og%20kliniske%20databaser Landspatientregisteret - Radiologiske National Patient Register - LPR 1976-> Administrative Statens Serum [email protected] /De%20nationale%20sundhedsregistre 75 Hospital Statistik ydelser Radiological services Institut Erik Villadsen , Tel.: /Sygdomme%20leagemidler%20behan 3268 5131, [email protected] dlinger/Landspatientregisteret.aspx http://www.ssi.dk/Sundhedsdataogit/Re Christian Theodor Yderregisteret (doctors, dentists, GP Register (doctors, dentists, Statens Serum gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Admin, hospital 1995-> Administrative Ulrich, Tlf.: 3268 9065, 76 fysiotherapists etc.) Institut /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ fysiotherapists etc.) [email protected] /Personoplysninger%20sundhedsfaglig docname=10765412.PDF %20beskeaftigelse/Yderregisteret.aspx http://www.ssi.dk/Sundhedsdataogit/Re Register over danskere behandlet på gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port 77 DUSAS (Danes treated at foreign Statens Serum Kristian Nielsen, Tlf.: Admin,Hospital Statistik udenlandske sygehuse og aktivitet i hospitals) DUSAS 2002-> Administrative Institut 3268 5135, [email protected] /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ speciallægepraksis. /Sundhedsokonomi%20finansiering/DU docname=10765412.PDF SAS.aspx Statistikbanken REGR31, Regionernes 78 Admin,Hospital Statistik regnskaber efter område, funktion, dranst Regional Accounts & finances og art Sundhedsstyrelsens elektroniske stillings Electronic position and vacancy 79 Admin,Hospital Statistik og vakancetælling counting* http://www.ssi.dk/Sundhedsdataogit/Re Christian Theodor gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum 80 Women Sundhedsovervågning Abortregisteret Abortion Register ABR 1973-1994 & Administrative Ulrich, Tlf.: 3268 9065, /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ 2006-> Institut [email protected] /Graviditet%20fodsler%20born/Abortre docname=10765412.PDF gisteret.aspx 81 Reflecting Sundhedsovervågning Arbejdssskaderegister Register for Work Hazards Registers 82 Reflecting Sundhedsovervågning Bivikrningsovervågning Registers Milan Fajber, Tlf:3268 5143, [email protected] Margit Rasted, Tlf: 3268 http://www.ssi.dk/Sundhedsdataogit/Re 5153, [email protected] gistre%20og%20kliniske%20databaser 83 Cancer Sundhedsovervågning Cancerregisteret - Andre neoplasier Cancer register - Other neoplasias 1943-> Scientific Research Statens Serum Maya Christel Milter, /De%20nationale%20sundhedsregistre Institut Tlf: 3268 5141, /Sygdomme%20leagemidler%20behan [email protected] dlinger/Cancerregisteret.aspx Helle Rejnhold Sørensen, Tlf.: 3268 5210, [email protected] Milan Fajber, Tlf:3268 5143, [email protected] Margit Rasted, Tlf: 3268 http://www.ssi.dk/Sundhedsdataogit/Re 5153, [email protected] gistre%20og%20kliniske%20databaser Statens Serum Maya Christel Milter, /De%20nationale%20sundhedsregistre 84 Cancer Sundhedsovervågning Cancerregisteret - Kræftoverlevelse Cancer register - Cancer survival 1943-> Scientific Research Institut Tlf: 3268 5141, /Sygdomme%20leagemidler%20behan [email protected] dlinger/Cancerregisteret.aspx Helle Rejnhold Sørensen, Tlf.: 3268 5210, [email protected] Milan Fajber , Tlf:3268 5143, [email protected] Margit Rasted, Tlf: 3268 http://www.ssi.dk/Sundhedsdataogit/Re 5153, [email protected] gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Maya Christel Milter, 85 Cancer Sundhedsovervågning Cancerregisteret - Nye kræfttilfælde Cancer register - New occurences 1943-> Scientific Research Statens Serum /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ of cancer Institut Tlf: 3268 5141, /Sygdomme%20leagemidler%20behan docname=10765412.PDF [email protected] dlinger/Cancerregisteret.aspx Helle Rejnhold Sørensen, Tlf.: 3268 5210, [email protected] Danmark 86 Ventetid på danske apoteker Waiting time in Danish pharmacies Scientific Research Apotekerforening Patientombuddet [email protected] / Treatment Statens Serum http://www.dpsd.dk/ https://data.digitaliser.dk/alle?svco 87 Sundhedsovervågning