... striving to improve transparency in health care ...
Project Organisers: the Verbraucher-Zentrale in Hamburg, in parts together with other german and european partners

What Does PatientNavigation Want?

Demand for information is growing. Patients not only want to understand the structure of the health care system, they want to be able to compare the quality of services. Without information on quality evaluation, patients are unable to make empowered, responsible decisions on their own behalf, become independent actors in their own interests and share responsibility for their treatment choices. They will experience the support by their "pilots" (general practitioners, insurance providers and patient counsellors) as benevolent paternalism, an outside determination that (in the best case) has their own interests at heart. 

Patients do not just want information on illnesses, they want data on institutions. Contrary to a common preconception, they are not usually interested in finding the "best doctor" or "best hospital", but rather want to find out which institution is best suited to their particular situational needs. This decision is determined not only by medical considerations, but also by social, ethical or simply practical circumstances varying individually. 

PatientNavigation is intended to provide support to patients and their counsellors in finding their way through the tangled web of the health care system. It is not designed as a pilot, guiding and deciding, but as a compass that provides information but leaves the decision with the person concerned.

The "Information Pie Chart"

The information that is relevant to patients can be divided into two groups:
  • information on diseases and treatment and
  • information on the health care system and particularly on the quality of services on offer.
PatientNavigation concentrates on the second category, the upper half of our information pie chart





Structural data are easily accessible. They can be taken from phone books or obtained from commercial information providers either through telephone hotlines or the internet. They are usually limited to very basic information. Even medical associations provide only the bare facts, though their data are usually complete. Increasingly, data on such things as languages spoken or wheelchair access are also included.

Data provided by the institutions, certifications and quality seals can play an important role in choosing a health care provider. However, it is as yet difficult to separate information from advertising. As certificates become increasingly common in health care, informing patients about their content and meaning becomes more and more important. Most importantly, patients need to be told not only that a given hospital received a KTQ or TÜV seal, but what for. Quality criteria need to be publicly accessible.

Performance data are at the heart of the data pool. This category includes e.g. demographic structure (indication e.g. specialisation on geriatric medicine), the average length of stay, the frequency of a specific treatment, the relation of invasive to conservative treatment, and 
mortality rates; in a nutshell, diagnoses and treatment methods, specialisation on certain diseases and information on follow-up treatment provided. 

The last slice of our information pie chart represents data reflecting the patients' perspective, usually gained through surveys and unsystematic feedback.
Patient surveys run the risk of merely collecting opinions. They must be designed to establish facts which can then be related to standards for medical treatment, information policy and the general treatment of patients. This renders them useful even for areas that are not easily judged by the patient. 
The experience of patient self-help groups and associations is widely available, but has yet to be systematically collected and evaluated. They represent a wealth of diagnosis-specific empirical knowledge that can be generalised and used, at least for a given disease. 
Data generated by complaint management are important indicators of both problems and potential for change. If verifiable, they can also serve to identify the black sheep of the medical profession.

The EU-Funded Transparency Project

From 1 June 2000 to 30 October 2001 we ran a project in cooperation with the Verbraucher-Zentrale Schleswig Holstein (Kiel), the Medizinischer Dienst der Krankenversicherung (Lubeck), and other partners in several EU-countries. It was funded by the EU Commission (Department of Health and Consumer Protection) and aimed to allow efforts to achieve transparency in individual countries to access and profit from experience made elsewhere by collecting and comparing information on such efforts elsewhere -- not least, 
to help develop reliable quality evaluation in Germany. 

We focussed on the following question:

  • In which (not only) European countries do patients have access to data on health care services and, most importantly, their quality?
  • Who provides this information, and in whose interest do they act?
  • How is the information generated, how is quality measured and judged, and how are the data evaluated?
  • How are patients involved in the evaluation process?
  • How are the sources and evaluation criteria of the information made transparent to the consumer?

Our Focus

We chose to focus on two fields in our project: the transparency of hospital performance data and the contribution of complaint management to performance and quality transparency.

We approached these questions by research in various European countries and the systematic comparison of the results with regard to patient-oriented quality transparency.

The Final Report

We finished compiling our final report by the end of 2001.
  • Volumes 1 and 2 are already available in German, Volume 1 also in English, Volume 2 is to follow shortly. 
  • Volume 3 is to be published in book form (in German: Mabuse Verlag, Frankfurt am Main).

Contact Us

Verbraucher-Zentrale Hamburg
Kirchenallee 22 
D-20099 Hamburg 
Fon: +49 40 24832 0
Fax: +49 40 24832 290

Christoph Kranich 
Fon: +49 40 24832 132 
eMail: kranich@vzhh.de

Dr. med. Karl D. Vitt
An der Untertrave 47
D-23552 Lübeck
Fon: +49 451 6130451
Fax: +49 451 6130709
eMail: karlvitt@yahoo.de
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