The electronic health card: the patient’s view

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K. Jähn, M. Reiher, E. Nagel Working Group e-Health and Health Communication Institute for Medical Care Management and Health Sciences University of Bayreuth

Inhaltsverzeichnis

Abstract:

The social and medico-ethical implications of the planned introduction of electronic health cards, as well as the actual widening of their telematic scope, are controversial subjects in Germany. The authors are of the view that from the patient’s perspective the initial functions envisaged, especially what is seen as the obligatory aspect of the electronic card, will not radically alter the situation in as much as the patient, even more so than before, will control access to his or her data. Nonetheless the benefits of the voluntary components of the electronic card should be evaluated as soon as possible in the light of possible reservations on the part of patients and doctors alike. Especially in respect of functions planned for the mid-term, these benefits could be linked to further e-health applications. The comparatively slow growth of the telematic infrastructure in the German health service will be accompanied not only by considerable benefits but also by the risk of abuse. The special key role a mature electonic health card will play in the subsequent growth of its network is evident not only in areas such as ‘electronic prescription’, ‘electronic patient records’, ‘home monitoring’ or ‘patient empowerment’. It could also help the interested patient to gain for the first time a comprehensive, life-long insight into the nature of the medical documentation relating to his or her person, making it possible to engage on one’s own initiative with the potential problems associated with increased transparency in the health service. In this sense we should be discussing not only the ‘shared decision making’ advocated in many sectors for tomorrow’s doctor-patient relationship but also aspects of ‘shared responsibility’. (Klinik und Forschung 2005;11:22-25)

Introduction

On a European scale and measured against the latest technological advances, the development of card systems in the German health service has been dilatory. The health insurance card (KVK) brought in under the 01.01.1995 Structural Health Law did achieve international recognition. However, the potential to store additional patient data remained on ice in view of data protection concerns with the result that the practical applications were necessarily confined to merely passing on administrative data.1-6 In the ensuing years what had once been Germany’s pioneering role in the development of the health card system had to be abandoned.7-14 Against this background, at the introductory pilot-stage of the electronic health card (e-Gesundheitskarte, eGK) it is imperative that the question of data protection is raised in time, giving due prominance to the patient’s sole right of access to his or her records, as required by the legislators. In this context it should be stressed that the singular importance of the e-card lies less in its role of data-carrier than in its function as a key to such additional uses – already taking shape or at least technologically feasible – as have the ability to generate far more value on the side of doctors and patients. Here too lie the conceptual fundaments for incentive programmes that should already form part of enlightenment campaigns, so that all hoped-for potential in the practical shaping of the e-health card can be utilised in the health service as well.15,16

Structuring the electronic health card (eGK)

In January 2005 the legal base for launching an electronic health card was constituted.17 From the outset the contrast with the superseded card lies in the optimisation of storage capacity and enhanced security.9,18 The basic concept of the eGK incorporates an ‘obligatory part’ for administrative content and function which applies equally to all users, whereas use of the so-called ‘voluntary part’ for additional patient-related data is entirely optional (Tab.1).19

The obligatory side from the patient’s perspective

Generally speaking it can be said that from the patient’s perspective the introduction of the eGK in its application only to the obligatory part does not change anything very much.20 Augmenting the previous administrative insurance data with a photograph, as well as adding details of sex and supplementary payment status21, do not in themselves suggest a notable advance. Even the introduction of electronic prescriptions22, while certainly facilitating pharmacists and health insurance companies, will at best enhance for the patient the accuracy of prescriptive documentation. It should be noted as well that the seamless digital mediation of the prescription, right through to its presentation in the pharmacy, represents an essential prerequisite for patient-centred pharmacological paperwork.15 The automated supplementary payment documentation could be seen as a further gain since now proof of possible overpayments can be entered digitally on the eGK. From an economic viewpoint electronic prescriptions could be of interest in the context of short-term savings potential – for the insured the frequency of drug prescriptions will be the clearest sign of progress in relation to the eGK. The combination of the European Health Insurance Card (EHIC) with the eGK supersedes the hitherto applied European formulas for settling the cost of cross-border medical services provided (E111) and will facilitate, depending on the results of initial pilot projects in certain regions of France and Italy, health provision beyond national borders.23 The average two-year delay in settling patients’ claims should thus become a thing of the past.5,24 All in all, the measures introduced with a cross-border health card will favour the increasing mobility of European citizens, travelling on business or as tourists, through the countries of the European Union (EU), the European Economic Area (EEA) or Switzerland.25,26

Optional part

Only the realisation of the envisaged applications of the optional part of the eGK will bring with it innovations that patients will associate with positive but also negative factors. Thus the provision of comprehensive health-centred data, especially critical data (eg blood group, allergies), on the e-card will make emergency aid more effective, contributing to patient welfare in a way that is easily understood.34,35 It should be stated here that only the emergency doctor will presume to have the right to be privy to parts of the eGK without the express permission of the patient.