Dansk Patient Sikkerheds Database Danish Patient Safety Database DPSD Scientific Research le- mr=20.00.00.00 quality Institut kontor@patientombudd et.dk Det Psykiatriske Centrale The Central Psychiatric treatments 88 Psychiatry Sundhedsovervågning Behandlingsregister register http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum Claudia Ranneries, Tlf.: 89 Death Sundhedsovervågning Dødsårsagsregisteret Cause of Death Register - Table DAR 1970-> Administrative Institut 32685128, [email protected] /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ /Dodsaarsager%20biologisk%20materi docname=10765412.PDF ale/Dodsaarsagsregisteret.aspx 90 Sundhedsovervågning Epidemiologisk overvågning 91 Sundhedsovervågning Gravid Screeningsregistret Pregnancy Screening Register http://www.ssi.dk/Sundhedsdataogit/Re 1994-2005 Maya Christel Milter, gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum 92 Women Sundhedsovervågning IVF-registeret (fertilitet) IVF-register (fertility) IVF manual register. Scientific Research Tlf: 3268 9082, /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ 2005-> digitally Institut [email protected] /Graviditet%20fodsler%20born/IVF- docname=10765412.PDF registered registeret.aspx http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser Treatment, Statens Serum Tlf.: 3268 5125, http://www.laeger.dk/portal/pls/port 93 Sundhedsovervågning Lægemiddelstatistikregisteret Medicines Register LSR 1994-> Scientific Research /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ Apotek Institut [email protected] /Sygdomme%20leagemidler%20behan docname=10765412.PDF dlinger/Laegemiddelstatistikregisteret.a spx 1970->, but not covering the Statens Serum Milan Fajber, Tlf.: 3268 http://www.laeger.dk/portal/pls/port 94 Diagnosis Sundhedsovervågning Landsdækkende register for Patologi Pathology register LRP whole country Scientific Research Institut 5143, [email protected] al/!PORTAL.wwpob_page.show?_ until 1997-> docname=10765412.PDF http://www.si- Bjarne Laursen or Center for folkesundhed.dk/Forskning/Sygdomme Hanne Møller, 95 Accident Ulykkeregisteret The Accident Register 1990-> Scientific Research Ulykkesforskning %20og%20tilskadekomst/Ulykker/Ulyk 65507777, kesregisteret.aspx 1973-1995. http://www.ssi.dk/Sundhedsdataogit/Re After 1995 Statens Serum Christian Theodor gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Birth, Child, Medicinsk Medical Birth Register MFR through Administrative Ulrich, Tlf.: 3268 9065, 96 Women Sundhedsovervågning fødselsregister/Fødselsregisteret Institut /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ landspatientregi [email protected] /Graviditet%20fodsler%20born/Fodsels docname=10765412.PDF steret register.aspx 97 Sundhedsovervågning PKU Registret The Neonatal Screening Biobank PKU http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser Statens Serum Claudia Ranneries, Tlf.: 98 Death, child Sundhedsovervågning Register for dødefødte Cause of Death Register - Stillborn DAR 1970-> Administrative /De%20nationale%20sundhedsregistre Institut 32685128, [email protected] /Dodsaarsager%20biologisk%20materi ale/Dodsaarsagsregisteret.aspx http://www.ssi.dk/Sundhedsdataogit/Re Emil Nygaard gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum Jørgensen, /De%20nationale%20sundhedsregistre 99 Psychiatry Sundhedsovervågning Register over anvendelse af Tvang i Coercive Psychiatry Register SEI 1999-> Scientific Research al/!PORTAL.wwpob_page.show?