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EDITORIAL |
| European Cardiac Surgical Registry (ECSUR) Department of Cardiac Surgery Hammersmith Hospital London, UK |
The aim of this editorial is to appraise a number of relevant aspects of the previous development of other international cardiac surgical registries around the world, to understand the important differences between them, to highlight why each of them functions successfully despite their different approaches, and to use this comparative information to point a way to the future and thus try to deduce how best to establish a similar initiative in Asia.
While membership of the ASCVS is drawn from all over the world, essentially it represents the cardiothoracic surgical interests of 22 Asian countries (there are approximately 1000 cardiothoracic surgical centers in these 22 countries). These countries differ radically in their ability to deliver cardiothoracic services to their populations. Typically, the differences relate to the current financial infrastructure of each country. For example, Singapore has a well-funded healthcare system that effectively meets the national needs for cardiothoracic surgery; indeed, four hospitals have recently received a grant of 6.2 million Singapore dollars as part of a new 3-year government initiative. At 14%, Japan spends one of the world's highest proportions of its gross domestic product (GDP) on healthcare. Like Singapore, there is little unmet need for cardiothoracic surgery in Japan; most patients who need cardiac surgery receive it. However, in Asian countries such as India, Pakistan, Bangladesh, China, Indonesia, Philippines (and many others) only a proportion of potential patients actually receive their surgery. Often, the fundamental reason is financial, and funding is a constraint (as we shall see later) that is vitally important in appraising the choices about how a registry might be established through a network of cardiac surgical centers across Asia.
One way to look at unmet need is to compare the number of surgical centers against the population in each country (Figure 1
). This allows one to contrast the relative national ability or commitment to the provision of adult cardiac surgical services. While government decisions, geographic considerations and the size of units can all affect this ratio in each country, it is revealing that all 15 countries in the European Union (arguably all now with "mature" cardiac surgical services) have chosen to create an environment where there are less than 1.1 million citizens per adult cardiac surgical center. Figure 1 also shows that this ratio is much higher in most of the countries of the former Eastern European block.
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). While the ratio is extremely low in Japan, it is because of the disproportionately large number of Japanese centers (many of whom conduct but a few cardiac operations per year). In contrast, the ratio is very high in China and India (each of which have just over 100 cardiac surgical centers to cover populations straddling 1000 million). There is clearly still an enormous unmet need for cardiac surgical services in countries like China and India, with arguably only about 10% of demand being addressed by the prevailing healthcare infrastructure. The reasons for this discrepancy include accessibility to surgical services in China (both structural and geographic), whilst in India, financial considerations predominate. Readers in other Asian countries may be interested in comparing the provision of cardiac surgical services in their own country using this benchmark. Demographic information of this type has wider implications for choices surrounding the number of cardiac surgical centers in each country. These choices are shared not just by each national government but also by the weight and influence of the opinions and wishes of their local cardiac surgical fraternity, their local national association, and the ASCVS. The information is also important to help nations adjust the number of cardiac and thoracic surgeons under training.
Existing National and International Cardiac Surgical Registries
Adult cardiac surgical registries enjoying 100% acquisition of data from all patients operated in each country have already been established in Belgium, Norway, Israel, Sweden, and Germany. Incomplete, but growing national adult cardiac surgical registries currently exist in Denmark, Holland, UK, Czech Republic, India, Japan, USA, and Canada. In addition, Italy, Ireland, Switzerland, Spain, France, Australia, Malaysia, and Singapore are actively trying to establish their own national adult cardiac registries.
It is important for any national or international registry to encourage all cardiac surgical centers to submit their data. If surgeons prefer their identity to remain confidential, this can be easily accommodated in the infrastructure of the registry, as can the confidentiality of patient identities that can be transferred to the central registry already pre-encrypted. Normally, there are local national data protection laws that must be adhered to, and which typically differ and have to be addressed country by country.