The eGK with its envisaged referral functions will facilitate the virtual collation of local data stored on it with arbitrary decentral applications. This will range from the linkage of pharmacological documentation with drug information systems to avoid undesirable interactions right through to the collation of decentrally stored health data on various servers. In the view of the Federal Ministry for Health and Social Security (BMGS), one day a server could be interposed who – in the context of differentiated access channels agreed with the patient – could key into data stored by medical health care and other service providers. Eventually such a data pool could be at the patient’s life-long disposal, thus providing information on the patient’s entire medical history independent of time and place.27-33,36,37 At this level the Master Patient Index (MPI) provided by the eGK offers not only secure authentication for central electronic patient records – held, for instance, by a hospital supply company – but represents, presupposing standardised referral functions, the main building block of future decentral patient records with the possibility of access to differentiated data banks. The patient can decide what information should be released from his or her entire records and thus reinforce self-responsibility for health and well-being.36 This is contingent not only on ‘possession of the key’ but also on the patient’s ubiquitous access to his or her medical records, independent of the presence of a service provider. This amounts to a call on politicians and care providers to devise structures allowing patient access at all times to personal records. If access is allowed only – if at all – at the locations of service providers, the patient is hardly going to invoke soverign rights. Although the eGK affords the patient for the very first time an insight into the documentary system controlling personal medical records, it is possible that the eGK would more likely arouse fears about being a ‘transparent patient’ which could well be harboured today in the light of current events. The provision of smart card readers, thus possibly authenticating access via the telematic network to relevant data would be the logical measure to take against data abuse by third parties, forming the bedrock of future dissemination of eGK applications, greatly stimulating acceptance of the smart card: an electronic reader in the patient’s hand would be a first tangible connection to his or her data. The Master Patient Index (MPI), developed in tandem with the electronic signature, would open the way to hand-operated cryptographic procedures which would be the sine qua non of any sizeable expansion of existing methods: from Home Monitoring applications via Consumer Health Informatics Systems (CHIS) right through to applications extending beyond the mere provision of health care, which in their totality could also be termed e-health records.15, 38

Acceptance

The eGK will only be successful if it is not only accepted by a large proportion of the population and service providers but is understood to make a positive contribution to health care.16 Right now, despite considerable media coverage, the impression is given that the eGK is purely the result of the demand for reorganisation, optimisation and economies in the health service, with rather a subservient role for patients and service providers.20,39 It is important to counteract this perception in the immediate future by illuminating the hidden – because effective only in the medium to long term – advantages of the eGK. In particular, the citizen’s focus should be directed to the potential inherent in the optional part of the card, always emphasising the individual’s role in realising the smartcard’s advantages. Only the holder of the eGK can decide which functions should be employed and which people have access to the data. The patient can thus more autonomously than before command access to the data and play a more interactive role in the management of the health service.40 Technical security measures, as well as legal and ethical concerns must be as transparent in the public eye as the advantages for the patient of greater security and a better quality of care.9,36,41-43 Only the comprehensibly informed patient can undertake an across-the-board evaluation of the eGK and on this basis make a decision for or against the smartcard’s optional functions. Service providers too with their great motivational and directive powers play an essential part in persuading patients to accept the eGK.40 Incentives should be built in to make the optional functions of the eGK more attractive. A study of acceptance scenarios and telematic financing models in the health service suggests a system of transaction-based remuneration for extra outlay and additional services that could be recouped in a year. On this reckoning the extra outlay on electronic documentation is rated 5.10 €, an electronic doctor’s letter 0.5 €. Pharmacies should receive just 5 € per patient for electronic documentation.45 Economic incentives on the part of service providers are undoubtedly important. Whether they can solve the acceptance problem is another matter, for on the providers’ side too the eGK will only be accepted if it is seen to provide an immediate and tangible advantage. A doctor using monetary incentives may well take the initial extra outlay on electronic documentation on himself but if he fails to integrate – in his own interest, as well – the evolving aspects of e-patient records into the workflow of his practice, the efforts to improve the quality of documentary service will lag far behind the achieveable goals.46