_ psykiatri Institut [email protected], Tlf.: 2230 /Sygdomme%20leagemidler%20behan docname=10765412.PDF 7904 dlinger/Tvang%20i%20psykiatrien.asp x The Health Agency's Central Dental 100 Sundhedsovervågning Sundhedsstyrelsens Centrale SCOR Odontologiske Register (SCOR), Register http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum Claudia Ranneries, Tlf.: 101 Therapy , Alkoholbehandlingsregisteret Alcohol treatment register NAB 2005-> Scientific Research /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ Addiction Institut 32685128, [email protected] /Sygdomme%20leagemidler%20behan docname=10765412.PDF dlinger/Alkoholbehandlingsregister.asp x Danish National Biobank Blood spots from all newborn Danes Blood spots from all newborn Danish Biobank Tel: 3268 5199 / 3268 http://www.biobankdenmark.dk/Danish 102 Birth, child 1976-> Scientific Research %20Biobank%20Register/Biobanks%2 since 1976 Danes since 1976 Registry 9163, [email protected] 0in%20the%20register.aspx k http://www.ssi.dk/Sundhedsdataogit/Re Børnedatabasen (Børns helbred) - First The Child Database (Children's Statens Serum Thomas Tjørnelund gistre%20og%20kliniske%20databaser 103 Child living year health) - First living year 2009-> Administrative Institut Nielsen, Tlf.: 3268 /De%20nationale%20sundhedsregistre 5162, [email protected] /Graviditet%20fodsler%20born/Borned atabasen.aspx http://www.ssi.dk/Sundhedsdataogit/Re Thomas Tjørnelund gistre%20og%20kliniske%20databaser Børnedatabasen (Børns helbred) - The Child Database (Children's Statens Serum Nielsen, Tlf.: 3268 /De%20nationale%20sundhedsregistre ssi.dk 104 Child Indskoling og Udskoling (BMI, højde & health) - Early and late primary 2009-> Administrative Institut vægt) school (BMI, height & weight) 5162, [email protected] /Graviditet%20fodsler%20born/Borned atabasen.aspx https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- 105 Cancer Cancerdatabase Cancer database DECV Kompetencecenter Strategier/Documents/Rapport_fra Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser Maya Christel Milter, http://www.laeger.dk/portal/pls/port Statens Serum /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ 106 Admin CPR (Det centrale personregister) CPR (The central person register) CPR Administrative Tlf: 3268 9082, /Personoplysninger%20sundhedsfaglig Institut [email protected] docname=10765412.PDF %20beskeaftigelse/CPR- registeret.aspx http://www.laeger.dk/portal/pls/port DAGS (Dansk Ambulant DAGS (Danish Ambulant Grouping Administrative al/!PORTAL.wwpob_page.show?_ 107 Grupperingssystem) system) docname=10765412.PDF Dahanca Secretariat, http://webcache.googleusercontent DAHANCA (Danish Head and Neck Danish Head and Neck Cancer DAHAN +45 7846 https://www.dahanca.oncology.dk/ .com/search?q=cache:http://www.r 108 Cancer Cancer Group) Group CA 2002-> Clinical quality Danish Regions 2620,DAHANCA@onco kkp.dk/om-rkkp/de-kliniske- logy.dk kvalitetsdatabaser/ 109 Gene Screening Danish Cytogenetic Register http://webcache.googleusercontent Statistik, Dansk Almenmedicinsk The Danish General Medicine .com/search?q=cache:http://www.r Reimbursement, Danish Regions KvalitetsEnhed, Tlf. http://www.dak-e.dk/ 110 GP Dansk almenmedicinsk database Database DAMD kkp.dk/om-rkkp/de-kliniske- Quality of treatment 6550 3054 kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- 111 Cancer, Urinary Dansk blærecancer Register Danish bladder cancer register Kompetencecenter Strategier/Documents/Rapport_fra Øst _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Voksen, Susanne https://www.regionh.dk/kliniskedatabas Stenkær, er/nationale-databaser/Sider/Dansk- 112 Diabetes Dansk Diabetes Database Danish Diabetes database DDD Scientific Research RegionH Susanne.Stenkaer@sta Diabetes-Database.aspx b.rm.dk http://webcache.googleusercontent Dansk kvalitetsdatabase for biologisk .com/search?q=cache:http://www.r 113 Condition behandling af kroniske inflammatoriske Clinical quality Danish Regions kkp.dk/om-rkkp/de-kliniske- tarmsygdomme (under etablering) kvalitetsdatabaser/ Lisbet Rosenkrantz Hölmich, Klinisk forskningslektor KCKS-Øst, Sofia https://www.regionh.dk/kliniskedatabas 114 Cancer, Skin Dansk Melanom Database Danish Melanoma Database DMD 1985-> Scientific Research RegionH Kyndesen er/nationale-databaser/Sider/Dansk- sofia.mi.jin.spaabaek.m Melanom-Database.aspx oeller.kyndesen@regio nh.dk Monika Madsen, https://www.regionh.dk/kliniskedatabas Cross-sectoral Rehabilitation Scientific Research RegionH monika.madsen.01@re 115 Therapy Tværsektoriel Rehabiliteringsdatabase Database er/nationale-databaser/Sider/Dansk- gionh.dk Galde-Database-DGD.aspx Mogens Grønvold, Bispebjerg Hospital [email protected], Tlf: 3531 3524 https://www.regionh.dk/kliniskedatabas 116 Elderly Dansk Palliativ Database Danish Palliative Database DPD 2010-> Scientific Research RegionH Maiken Bang Hansen, er/nationale-databaser/Sider/Dansk- [email protected] Palliativ-Database.aspx h.dk Tlf 3531 2082 Jannet Danish register for child and youth 117 Child, Diabetes Dansk Register for Børne- og DRBU 1996-> Scientific Research RegionH Svensson,JSVE0041@ www.DSBD.dk Ungdomsdiabetes diabetes heh.regionh.dk https://www.regionh.dk/kliniskedatabas Danish Bowel Cancer Screening Currently being Mette Roed Eriksen, 118 Cancer Dansk Tarmkræftscreening Database DTS Scientific Research RegionH er/nationale-databaser/Sider/Klinisk- Database established Region H Vene-Database.aspx https://www.regionh.dk/Sundhed/P olitikker-Planer- DUGAB Region H - Lene Korshøj Tel +45 119 Women Dansk urogynækologisk database Danish urogynaecological databse 2006-> Clinical quality Kompetencecenter 78 41 39 89 http://dugabase.dk/ Strategier/Documents/Rapport_fra ase Syd [email protected] _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://www.apotekerforeningen.dk/anal Danmark yser-og- http://dst.dk/da/Statistik/emner/sun 120 Apotek Danske medicinpriser Danish medicin prices Scientific Research Apotekerforening dhed# fakta/analyser/medicinpriser.aspx Health status of Danes (Numbers Statens Institut for 121 Admin Danskernes sundhed (Tal fra den Scientific research http://www.sundhedsprofil2010.dk/ nationale sundhedsprofil) fra the National Health Profile) Folkesundhed http://webcache.googleusercontent Database for Atrieflimren (under .com/search?q=cache:http://www.r 122 Heart etablering) Database for atrial fibriliation Clinical quality Danish Regions kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- DANHE 123 Condition Database for kronisk hepatitis B og C Database for chronic hepatitis B & Kompetencecenter Strategier/Documents/Rapport_fra C P Øst _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://www.si- Database over børns dødsfald efter Children's death by accident Statens Institut for Bjarne Laursen, bla@si- folkesundhed.dk/Forskning/Sygdomme 124 Death, Child 1975-2009 Scientific Research ulykker register Folkesundhed folkesundhed.dk %20og%20tilskadekomst/Ulykker/B%C 3%B8rned%C3%B8dsdatabase.aspx http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r 125 Respiratory Databasen for Astma (under etablering) Clinical quality Danish Regions kvalitetsdatabaser/databasen-for- kkp.dk/om-rkkp/de-kliniske- astma-i-danmark/ kvalitetsdatabaser/ Peter Johannsen, Tlf 3545 6702 [email protected] https://www.regionh.dk/kliniskedatabas 126 Elderly Demensdatabasen The dementia database Scientific Research RegionH gionh.dk er/regionh- Birgitte databaser/Sider/DemensDatabasen.as Rühmann,birgitte.ruhma px [email protected] http://www.laeger.dk/portal/pls/port 127 DRG (diagnoserelaterede grupper) DRG (diagnosis related groups) Administrative al/!PORTAL.wwpob_page.show?_ docname=10765412.PDF http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r 128 Emergency Fælles akutdatabasen Joint Emergency Databasen - 2013-> Clinical quality Danish Regions kvalitetsdatabaser/falles-akut- kkp.dk/om-rkkp/de-kliniske- databasen/ kvalitetsdatabaser/ 129 Admin Fælles Medicinkort United Medicine card FMK Administrative 130 Familieambulatoriet http://www.laeger.dk/portal/pls/port 131 ? Familiedatabasen Family database Scientific Research al/!PORTAL.wwpob_page.show?