Proposal for a European Public Health Research Infrastructure for Sharing of health and Medical administrative data (PHRIMA).

In Europe, health and medical administrative data is increasingly accumulating on a national level. Looking further than re-use of this data on a national level, sharing health and medical administrative data would enable large-scale analyses and European-level public health projects. There is currently no research infrastructure for this type of sharing. The PHRIMA consortium proposes to realise the Public Health Research Infrastructure for Sharing of health and Medical Administrative data (PHRIMA) which will enable and facilitate the efficient and secure sharing of healthcare data.

Stage at diagnosis and colorectal cancer survival in six high-income countries: a population-based study of patients diagnosed during 2000-2007.

BACKGROUND: Large international differences in colorectal cancer survival exist, even between countries with similar healthcare. We investigate the extent to which stage at diagnosis explains these differences. METHODS: Data from population-based cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK were analysed for 313 852 patients diagnosed with colon or rectal cancer during 2000-2007. We compared the distributions of stage at diagnosis. We estimated both stage-specific net survival and the excess hazard of death up to three years after diagnosis, using flexible parametric models on the log-cumulative excess hazard scale. RESULTS: International differences in colon and rectal cancer stage distributions were wide: Denmark showed a distribution skewed towards later-stage disease, while Australia, Norway and the UK showed high proportions of 'regional' disease. One-year colon cancer survival was 67% in the UK and ranged between 71% (Denmark) and 80% (Australia and Sweden) elsewhere. For rectal cancer, one-year survival was also low in the UK (75%), compared to 79% in Denmark and 82-84% elsewhere. International survival differences were also evident for each stage of disease, with the UK showing consistently lowest survival at one and three years. CONCLUSION: Differences in stage at diagnosis partly explain international differences in colorectal cancer survival, with a more adverse stage distribution contributing to comparatively low survival in Denmark. Differences in stage distribution could arise because of differences in diagnostic delay and awareness of symptoms, or in the thoroughness of staging procedures. Nevertheless, survival differences also exist for each stage of disease, suggesting unequal access to optimal treatment, particularly in the UK.

Lung cancer survival and stage at diagnosis in Australia, Canada, Denmark, Norway, Sweden and the UK: a population-based study, 2004-2007.

BACKGROUND: The authors consider whether differences in stage at diagnosis could explain the variation in lung cancer survival between six developed countries in 2004-2007. METHODS: Routinely collected population-based data were obtained on all adults (15-99 years) diagnosed with lung cancer in 2004-2007 and registered in regional and national cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK. Stage data for 57 352 patients were consolidated from various classification systems. Flexible parametric hazard models on the log cumulative scale were used to estimate net survival at 1 year and the excess hazard up to 18 months after diagnosis. RESULTS: Age-standardised 1-year net survival from non-small cell lung cancer ranged from 30% (UK) to 46% (Sweden). Patients in the UK and Denmark had lower survival than elsewhere, partly because of a more adverse stage distribution. However, there were also wide international differences in stage-specific survival. Net survival from TNM stage I non-small cell lung cancer was 16% lower in the UK than in Sweden, and for TNM stage IV disease survival was 10% lower. Similar patterns were found for small cell lung cancer. CONCLUSIONS: There are comparability issues when using population-based data but, even given these constraints, this study shows that, while differences in stage at diagnosis explain some of the international variation in overall lung cancer survival, wide disparities in stage-specific survival exist, suggesting that other factors are also important such as differences in treatment. Stage should be included in international cancer survival studies and the comparability of population-based data should be improved.

Stage at diagnosis and ovarian cancer survival: evidence from the International Cancer Benchmarking Partnership.

OBJECTIVE: We investigate what role stage at diagnosis bears in international differences in ovarian cancer survival. METHODS: Data from population-based cancer registries in Australia, Canada, Denmark, Norway, and the UK were analysed for 20,073 women diagnosed with ovarian cancer during 2004-07. We compare the stage distribution between countries and estimate stage-specific one-year net survival and the excess hazard up to 18 months after diagnosis, using flexible parametric models on the log cumulative excess hazard scale. RESULTS: One-year survival was 69% in the UK, 72% in Denmark and 74-75% elsewhere. In Denmark, 74% of patients were diagnosed with FIGO stages III-IV disease, compared to 60-70% elsewhere. International differences in survival were evident at each stage of disease; women in the UK had lower survival than in the other four countries for patients with FIGO stages III-IV disease (61.4% vs. 65.8-74.4%). International differences were widest for older women and for those with advanced stage or with no stage data. CONCLUSION: Differences in stage at diagnosis partly explain international variation in ovarian cancer survival, and a more adverse stage distribution contributes to comparatively low survival in Denmark. This could arise because of differences in tumour biology, staging procedures or diagnostic delay. Differences in survival also exist within each stage, as illustrated by lower survival for advanced disease in the UK, suggesting unequal access to optimal treatment. Population-based data on cancer survival by stage are vital for cancer surveillance, and global consensus is needed to make stage data in cancer registries more consistent.

NORDCAN--a Nordic tool for cancer information, planning, quality control and research.

UNLABELLED: The NORDCAN database and program ( www.ancr.nu ) include detailed information and results on cancer incidence, mortality and prevalence in each of the Nordic countries over five decades and has lately been supplemented with predictions of cancer incidence and mortality; future extensions include the incorporation of cancer survival estimates. MATERIAL AND METHODS: The data originates from the national cancer registries and causes of death registries in Denmark, Finland, Iceland, Norway, Sweden, and Faroe Islands and is regularly updated. Presently 41 cancer entities are included in the common dataset, and conversions of the original national data according to international rules ensure comparability. RESULTS: With 25 million inhabitants in the Nordic countries, 130 000 incident cancers are reported yearly, alongside nearly 60 000 cancer deaths, with almost a million persons living with a cancer diagnosis. This web-based application is available in English and in each of the five Nordic national languages. It includes comprehensive and easy-to-use descriptive epidemiology tools that provide tabulations and graphs, with further user-specified options available. DISCUSSION: The NORDCAN database aims to provide comparable and timely data to serve the varying needs of policy makers, cancer societies, the public, and journalists, as well as the clinical and research community.