Objective To assess the frequency of discordance in patient’s (PtGA) and physician’s (PGA) global assessment, and to investigate whether higher discordance in female patients compared with male patients is associated with the physician’s sex in patients with rheumatoid arthritis (RA), axial spondyloarthritis (axSpA), and psoriatic arthritis (PsA). Methods PtGA, PGA, and other patient-related variables were retrieved from the Danish DANBIO registry, used nationwide to monitor patients with RA, axSpA, and PsA. A questionnaire was sent to all physicians registering in DANBIO (n = 265) regarding individual physician characteristics including sex and age. Discordance was defined as PtGA > 20 mm higher (or lower) than PGA. First encounters between patients and physicians were analyzed using descriptive statistics and mixed model regression analysis. Results Ninety physicians (34%) returned the questionnaire and were pairwise matched with 10,282 first patient encounters (8300 patients with RA, 524 axSpA, and 1458 PsA). The frequency of discordant (PtGA > PGA) encounters (not including PGA > PtGA seen in < 2%) in RA, axSpA, and PsA was 49.0%, 48.3%, and 56.5%, respectively. Discordance was more common in female patients with high scores on functional disability, pain, and fatigue across the 3 diseases, whereas it was independent of the physician’s sex. Conclusion In this study on Danish patients with RA, axSpA, and PsA, the PtGA was > 20 mm higher than the PGA in about half of the encounters, and more common in female patients of both female and male physicians. This finding highlights one of the challenges in shared decision making.

Introduction: Lolland-Falster consists of two islands in the southern part of Denmark where income is lower and life expectancy is shorter than in the general Danish population. It is a mixed rural-provincial area with approximately 100,000 inhabitants. The Lolland-Falster Health Study was initiated to gain knowledge on the determinants of health in this disadvantaged area. Methods: The study is a household-based prospective cohort study including people of all ages. The entire household of randomly selected inhabitants is allocated either to an invited group or to an uninvited, non-contacted control group. The data collection encompasses questionnaires, physical examination and biological samples, i.e. blood and urine for same-day analysis and biobank storage, and saliva and faeces also for biobank storage. The civil registration number links collected data for each individual, family and household, with information in Danish registers. The data collection started in February 2016 and is estimated to end by 2019 after the enrolment of 20,000 people. Analysis: A number of in-depth sub-studies are planned. Emphasis will be given to analysis of intra- and inter-family variations in health determinants, genetics, lifestyle and health status. Ethics: Region Zealand’s Ethical Committee on Health Research (SJ-421) and the Danish Data Protection Agency (REG-24-2015) approved the study. Trial registration: Clinicaltrials.gov (NCT02482896). Strength and limitations of this study: The strength of this study is that Lolland-Falster Health Study is a useful scientific resource for investigating cross-sectional difference and time trends within and between individuals, families and households. LOFUS adds diversity to the previously collected Danish population studies in urbanized areas. The limitation is that data collection is expensive. Conclusions: LOFUS will contribute to the knowledge on health in disadvantaged, rural-provincial areas.

Aim of database: The Danish Cardiac Rehabilitation Database (DHRD) aims to improve the quality of cardiac rehabilitation (CR) to the benefit of patients with coronary heart disease (CHD). Study population: Hospitalized patients with CHD with stenosis on coronary angiography treated with percutaneous coronary intervention, coronary artery bypass grafting, or medication alone. Reporting is mandatory for all hospitals in Denmark delivering CR. The database was initially implemented in 2013 and was fully running from August 14, 2015, thus comprising data at a patient level from the latter date onward. Main variables: Patient-level data are registered by clinicians at the time of entry to CR directly into an online system with simultaneous linkage to other central patient registers. Follow-up data are entered after 6 months. The main variables collected are related to key outcome and performance indicators of CR: referral and adherence, lifestyle, patient-related outcome measures, risk factor control, and medication. Program-level online data are collected every third year. Descriptive data: Based on administrative data, approximately 14,000 patients with CHD are hospitalized at 35 hospitals annually, with 75% receiving one or more outpatient rehabilitation services by 2015. The database has not yet been running for a full year, which explains the use of approximations. Conclusion: The DHRD is an online, national quality improvement database on CR, aimed at patients with CHD. Mandatory registration of data at both patient level as well as program level is done on the database. DHRD aims to systematically monitor the quality of CR over time, in order to improve the quality of CR throughout Denmark to benefit patients.

In composing multi-thematic questionnaires for the Lolland-Falster Health Study (LOFUS), we faced a range of challenges, for which we found limited guidance in the literature. LOFUS is a household-based population study covering multiple medical and social research areas and targeting the mixed rural-provincial population of 103,000 persons on the Danish islands Lolland and Falster. Households were randomly selected for invitation. In this paper, we describe and discuss challenges in developing the questionnaires related to stakeholders, content of the questionnaire, and the process itself. The development process was characterised by loops of learning and can be described as an iterative and incremental process. We propose recommendations to researchers and administrators involved in similar development processes, including awareness of the non-linearity and complexity of the process, a need for negotiations and navigation among multiple stakeholders, and acknowledgement of pragmatism as an inherent part of decisions made in the process.

The use of clinical quality registries as means for data driven improvement in healthcare seem promising. However, their use has been shown to be challenged by a number of aspects, and we suggest some may be related to poor implementation. There is a paucity of literature regarding barriers and facilitators for registry implementation, in particular aspects related to data collection and entry. We aimed to illuminate this by exploring how staff perceive the implementation process related to the registries within the field of cardiac rehabilitation in England and Denmark. A qualitative, interview-based study with staff involved in collecting and/or entering data into the two case registries (England N = 12, Denmark N = 12). Interviews were analysed using content analysis. The Consolidated Framework for Implementation Research was used to guide interviews and the interpretation of results. The analysis identified both similarities and differences within and between the studied registries, and resulted in clarification of staffs´ experiences in an overarching theme: ´Struggling with practices´ and five categories; the data entry process, registry quality, resources and management support, quality improvement and the wider healthcare context. Overall, implementation received little focused attention. There was a lack of active support from management, and staff may experience a struggle of fitting use of a registry into a busy and complex everyday practice. The study highlights factors that may be important to consider when planning and implementing a new clinical quality registry within the field of cardiac rehabilitation, and is possibly transferrable to other fields. The results may thus be useful for policy makers, administrators and managers within the field and beyond. Targeting barriers and utilizing knowledge of facilitating factors is vital in order to improve the process of registry implementation, hence helping to achieve the intended improvement of care processes and outcomes.

Driven by the potential values of using more patient-centred approaches in health care, the Danish government, regions and municipalities have agreed to introduce a standardised use of patient-reported outcomes (PRO) in all healthcare sectors in Denmark. Expecting benefits in particular at the individual patient level, the work to implement the national PRO policy is carried out under the auspices of the Ministry of Health. This highly systematic and comprehensive work elevates the development of PRO to a national level and centres around three main elements: development and feasibility tests of standardised PRO instruments within specific clinical areas, the development and implementation of a PRO instrument repository and a national IT infrastructure for the sharing of data across healthcare sectors. The paper describes these elements together with reports on the current state of implementation after six years of activities. PRO instruments have been developed and tested within eight clinical areas and - as intended - they show promising value for patients as well as healthcare professionals with respect to individual patient care. It has taken time for the supporting IT infrastructure to become fully operational in practice and, likewise, the strengthening of the implementation in and across healthcare sectors has required - and continues to require - considerable efforts from all stakeholders.