_ docname=10765412.PDF https://www.regionh.dk/Sundhed/P Region H - Det http://www.kcks-vest.dk/kliniske- olitikker-Planer- 132 Birth, child Fødselsregisteret - Fødsler Births register - Births Administrative nationale Strategier/Documents/Rapport_fra kvalitetsdatabaser/foedsler/ Indikatorprojekt _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Region H - Det Fødselsregisteret - Fødsler og Births register - Births and http://www.kcks-vest.dk/kliniske- 133 Birth,child Administrative nationale kvalitetsdatabaser/foedsler/ komplikationer complications Indikatorprojekt Region H - Det http://www.kcks-vest.dk/kliniske- 134 Birth, child Fødselsregisteret - Fødte Births register - New born Administrative nationale kvalitetsdatabaser/foedsler/ Indikatorprojekt http://www.ssi.dk/Sundhedsdataogit/Re Thomas Tjørnelund gistre%20og%20kliniske%20databaser Rehabilitation Register - All GES 2007-> Administrative Statens Serum Nielsen, Tlf.: 3268 135 Therapy Genoptræningsregisteret - Alle ydelser services Institut /De%20nationale%20sundhedsregistre 5162, [email protected] /Sygdomme%20leagemidler%20behan dlinger/Genoptraening.aspx http://www.ssi.dk/Sundhedsdataogit/Re Thomas Tjørnelund gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum 136 Therapy Genoptræningsregisteret - Planer Rehabilitation Register - Plans GES 2007-> Administrative Nielsen, Tlf.: 3268 /De%20nationale%20sundhedsregistre al/!PORTAL.wwpob_page.show?_ Institut 5162, [email protected] /Sygdomme%20leagemidler%20behan docname=10765412.PDF dlinger/Genoptraening.aspx http://www.ssi.dk/Sundhedsdataogit/Re Thomas Tjørnelund gistre%20og%20kliniske%20databaser Genoptræningsregisteret - Ydelser på Rehabilitation Register - Services GES 2007-> Administrative Statens Serum Nielsen, Tlf.: 3268 137 Therapy sygehus on hospital Institut /De%20nationale%20sundhedsregistre 5162, [email protected] /Sygdomme%20leagemidler%20behan dlinger/Genoptraening.aspx https://www.regionh.dk/Sundhed/P Region H - Det Condition, olitikker-Planer- Hjerteinsufficiens Heart insufficiency nationale 138 Cardio Strategier/Documents/Rapport_fra Indikatorprojekt _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf https://www.regionh.dk/Sundhed/P Region H - Det olitikker-Planer- 139 Accidents Hoftenære frakturer Femoral fractures nationale Strategier/Documents/Rapport_fra Indikatorprojekt _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf Interaktionsdatabasen (brug af Sundhedsstyrelsen, 140 Pharmacology lægemidler, naturlægemidler, stærke Interaction Database Scientific Research Sundhedsstyrelsen [email protected], http://www.interaktionsdatabasen.dk/ vitaminer, mineraler og grapefrugtjuice) Tlf.nr 44 88 97 57 http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r Kardiologisk fællesdatabase - Dansk Clinical quality Danish Regions 141 Cardio hjerterehabiliteringsdatabase kvalitetsdatabaser/hjerterehabilitering/ kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ http://webcache.googleusercontent http://www.kcks-vest.dk/kliniske- .com/search?q=cache:http://www.r Kardiologisk fællesdatabase - Dansk Clinical quality Danish Regions 142 Cardio hjertesvigtdatabase kvalitetsdatabaser/hjertesvigt/ kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- Klinisk database for børne- og Clinical database for child & youth 143 Child, BupBase Kompetencecenter Strategier/Documents/Rapport_fra Psychiatry ungdomspsykiatri psychiatry Syd _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://webcache.googleusercontent Klinisk database for Non-melanom Clinical database for non .com/search?q=cache:http://www.r NMSCC Clinical quality Danish Regions 144 Cancer hudkræft melanoma skin cancer kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ Medicinkombination (samtidig brug af Sundhedsstyrelsen, 145 Pharmacology lægemidler, naturlægemidler, stærke Medicine combination Scientific Research Sundhedsstyrelsen [email protected], http://www.medicinkombination.dk/ vitaminer, mineraler og grapefrugtjuice) Tlf.nr 44 88 97 57 Inger Gillesberg, Tlf. 38682482 E-mail https://www.regionh.dk/kliniskedatabas Rapid Response System Database Inger.Gillesberg@Regio 146 Emergency Mobilt Akut System Databasen (MAS) Scientific Research RegionH er/regionh-databaser/Sider/Mobilt-akut- (RSS database) nh.dk system-databasen-i-Region- Birgitte Rühmann , Hovedstaden.aspx birgitte.ruhmann@regio nh.dk Poul Jørgen Jennum,poul.joergen.je https://www.regionh.dk/kliniskedatabas [email protected] er/nationale-databaser/Sider/National- 147 Condition National database for Søvnapnø National database for Sleep Apnea NDOSA 2010-> Clinical quality RegionH Thor Schmidt, database-for-Soevnapnoe- [email