Table 1 Overview over the two cases: national cardiac rehabilitation registries in the UK and Denmark
The National Audit for Cardiac Rehabilitation (NACR) | The Danish Cardiac Rehabilitation Database (DHRD) | |
|---|---|---|
Country | The United Kingdom | Denmark |
No. of inhabitants | 65.6 million | 5.7 million |
Patient groups | Cardiovascular Disease | Coronary Heart Disease |
Registry coverage | National (England, Wales, Northern Ireland) | National |
Overall aim | Monitor and improve quality of outpatient* CR in the UK in order to improve the outcome for patients recovering from cardiac events | Monitor and improve quality of outpatient* CR in Denmark in order to improve the outcome for patients recovering from cardiac events |
First launched | 2005 | 2013 (fully operating 2015) |
First annual report | 2007 | 2016 |
Participation | Voluntary | Mandated by Danish law |
No. of participating sites | 224, hospitals and community | 35 hospitals |
No. of patient-level entries (annually) | Approx. 101,000 | Approx. 6000 |
Governed by | Steering committee | Steering committee |
Daily management | Administrative unit at the University of York. Team equivalent to 3,5 full time employees consists of a project lead, manager, training officer, data analyst and a secretary | The Danish Clinical Registries (http://www.rkkp.dk) The team consists of a manager, quality manager, epidemiologist, and a data manager, all of them with responsibility for DHRD as well as a number of other CQRs |
Technical management | In cooperation with NHS Digital | In cooperation with external provider |
Financing (except data collection) | The British Heart Foundation | Government (the Danish regions) |
Financing of data collection and entry | Financed locally by each participating trust | Financed locally by each participating department |
Data collection method | Electronic, web based Patient questionnaires are paper-based | Electronic, web based Patient questionnaires are paper-based |
Data collected and entered by | Clinicians (mainly) or dedicated data administrators | Clinicians (mainly) or secretaries |
User support opportunities | Training sessions, telephone, e-mail, written users manual | Telephone, e-mail, written users manual |
Data linkage | No | Yes (The Danish Civil Registration System; the Danish National Patient Register; the Danish National Database on Reimbursed Prescriptions) |
Patient consent | Opt out model | Not needed according to Danish law |
Programme level data | Collected partly via database, partly via separate questionnaire (annually) | Collected via separate questionnaire (every third year) |
Patient level data | Initiating event, treatment type, lifestyle, medication, demographics, pre-CR clinical outcomes and post-CR clinical outcomes, patient-reported measures | Initiating event, risk factor control, lifestyle, medication, demographics, pre-CR clinical outcomes and post-CR clinical outcomes, patient-reported measures |
Feedback | Annual report; participating sites can get their own data via the NACR/NHS Digital database link (with login); programme level data available on general NACR webpage; specific requests on demand | Annual report; participating sites can get their own data (monthly updated) through regional clinical management systems (with login); specific requests on demand |
More information available | Zwisler et al. Clin Epid 2016:8;451–456 [26] |