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Background In Scandinavia, there is a strong tradition for research and quality monitoring based on registry data. In Denmark, Norway and Sweden, 63 clinical registries collect data on disease characteristics, treatment and outcome of various cancer diagnoses and groups based on process-related and outcome-related variables. Aim We describe the cancer-related clinical registries, compare organizational structures and quality indicators and provide examples of how these registries have been used to monitor clinical performance, develop prediction models, assess outcome and provide quality benchmarks. Further, we define unmet needs such as inclusion of patient-reported outcome variables, harmonization of variables and barriers for data sharing. Results and conclusions The clinical registry framework provides an empirical basis for evidence-based development of high-quality and equitable cancer care. The registries can be used to follow implementation of new treatment principles and monitor patterns of care across geographical areas and patient groups. At the same time, the lessons learnt suggest that further developments and coordination are needed to utilize the full potential of the registry initiative in cancer care. publishedVersion

The debate on whether the peer-review system is in crisis has been heated recently. A variety of alternative systems have been proposed to improve the system and make it sustainable. However, we lack sufficient evidence and data related to these issues. Here we used a previously developed agent-based model of the scientific publication and peer-review system calibrated with empirical data to compare the efficiency of five alternative peer-review systems with the conventional system. We modelled two systems of immediate publication, with and without online reviews (crowdsourcing), a system with only one round of reviews and revisions allowed (re-review opt-out) and two review-sharing systems in which rejected manuscripts are resubmitted along with their past reviews to any other journal (portable) or to only those of the same publisher but of lower impact factor (cascade). The review-sharing systems outperformed or matched the performance of the conventional one in all peer-review efficiency, reviewer effort and scientific dissemination metrics we used. The systems especially showed a large decrease in total time of the peer-review process and total time devoted by reviewers to complete all reports in a year. The two systems with immediate publication released more scientific information than the conventional one but provided almost no other benefit. Re-review opt-out decreased the time reviewers devoted to peer review but had lower performance on screening papers that should not be published and relative increase in intrinsic quality of papers due to peer review than the conventional system. Sensitivity analyses showed consistent findings to those from our main simulations. We recommend prioritizing a system of review-sharing to create a sustainable scientific publication and peer-review system.

The growth in scientific production may threaten the capacity for the scientific community to handle the ever-increasing demand for peer review of scientific publications. There is little evidence regarding the sustainability of the peer-review system and how the scientific community copes with the burden it poses. We used mathematical modeling to estimate the overall quantitative annual demand for peer review and the supply in biomedical research. The modeling was informed by empirical data from various sources in the biomedical domain, including all articles indexed at MEDLINE. We found that for 2015, across a range of scenarios, the supply exceeded by 15% to 249% the demand for reviewers and reviews. However, 20% of the researchers performed 69% to 94% of the reviews. Among researchers actually contributing to peer review, 70% dedicated 1% or less of their research work-time to peer review while 5% dedicated 13% or more of it. An estimated 63.4 million hours were devoted to peer review in 2015, among which 18.9 million hours were provided by the top 5% contributing reviewers. Our results support that the system is sustainable in terms of volume but emphasizes a considerable imbalance in the distribution of the peer-review effort across the scientific community. Finally, various individual interactions between authors, editors and reviewers may reduce to some extent the number of reviewers who are available to editors at any point.