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• Response to Marang and Kievit
  David,O.E, Gebhardt
  Published on: 21 November 2003
• Re: Patient organisations should also establish databanks on medical complications
  PJ Marang- van de Mheen
  Published on: 7 October 2003

• Published on: 21 November 2003

  Response to Marang and Kievit

  • David,O.E, Gebhardt, retired biochemist

  Dear Editor

  The comments of Marang and Kievit are interesting, but are they relevant?[1]

  I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.

  1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in cour...

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  Dear Editor

  The comments of Marang and Kievit are interesting, but are they relevant?[1]

  I fear not, or at best only in part. The authors have failed to answer the question, which I raised and its implication. Therefore I will try to do this myself.

  1. Are medical doctors required to present medical information to a judge, if there is a likelihood that the information or evidence can be used in court against the defendant? The answer is no, since no one needs to provide evidence against him or herself.

  2. Where can a judge then find the information he needs, if the defendant remains silent? The answer seems obvious. Both the patient and possibly the patient-organization may have collected data on the average complication frequency in the whole country or/and the specific hospital, where the defendant works. Let me give an example. A number of years ago the Dutch consumer organization, Consumentenbond, reported that some of its members, who were also patients, complained about the high incidence of complications occurring in the department of gynecology in a hospital in the Dutch town of Amersfoort. The medical director of the hospital threatened that he would sue the Consumentenbond if they would not withdraw their complaint. The Consumentenbond, however, did not retract its accusation and an Inspector of Health confirmed the negligence in the department of gynecology. This led to the resignation of the medical director and some of the gynecologists.

  3. Are patients able to determine if a complication has occurred and if so if it is caused by an error or if it has occurred spontaneously? In my opinion this will always remain a difficult matter. But undoubtedly with further experience, the quality of the data, collected by the patient-organization, will improve. Here it should be emphasized, that even for the medically trained staff, it may be difficult to detect a complication and to establish its cause. Finally in malpractice cases the degree in which a complication is the result of an error is, I believe, best left to the judge to decide. He will, in general hear the evidence from specialists representing the plaintiff or the defendant. Occasionally the judge, himself selects a medical expert to help him to establish the cause of the complication.

  Reference

  (1) Marang PJ, Kievit J. Re: Patient organisations should also establish databanks on medical complications [electronic response to Gebhardt DOH; Patient organisations should also establish databanks on medical complications] jmedethics.com 2003http://jme.bmjjournals.com/cgi/eletters/29/2/115#49

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  Conflict of Interest:
  None declared.

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• Published on: 7 October 2003

  Re: Patient organisations should also establish databanks on medical complications

  • PJ Marang- van de Mheen, Epidemiologist
  • Other Contributors:
    • Professor Dr J Kievit, Leiden University Medical Centre

  Dear Editor

  Gebhardt in his brief report pleads for patient organisations to establish databanks on medical complications. Given the references (e.g. to a journalist article by Paans 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 li...

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  Dear Editor

  Gebhardt in his brief report pleads for patient organisations to establish databanks on medical complications. Given the references (e.g. to a journalist article by Paans 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 is often confused. Given the referral of Gebhardt to the journalist article in which the same registry of adverse outcomes is discussed, but with the title referring to errors, both Gebhardt and the journalist think of errors and adverse outcomes to be the same thing. However, an error refers to the process in which something has gone wrong, to a sub-standard performance, regardless of the outcome. It has been explained by others that such a judgement may have a degree of subjectivity.[1] An adverse outcome refers to the outcome which is unwanted, but which not necessarily implies 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. Furthermore, some errors will be missed in this registration, i.e. errors which have not lead to adverse outcomes.

  Secondly, with respect to the confidentiality, this is relevant in particular for the initial years of such a registry in which it is thoroughly tested and the accuracy of the registration may vary widely between participants. Nothing is gained by false-positive signals with respect to high adverse outcome incidences in certain hospitals, except perhaps by flashing headlines in news papers. 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 confidentiality and thorough testing until proven safe. Moreover, a pharmaceutical company will probably be sued if it markets a new drug without proper research. It is intended that after this first period, national adverse outcome data will become available to the public with respect to probabilities on an adverse outcome, given certain types of surgery.

  Finally, what does the patient want? (see Box 1)

  Box 1 Patients need information to make a well informed choice What is a good doctor and what is a good hospital? This simple question is not easy to get answered 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 to find their way in the labyrinth of the health care system. They have experienced many difficulties in getting access to relevant information of 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 will start in September. Patients are not interested in black lists of doctors and malpractices but they prefer good and best practices to make a well informed choice for a doctor or hospital. They need consumer information on objective parameters like the risk on infections in a hospital, the specific skills of a doctor, how many patients with this specific disease a doctor treats a year etc. Patients also like to receive subjective information on a specific hospital or doctor: how is the communication between a doctor and his patients, does the team give enough information and support when needed etc. This experience based information is often available among patients organisations. The NPCF has chosen to work together with organisations of health care providers and insurance companies to use parts of their databanks as a basis for consumer information. A task of the NPCF is to translate the data to 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 Iris van Bennekom, Director NPCF

  International research has shown that patients do not use public information on performance of hospitals or doctors for their choice of treatment or hospital, among other because they do not understand and do not trust these data. This also applies to adverse outcome data. For the interpretation of hospital specific adverse outcome incidences it is vital to know the context, since e.g. older, sicker and more complex patients have higher probabilities on adverse outcomes.[2] It is therefore vital that a reliable registry is established that 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) collaborate with respect to the national surgical adverse outcome registry, in particular to produce information that is relevant for patients with respect to treatment and hospital choices. Supported by international literature, the NPCF holds the view that patients are not primarily interested in adverse outcome data, since patients are aware that they need the context to be able to interpret these data. Patients are more interested in experience of doctors or hospitals to treat certain disease or to perform certain operations, since they want the question answered ‘What is the best place to go for this type of problem?’. That this doctor or hospital will probably have a high adverse outcome record is not relevant, since it may well be explained by the complex patients that are referred to more experienced doctors. As argued in a previous paper,[3] it is essential that there is an increased and mutual trust between the medical profession and patients’ organisation, 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”.

  Dr PJ Marang- van de Mheen
  Epidemiologist
  Association of Surgeons in the Netherlands

  Professor Dr J Kievit
  Surgeon and Head of Department of Medical Decision Making
  Leiden University Medical Centre

  References

  (1) Hayward RA, Hofer TP. Estimating hospital deaths due to medical errors: preventability is in the eye of the reviewer. JAMA 2001;286(4):415-420.

  (2) Kievit J. Regarding covering-up: a database for registration of adverse outcomes (in Dutch). Med Contact 2001;56(48):1777-1779.

  (3) Marshall MN, Shekelle PG, Leatherman S, Brook RH. The public release of performance data. What do we expect to gain? A review of the evidence. JAMA 2000;283:1866-74.

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  Conflict of Interest:
  None declared.

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