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Response to “Patient organisations should also establish databanks on medical complications”
  1. P J Marang-van de Mheen1,
  2. J Kievit2
  1. 1Association of Surgeons in the Netherlands, the Netherlands
  2. 2Department of Medical Decision Making, Leiden University Medical Centre, Leiden, the Netherlands
  1. Correspondence to:
 Dr P J Marang-van de Mheen
 Association of Surgeons in the Netherlands;

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Gebhardt in his brief report1 pleads for patient organisations to establish databanks on medical complications. Given the references (for example, an article by Paans, a journalist, entitled “Medical errors to be kept secret”) and the lack of argumentation, there is substantial danger of misinterpretation of the current situation, which in turn may frustrate the process of increased transparency. We would therefore like to respond to this by giving background information and reasons for some of the choices that were made with respect to the registry of complications mentioned by Gebhardt.

First, a distinction needs to be made between an error and an adverse outcome, which are often confused. From Gebhardt’s reference to the journalist’s article which discusses the same registry of adverse outcomes, but with the title referring to errors, both Gebhardt and the journalist think errors and adverse outcomes are the same thing. However, an error refers to the process in which something has gone wrong, a substandard performance, regardless of the outcome. It has been explained by others that such a judgement may have a degree of subjectivity.2 An adverse outcome refers to the outcome which is unwanted but does not necessarily imply that an error has been made. This is why the term “adverse outcomes” is used rather than the term “complications”, since the latter term is often confused with an error being made. The registration of medical complications that Gebhardt refers to is a registration of surgical adverse outcomes guided by an unambiguous definition of the term “adverse outcome”, of which only a small percentage is related to errors.3 Furthermore, some errors will be missed in this registration—that is, errors which have not led to adverse outcomes.

Secondly, with respect to confidentiality, this is relevant in particular for the initial years of such a registry during which it is thoroughly tested and accuracy of the registration may vary widely between participants. Nothing is gained by false positive signals with respect to the high incidence of adverse outcomes in some hospitals, except perhaps by flashing headlines in newspapers. In this respect one may compare the development of such a national registry to the development of a new drug, in which case no one argues about confidentiality and thorough testing until proved safe. Moreover, a pharmaceutical company will probably be sued if it markets a new drug without proper research. It is intended that after this initial period, national adverse outcome data will become available to the public with respect to probability of an adverse outcome given certain types of surgery.

Finally, what does the patient want? (see box 1). International research has shown that patients do not use public information on performance of hospitals or doctors for making a choice of treatment or hospital because, among other reasons, they do not understand and do not trust these data.4 This also applies to adverse outcomes data. For interpreting the incidence of hospital specific adverse outcomes it is important to know the context—for example, since older, sicker, and more complex patients have higher probabilities of adverse outcomes.3 It is therefore vital to establish a reliable registry which can be trusted and understood both by medical professionals and the public. For this reason, the Association of Surgeons of the Netherlands and the Dutch Federation of Patients and Consumer Organisations (NPCF) are collaborating with respect to the national surgical adverse outcome registry, in particular, to produce information that is relevant for patients about treatment and hospital choices. Supported by the international literature, the NPCF holds the view that patients are not primarily interested in data on adverse outcomes, since they are aware that these data need to be interpreted in the right context. Patients are more interested in the experience of doctors or hospitals to treat certain diseases or to perform certain operations, since the question they want answered is “What is the best place to go to for this type of problem?”. That this doctor or hospital probably has a high adverse outcome record is not relevant, since this may well be explained by the complex patients who are referred to more experienced doctors. As argued in a previous paper,3 it is essential that there is an increased mutual trust between the medical profession and patients’ organisations that supports a combined effort to improve the quality and availability of patient information. Such initiatives will benefit both patients and doctors and are too important to be frustrated by references to “powers that must be kept under control”.

Box 1: Patients need information to make a well informed choice

Who is a good doctor and what is a good hospital? This simple question is not easy to answer for individual patients who need a good diagnosis and the best treatment. The NPCF (Dutch Federation of Patients and Consumer Organisations) and its member organisations have published several consumer guides for specific diseases to help patients find their way in the labyrinth of the healthcare system. Patients experience many difficulties in getting access to relevant information from doctors’ organisations and insurance companies. Therefore the NPCF wants to cooperate with these organisations to create consumer information based on the important and relevant data that are available. A joint project for a databank on best practices started in September 2003.

Patients are not interested in black lists of doctors and malpractices, they prefer to know about good and best practices to make a well informed choice for a doctor or hospital. They need consumer information on objective measures such as the risk of infection in a hospital, the specific skills of a doctor, how many patients with this specific disease a doctor treats a year, etc. Patients would also like to receive subjective information on a specific hospital or doctor: How is the communication between a doctor and his or her patients? Does the team give enough information and support when needed?, etc. This experience based information is often available from patient organisations.

The NPCF has chosen to work together with organisations of healthcare providers and insurance companies to use parts of their databanks as a basis for consumer information. One task of the NPCF is to translate the data into consumer information that meets the needs of the patients, based on research and experiences of patients.

Joint efforts are needed to make this important information accessible for doctors and patients.

Dr I van Bennekom, Director, NPCF