Europe’s first and only, truly global, spine registry

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Haluk Berk, Turkey, introduced the idea of Spine Tango at the annual conference in Vienna. He said, “Our main tasks are research and related topics and for that, we need data collection and quality control of what we do in our profession. We also need a relationship with the new products released and their effect on quality of healthcare

Berk mentioned that the idea of a registry came up in the early 90s. To successfully transform the idea into reality took over 15 years. “From the name, you can imagine that the registry allows us to tango with the patients, tango with our colleagues to see where we are in order to successfully perform benchmarking and identify which treatments produced are giving the best results to our patients. Spine Tango allows us to always have the possibility to go back and look at how good or how bad we are, so that we can change what we are doing, if needed,” he said.

Berk added that with healthcare expenditures increasing year on year, policies depend on solid evidence, based on real practice. “This registry is truly international and covers more than 30,000 entries with about 20,000 follow-up patients and many centres. Within these entries and national modules, there are surgical cases and now newly implemented conservative non-surgical treatments can also be entered and pooled in the same database,” he explained.

 

Berk announced that the database had already generated scientific work, as over 10 peer-reviewed articles have been published using this system

 

Ciaran Bolger, Ireland, clarified that Spine Tango allowed people to look at their own results, and then compare them with those of their colleagues’ across Europe. This information is useful for self-evaluation of your methods. So it is also a self-reference tool as well as data collection,” he said.

 

Max Aebi, Switzerland, said: “We are aware of this problem and have worked out behaviour codes for participation. There are different levels of participation. If certain institutions want to have a certain level of participation with accreditation as an institution, then they must deliver at least 90% of their data.”

Aebi emphasised that there will be auditing of the data, and that the system is an electronic web-based one with quite a few validation criteria included to control for complete and meaningful data.

 

“This is an ongoing process, and we are trying to make this data more and more appropriate in order to use it both for research and for strategic discussions with healthcare institutions, with insurance companies and governments. This is our focus at the moment and for that we need to have good data,” he said.

Bolger also explained that Spine Tango collects prospective data. “This is different from some registries where you only put in your post-operative outcome data. Insitutes are putting in their pre-operative data.So you put in data on a patient before surgery, and then if no data appears afterwards, that tells you something .”

Rune Hedlund, Gothenburg, Sweden spoke to Spinal News International on the importance of registries in general.

What is the importance of registries?

 

Registries, I think, are important on an overall level to assess medical technologies and how they are used in general. Like nationwide registries showing the overall effect of procedures. On the other hand, they are not very efficient in showing slight differences between different treatment regimens because if you want to do that, you need to have very comparable groups of similar patients and compare them in a prospective way with a high follow-up rate. The follow-up rate is, I think, the general problem. With the registries, you do have high follow up rates very early but if you go two years down the line, which is usually the standard of the scientific research today, the follow up rates go down quite a bit. So, yes, registries are important and I think they are here to stay. They teach us something about the general effect of what we are doing but it has to be combined with randomised prospective studies and also observational studies to add to this knowledge—we need them all.

 

The comment that came from a member of the audience who said that people feed into the registries only what they want, would you say this is true?

 

It is a controversial issue. From registries, it is difficult to know how many of each surgeon’s patients data is actually put into the registers. Do you put in your failures? Maybe you have a tendency not to do that and how do you control for that? It is a difficult issue and I do not think there is any clear answer to it. You can control for it. In some places like in Sweden where we have been using registries for a long time, and you can control for that a little bit by putting all of our patients in to the registries but it is a control mechanism that is a little bit difficult to establish in many places.

 

What about your thoughts on reporting complications?

 

t is certainly a problem that as surgeons, or hard working individuals, we hate complications. We suffer, not as much as the patient, but psychologically when we encounter complications and I am sure that in all areas of medicine, and surgery as well, there is an underreporting of complications. We know that, for instance, when you introduce a technology, often the first reports are very positive, then after five years, the complications start to turn up, because in the long- term, the truth always surfaces…

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