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After 2.5 years of deliberation, the European Parliament and Council have recently adopted the Directive on patients’ rights in cross-border health care. As the first harmonization Directive concerning health care, this may be regarded as a legislative milestone for the European Union. In broad terms, the Directive concerns the following three topics: the ‘old’ patients’ rights that codify the case law of the Court on reimbursement of cross-border health care; ‘new’ patients’ rights that concern transparency and accountability; and enhanced cooperation between the Member States. In this contribution, we will focus on the new patients’ rights, in particular those concerning transparency. In the Directive as adopted in February 2010: Article 4 (1) provides that national contact points shall provide information on the applicable national standards and guidelines with regard to quality and safety and Community standards with regard to safety. Article 4 (2)b states that health-care providers shall provide ‘relevant information’ to help patients make ‘an informed choice on treatment options, on the availability, quality and safety of the health care they provide in the Member State of treatment, clear invoices and clear information on prices’, as well as in relation to the status of the health-care provider and information pertinent to liability. Article 4 (2)b also states that where this information is already provided to patients resident in the Member State of treatment, the Directive does not require more extensive information to be provided. In addition, Article 6 provides more detail on the national contact points who provide primarily procedural information concerning the right to reimbursement. Hence, the information to be provided by the contact points is different from that to be provided by the health-care providers, which is about content. The Directive raises a number of questions. For example, what is ‘relevant information’ and who decides about that? As regards relevant information, cutting to the chase, in this context the main issue would appear to be whether quality (as well as availability and safety) information will have to be made available by the individual health-care providers in a format that will make it comparable between Member States. To do so would be something like reaching for the holy grail of consumer choice for health care in the European Union. If this view is taken, a number of issues are unresolved: presumably, the information would at a minimum have to be comparable but not actually presented as part of a comparison with other providers in the Member State of treatment or elsewhere. This raises the questions of what kind of standards would be needed to make information enabling choice comparable and who would set these standards? Or could there be competing standards allowing some degree of comparison either nationally or between (sets of) Member States? The Directive provides no mechanism for this. In many Member States, programmes have been implemented to define, measure and publish quality indicators on the Internet in order to facilitate patient choice. Patient choice web sites have been reviewed by Damman et al.1 They looked at web sites from several European countries, including Denmark, England, Germany, Ireland, the Netherlands, Norway and Sweden.2 In France too, there is a web site on which consumers can compare hospitals with respect to practical and quality information (http://www.platines.sante.gouv.fr/). Damman et al. conclude that a wide variety of presentation formats are being used on these web sites. Web sites also differ with respect to the type of information presented. Most of the web site are about hospitals. Only a minority offers information on nursing homes and/or home care. What does this imply for the obligation of Member States to provide information? Is it enough to provide information about hospital care? Is it enough to provide information based on performance indicators? Or should information on patient experiences also be included? In other words, what is enough relevant information provided nationally to be excused from providing it specifically to patients from other Member States, and to what extent (if any) should information that is specific to patients from other Member States be provided? Article 4 (2) suggests that it need not be—but on the other hand the suggestion that this only applies if adequate information is available nationally means that especially information enabling choice on treatment options’ availability and on quality must exist, and must be accessible in terms of the language used and by electronic means. Even non-discriminatory treatment (which includes not treating unalike cases as like) would seem to require some additional effort (e.g. a price list posted at the hospital entrance and not otherwise accessible would not suffice). Moreover, this apparent restriction instead implies a major expansion: extending the right to information needed to inform choice to all citizens of the different Member States, even when they are not exercising their rights to consume cross-border health care. The interaction between the two halves of Article 4 (2)b is therefore not just that they are corresponding vessels—in that if limited information is available nationally more must be provided for border crossing patients and vice versa, if ample information is provided nationally less is required for patients from abroad—but that a comparable level of comparable information must presumably be provided, as a result, to both kinds of patients. In other words, this Directive may eventually have much more impact on national policies than on cross-border consumption of care. It will trigger national governments to initiate the measurement and publication of quality of care indicators, if they have not done so already. More importantly, these quality indicators have to be relevant for consumer choice. This would be good news from the perspective of consumer choice and patient empowerment. However, we should not have too high expectations about the effect of transparency on consumer behaviour. A review of the literature, conducted by Faber et al.3, indicates that currently less than 5% of the consumers uses comparative information for choosing a health-care provider. Processing consumer information about health-care choices is difficult and it requires a certain level of health literacy and cognitive competencies.1 Apart from that, a major challenge for policymakers and for the research community lies in defining what is relevant and what constitutes useful information. Consumers define quality of care differently than professionals define it. Consumers view quality in terms of access, costs, having a choice of doctors, having doctors who spend enough time with them and doctor qualifications.4 Often this is not the type of information that is actually provided to consumers. The web sites that have recently been reviewed by Damman et al.2 presented quality information based on performance indicators (defined by professionals) and they provide practical information on providers’ characteristics and services. However, information about patient experiences—for instance on the amount of time that doctors spend with them—is only presented on little more than half of the web sites. In order to improve consumer information and its utilization, Hibbard et al.4 call for the construction of a framework for communicating about quality. Such a framework would help consumers to understand what quality is and would give them a short list of what they should consider when choosing a hospital or a physician. More specifically, Hibbard et al. argue that all consumer reports should use the same quality framework for describing quality and for reporting categories. While this is probably sound advice from a scientific point of view, the feasibility of using such a common language on consumer web sites throughout Europe is questionable. Considering the time it has taken to introduce something relatively simple like one European emergency number (112) and taking into account that in many Member States other emergency numbers continue to exist alongside 112, we are probably still a very long way from harmonizing consumer web sites about the quality of care. Nevertheless, the Directive is an important step in the right direction.
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