protected] NDOSA.aspx k,Tlf: 4044 7480 http://webcache.googleusercontent DAREN 148 Nephrology, Nyrecancer Kidney Cancer Clinical quality Danish Regions .com/search?q=cache:http://www.r cancer CA kkp.dk/om-rkkp/de-kliniske- kvalitetsdatabaser/ Niels Wisbech Pedersen, Niels.W.Pedersen@rsy d.dk https://www.regionh.dk/kliniskedata Helle Mätzke baser/nationale- Cerebral Palsy, Follow-up Program for Cerebral Rasmussen, 149 Opfølgningsprogram for Cerebral Parese CPOP 2010-> Scientific ResearchRegionH www.cpop.dk databaser/Sider/Opf%C3%B8lgnin child Palsy [email protected] gsprogram-for-Cerebral-Parese- Sofia Kyndesen (CPOP).aspx sofia.mi.jin.spaabaek.m oeller.kyndesen@regio nh.dk

https://www.regionh.dk/Sundhed/P Region H - olitikker-Planer- 150 Cancer, Men Prosdatabasen The prosdatabase Kompetencecenter Strategier/Documents/Rapport_fra Nord _arbejdsgruppen_vedr_klinisk_kval itet_final.pdf http://www.laeger.dk/portal/pls/port 151 Psychiatry Psykiatriske Forskningsregister Psychiatric Research Register Scientific Research al/!PORTAL.wwpob_page.show?_ docname=10765412.PDF Sundhedsstyrelsen 152 Treatment Registreret Alternativ Behandler Registered Alternative Therapist RAB og http://www.rab-behandlere.dk/cm1/ Sundhedsministeriet Danish National Biobank Samples from the Danish National Danish Biobank Tel: 3268 5199 / 3268 http://www.biobankdenmark.dk/Danish Samples from the Danish National Birth Scientific Research %20Biobank%20Register/Biobanks%2 153 Birth, child Cohort Birth Cohort Registry 9163, [email protected]%20the%20register.aspx k

http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser http://www.laeger.dk/portal/pls/port Statens Serum Tlf.: 2230 7904 /De%20nationale%20sundhedsregistre 154 Army Sessionsregister The Army Register SER 2005-> Scientific ResearchInstitut /Personoplysninger%20sundhedsfagligal/!PORTAL.wwpob_page.show?_ %20beskeaftigelse/Sessionsregisteret.docname=10765412.PDF aspx DIS-Danmark | Rylevej DIS-Danmark 155 Admin Slægt og data Family tree & data 8, Bro | 5464 Brenderuphttps://www.slaegtogdata.dk/kilder (private) | Danmark Lægemiddelstyrelse Statistik over behandling med Statistics over treatment with blood Scientific Research ? https://digitaliser.dk/resource/3941 156 blodtryksmidler pressure devices n 62 http://www.ssi.dk/Sundhedsdataogit/Re gistre%20og%20kliniske%20databaser Statens Serum Claudia Ranneries, Tlf.:/De%20nationale%20sundhedsregistrehttp://www.laeger.dk/portal/pls/port Therapy, Stofmisbrugere i Behandling Drug addicts in treatment RegisterSIB 1996-> Administrative 157 Addiction Institut 32685128, [email protected]/Sygdomme%20leagemidler%20behanal/!PORTAL.wwpob_page.show?_ dlinger/Stofmisbrugere%20i%20behandocname=10765412.PDF dling.aspx http://www.ssi.dk/Sundhedsdataogit/Re Christian Theodor gistre%20og%20kliniske%20databaserhttp://www.laeger.dk/portal/pls/port Statens Serum Ulrich, Tlf.: 3268 9065, 158 Admin Sygesikringsregisteret Health Insurance Register 1990-> Administrative Institut /De%20nationale%20sundhedsregistreal/!PORTAL.wwpob_page.show?_ [email protected] /Sundhedsokonomi%20finansiering/Sydocname=10765412.PDF gesikringsregister.aspx Danish National Biobank Danish Biobank Tel: 3268 5199 / 3268 http://www.biobankdenmark.dk/Danish The Cancer biobanks (de Kliniske The Cancer biobanks (de Kliniske Scientific Research 159 Cancer Kræftbiobanker) Kræftbiobanker) Registry 9163, %20Biobank%20Register/Biobanks%2 [email protected]%20the%20register.aspx k Danish National Biobank The Danish Cancer Society’s Danish Biobank Tel: 3268 5199 / 3268 http://www.biobankdenmark.dk/Danish The Danish Cancer Society’s project project biobank “Kost, kræft og Scientific Research 160 Cancer biobank “Kost, kræft og helbred” Registry 9163, %20Biobank%20Register/Biobanks%2 helbred” [email protected]%20the%20register.aspx k Danish National Biobank Danish Biobank Tel: 3268 5199 / 3268 http://www.biobankdenmark.dk/Danish The new DNB biobank at Scientific Research 161 Biobank The new DNB biobank at RigshospitaletRigshospitalet Registry 9163, %20Biobank%20Register/Biobanks%2 [email protected]%20the%20register.aspx k