Data from many of the national European cardiac surgical registries have been centralized within the European Cardiac Surgical Registry (ECSUR). A large number of centers worldwide also choose to send their data to ECSUR for analysis. Indeed, there has been an exponential growth in the data received by ECSUR since it launched in autumn 1997. ECSUR now has cardiac surgical patient data from centers in 33 countries, including substantial contributions from centers in a number of Asian countries. We have also compiled a contacts database covering some 1400 cardiothoracic surgical centers and over 4000 cardiac surgeons in 72 countries worldwide. We maintain an active dialogue with them to appraise their case workload and computing capabilities.
In 1998, ECSUR made widely available free software that allowed any center worldwide to collect data according to a predefined minimum adult cardiac surgical dataset. These centers use the software internally to report and log their own activities, and also to send their patient data to ECSUR. This free software is still available from the ECSUR offices. The ECSUR minimum adult cardiac surgical dataset was defined as follows:
The STS national cardiac surgical database has been operational for almost ten years and now covers some 450 centers in the USA and 5 in Canada. For the collection of adult cardiac surgical data, it uses a predefined dataset of over 400 variables. While some of these variables reflect local issues in the US (funding structures etc), one of its main attributes (and also similarly that of the German, UK, and Czech national registries) is that they aim to compile information to enable full risk stratification of patients and the development of predictive risk models to assist their participating surgeons in advising their patients and in improving their surgical practice by benchmarking against national and international norms. Upgrading to a larger dataset that allows full risk stratification and outcome-based risk profiling of patients is an important step for all centers in Asia to take (see next paragraph) and there is a growing body of data being collected in many countries around the world that they can helpfully benchmark their own results against.
Throughout 1999, members of the ECSUR and the STS database management committees have sat on a joint committee, currently chaired by Richard Wyse, and tasked with the objective of producing international datasets for adult cardiac, pediatric cardiac, and thoracic surgery; each unified for worldwide adoption and use. All three datasets will be launched formally at the joint STS/EACTS conference in Florida in January 2000. Since the only suggestion currently coming from within Asia is to establish just an adult cardiac surgical registry, we will confine our remarks in this editorial only to this one of our three areas.
Establishment of an Adult Cardiac Surgical Registry in Asia
Both ECSUR and the STS strongly support the use of the International Adult Cardiac Surgical Dataset for the prospective collection of patient data in all 2500 centers throughout the world. It is specifically designed to meet the wider needs of centers, rather than reflect local national differences. It is also designed to allow the linkage of data between all existing (STS, UK, Belgium, Norway, Sweden, Czech Republic, Germany, minimum ECSUR dataset), and/or future, national registries currently in the planning stage. The International Adult Cardiac Surgical Dataset not only unifies these various national datasets, it also addresses additional needs of many centers outside Western countries, such as valve surgery for rheumatic heart disease. We believe this new dataset will allow better benchmarking for participating centers on both a national and international level, for all demographic and risk stratification, and risk modelling purposes. Like the STS dataset, the International dataset only follows patients until hospital discharge, although a long-term follow-up module is currently being developed. Any number of additional variables can be added locally, according to surgeons' preferences.
For all centers that are able to collect all or most of this dataset, we unhesitatingly commend its use from the year 2000, whether or not a discrete registry is actually established within Asia, or data is sent directly to ECSUR for analysis instead. If centers are currently ill-equipped (in terms of computer technology or available personnel time) then we commend the ECSUR minimum adult cardiac surgical dataset until such time as they can upgrade to the international version. Data between the two systems is directly comparable, so no information will be lost on eventual upgrade. However, the more comprehensive the information sent, the more meaningful to participating surgeons will be the ensuing analysis. The reader is referred to the annual STS national database reports, or the 1998 UK registry report1 for more detailed information about how useful the data analysis is for surgeons themselves and for the cardiothoracic surgical societies, especially in terms of developing and using patient risk stratification and predictive models for CABG and adult valve surgery.