Oejvind Lidegaard, https://www.regionh.dk/kliniskedata Tidlig Graviditet og Abort Early Pregnancy and Abortion [email protected] 162 Women Ti-Gr-ab Scientific ResearchRegionH baser/nationale- Kvalitetsdatabase Quality Database k,Tlf.: 3545 0950 http://www.tigrab.dk/ databaser/Sider/Tidlig-graviditet- Katrine Roos Precht og-abort-kvalitetsdatabase.aspx Multiple Jens Overgaard Tel: http://webcache.googleusercontent databases, 163 Tumorer i øjne Eye Oncology Group DOOG Clinical quality Danish Regions 89492629, .com/search?q=cache:http://www.r earliest from [email protected] http://doog.dk/ kkp.dk/om-rkkp/de-kliniske- 1946. kvalitetsdatabaser/ Erik Kann, [email protected] https://www.regionh.dk/kliniskedatabas 164 Eyes Websyn Online eye-sight Scientific ResearchRegionH Birgitte Rühmann, er/nationale- birgitte.ruhmann@regiodatabaser/Sider/Websyn.aspx nh.dk Examples of aggregated healthcare data from Statistics Denmark

TAG Data source (English) Data source (Danish) Abreviation Purpose Open/Closed Data owner Data collected Link

Hospital usage - Population after person group, area, key figures, age and gender Sygehusbenyttelse - Befolkningen efter område, persongruppe, nøgletal, alder og køn INDAMP01 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospital usage - Population after diagnosis group, area, key figures, age and gender Sygehusbenyttelse - Befolkningen efter område, diagnosegruppe, nøgletal, alder og køn INDAMP02 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospital usage - Population - diagnosis group, key figures, age and gender Sygehusbenyttelse - Befolkningen efter diagnosegruppe, nøgletal, alder og køn INDAMP03 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalizations after area, diagnosis (99 grouping), age and gender Indlæggelser efter område, diagnose (99 gruppering), alder og køn IND01 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalizations after area, diagnosis (23 grouping), age and gender Indlæggelser efter område, diagnose (23 gruppering), alder og køn IND02 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalizations, bed days, patients after area, age and gender Indlæggelser, sengedage og indlagte patienter efter område, alder og køn IND03 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalizations, bed days, patients after area, diagnosis(99), age and gender Indlæggelser, sengedage og indlagte patienter efter område, diagnose (99), alder og køn IND04 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalizations, bed days, patients after area, number of bed days, age and gender Indlæggelser, sengedage og indlagte patienter efter område, antal sengedage, alder og kø IND05 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalized patients after area, dominant diagnosis (99), age and gender Indlagte patienter efter område, dominderende diagnose(99 gruppering) alder og køn INDP01 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Hospitalized patients after area, diagnosis (99), age and gender Indlagte patienter efter område, diagnose (99 gruppering), alder og køn INDP02 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations after family type, age and gender Indeks for indlæggelser efter familietype, alder og køn INDP03 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations of adults after index type, socio-economical status, age and gender Indeks for indlæggelser af voksne efter indekstype, socioøkonomisk status, alder og køn INDP04 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations of adults after education, age and gender Indeks for indlæggelser af voksne efter uddannelse, alder og køn INDP05 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations of children after the family's education, age and gender Indeks for indlæggelser af børn efter familiens uddannelse, alder og køn INDP06 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations after area, age and gender Indeks for indlæggelser efter område, alder og køn INDP07 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations after origin, age and gender Indeks for indlæggelser efter herkomst, alder og køn INDP08 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations after housing type, age and gender Indeks for indlæggelser efter boligtype, alder og køn INDP09 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for hospitalizations of children after index type, socio-economical status, age and gender Indeks for indlæggelser af børn efter indekstype, socioøkonomisk status, alder og køn INDP10 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant treatments after area, diagnosis (99 grouping), age and gender Ambulante behandlinger efter område, diagnose (99 gruppering), alder og køn AMB01 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant treatments after area, diagnosis (23 grouping), age and gender Ambulante behandlinger efter område, diagnose (23 gruppering), alder og køn AMB02 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant treatments and ambulant patients after area, age and gender Ambulante behandlinger og ambulante patienter efter område, alder og køn AMB03 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant treatments and ambulant patients after area, diagnosis (99), age and gender Ambulante behandlinger og ambulante patienter efter område, diagnose (99), alder og køn AMB04 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant treatments and ambulant patients after area, number of treatments, age and gender Ambulante behandlinger og ambulante patienter efter område, antal behandlinger, alder og AMB05 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant patients after area, dominant diagnosis (99 grouping), age and gender Ambulante patienter efter område, dominerende diagnose (99 gruppering), alder og køn AMBP01 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Ambulant patients after area, diagnosis (99 grouping), age and gender Ambulante patienter efter område, diagnose (99 gruppering), alder og køn AMBP02 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for ambulant treatments after family type, age and gender Indeks for ambulante behandlinger efter familietype, alder og køn AMBP03 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for ambulant treatments of adults after index type, socio-economical status, age and gend Indeks for ambulante behandlinger af voksne efter indekstype, socioøkonomisk status, ald AMBP04 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for ambulant treatments of adults after education, age and gender Indeks for ambulante behandlinger af voksne efter uddannelse, alder og køn AMBP05 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 Index for ambulant treatments of children after the family's education, age and gender Indeks for ambulante behandlinger af børn efter familiens uddannelse, alder og køn AMBP06 Scientific Research Open Danmarks Stati 2006-2013 http://www.statistikbanken.dk/statbank5a/default.asp?w=1920 List of Genome Research Centers

Institute Abbreviation Formed Website Instituional support Person

Center for Biological Sequence Analysis CBS 1993 http://www.cbs.dtu.dk/ DTU Ole Lund http://www.natlab.dtu.dk Center for Plant-Microbe Symbiosis CPMS / RISØ National Laboratory Henriette Giese The Royal Veterinary and Center for Molecular Plant Physiology PlaCe http://www.ku.dk/ Agricultural University. Birger Lindberg Møller University of Southern Center for Experimental Bio Informatics CEBI www.cebi.sdu.dk/ Denmark Matthias Mann Center for GeoGenetics - geogenetics.ku.dk/ Eske Willerslev Centre for Gene Regulation and Plasticity of http://www.ku.dk/ The Royal Veterinary and A Lars-Inge Larsson Neuro-endocrine Network - Wilhelm Johannsen Centre for Functional Genome Niels Tommerup, Research WJC 2001 http://www.wjc.ku.dk/ University of Copenhagen [email protected] Centre for Epigenetics epigenetics.ku.dk University of Copenhagen Kristian Helin Centre for mRNP Biogenesis and Metaolism mrnp.au.dk Aarhus University Torben Heick Jensen Report prepared by Leapcraft ApS

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