Funding a registry is a major issue and forms two components. First, the registry needs to be funded itself. This is an issue of developing an infrastructure, acquiring appropriate equipment and staff. This topic was much debated in the two relevant sessions at the ASCVS Singapore conference. At ECSUR, our experience in this entire process, building an international registry from scratch, was described in detail earlier this year.2 As with the Belgian and Norwegian registries, ECSUR effectively operates on a low budget and these three groups have shown that it can be done successfully. The STS database, on the other hand, has a totally different funding structure which reflects their heritage of being established in part to protect their members both from criticism and financial erosion from the managed care organizations that fund the surgery. In fact, ECSUR currently operates at an annual budget just 1/60th of that of the STS national database, while the Belgian national adult cardiac surgical registry manages successfully at less than 1/500th.
The other issue is the available funding at the centers themselves and their capacity (infrastructure and available time) to collect patient data regularly and accurately. In our experience, some centers are well funded, well staffed, have sophisticated computer systems, and are well able to collect and transfer either the ECSUR minimum or the International Adult Cardiac Surgery Dataset; most centers will prefer to collect the latter in view of the relevance to them of the ensuing analysis. Other centers, and there are many throughout Asia, have extremely modest, or no computer systems as yet in place to meet their patient database management system requirements. Yet ECSUR has found that most surgeons working in such environments, without computerized records, do still strongly wish to find a way to participate in this major international cardiac surgical registry initiative. For these units we can offer the free software of the ECSUR minimum dataset as a starting point.
Many centers throughout the world have collected the STS dataset for their own local unit purposes. Typically, they use an old STS dataset since that was the operational version they inherited at the time they bought the software that contained it. Unlike the actively participating US centers, almost none of these overseas centers send their data to the STS because of the high expense associated with participation and data analysis, the commitment to maintaining a dedicated data coder (it currently takes 17 minutes for a center to code one patient when using the STS dataset), and the fact that the STS dataset has changed many times since they received their now outdated version, rendering training and retraining difficult or irrelevant. This is an additional reason why ECSUR and the STS have worked jointly on producing a consistent, easy to use, international adult cardiac surgical dataset, and we therefore now commend its use throughout Asia and the rest of the world.
Summary
Registries do not have to be expensive, either for the central organizers, or the centers themselves. The needs of all centers in Asia must be addressed, not just the well-funded. Therefore, a low budget option appears essential to reflect the fact that units across Asia are at different levels of sophistication, proceeding at different speeds, and experience very different funding environments; the ASCVS is aware of these issues. Despite taking a financially modest approach, it will be essential to ensure good data quality control and appropriate data validation to make this initiative work well throughout Asia. In our experience, governments are prepared to pay for information if it is collected accurately; this approach might be the key for funding this initiative for centers in many countries in Asia.
We recommend centers in Asia should collect data according to the new International Adult Cardiac Surgical Dataset, starting early in 2000. This dataset will allow surgeons and centers throughout Asia to benchmark their activities against a number of national and international adult cardiac surgical registries worldwide (including ECSUR and STS) and will permit full risk stratification (and risk modelling) of patient groups, and analysis of outcomes. An alternative for centers who currently want a very simple option, but still wish to participate, would be to use the ECSUR adult cardiac surgical minimum Dataset; free software is available to them for this. However, all significant innovation and surgical improvement is outcome-based and we therefore encourage surgeons currently using the minimum dataset to upgrade to the international dataset as soon as possible.
The development of pediatric cardiac and thoracic surgical registries within Asia is also possible. International datasets have been defined and software is available for both. ECSUR will help ASCVS in this important venture, and will also advise individual centers throughout Asia in establishing and running their database and registry requirements.
References
This article has been cited by other articles:
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  A T. Pezzella Global Expansion of Cardiac Surgery in the New Millennium Asian Cardiovasc Thorac Ann, December 1, 2001; 9(4): 253 - 256. [Full Text] [PDF]
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 A. T. Pezzella Progress in international cardiac surgery: emerging strategies Ann. Thorac. Surg., February 1, 2001; 71(2): 407 - 408. [Full Text] [PDF]
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