The electronic Health Card (eGK) as Motor for e-Health

In the medium and long term the eGK will be a motivating force for new commercial fields of activity, e-health service provision and innovative sytems. Its introduction is the first essential step taken by the Federal Ministry for Health and Social Security (BMGS) and other institutions [eg Action Forum Telematics (ATG)] to create a telematics core architecture. With the possibility of secure patient authentication, combined with Health Professional Cards, and the widest possible dissemination of electronic reading hardware, the way is clear not only to integrate information and communication technologies consistently and without media bridges into regular provision but also to give digital stimulus to other services linked to health. Together with the accelerated standardisation of technological norms, the individual solutions implemented up to now will reach a higher level of interoperability. Consequently, patients and providers can choose from a better coordinated range of ‘actual’ and ‘purely digital’ services which by virtue of their functioning in coordination with each other will represent considerable added value compared with what had been hitherto available. Thus the market for e-health services will be considerably larger both for producers and consumers. Innovative potential will be realised faster, making it easier to enlarge the health service network. With the introduction of the eGK the laws governing doctors’ professional ethics will, over time, undergo a change in the context of the telematics of the German health service. Confidentiality and data protection jointly protect the patient’s autonomy over his or her records.60 In accordance with §4 BDSG, permission to access and use health data will rest not only on the free decision of the person involved but must also be given in writing. With the eGK an authentication procedure such as the one described above using an electronic reader (eg the patient’s own PC) could possibly be employed in the context of data protection as legally binding permission to access, thus providing a practical way of disemminating e-health applications.80 It is to be expected, against the backdrop of present-day use of e-health facilities, that the rules governing compensation and Germany’s comparatively rigid legal ban on tele-treatment61 will also have to be reviewed: most telemedical treatments today require at both ends the presence of a doctor. If now by means of secure authentication case histories as well as actual findings can be adequately provided, medico-ethical considerations appear in a new light. Whereas up to now email communications between doctor and the patient with whom he is personally acquainted are legitimate, the hands-on use of sensors, home monitoring systems and webcams open up new perspectives that must be given a secure economic but especially medico-ethical base.

Accordingly, the present large-scale complexity of data transfer in health provision will not only continue to expand but will be increasingly centred on the patient. This will require taking steps to help the patient manage his or her records. It remains to be seen if the family doctor can do this by means of an ‘e-health guide’ or if it must be done through special communication centres (such as web-based information services). At a later stage support from a Consumer Health Informatics System (CHIS) is in both respects conceivable.62


Doctor-Patient Relations, Patient Empowerment

An example are those new commercial areas and e-health services that try to do justice to the patients’ need for information. For years we have observed a steady increase in so-called ‘health seekers’ representing a sizeable proportion of World Wide Web users.47-51 Whereas in past years the quality of health information in the World Wide Web or the negative consequences of unprofessional, even uncritical use of specialist information was considered dubious, health information meanwhile has reached the standard of the print media.52-57 The advantage of the new medium lies less in the extent of the information now accessible - since the seeker has difficulty finding his way and separating the wheat from the chaff – and more in the way patients and data can be selected, individualised and via expert opinion (‘third party rating’) evaluated. Both in actual treatment situations and ‘domestic enquiries’ the eGK could be a trailblazer for the provision of person-orientated, evidence-based and quality-controlled information. The registration and authentication of patient and/or doctor through an online server could follow from the introduction of the eGK into the harware provided for the patient’s and/or doctor’s PC. This would ensure, on the one hand, that no third party could fraudulently pretend to be the authenticated person and gain unauthorised access to records; and, on the other – by way of the patient’s digital case history – ensure that in future person-centred decision making is not based on false information resulting from problems of understanding or communication. Understanding these advantages, the patient seeking health advice – and one day the body of sceptical doctors59 – will increase the demand for person-centred, guideline-coordinated and, at best for the layman, clear health information on the WWW, generally widening the e-health market. It all hinges on making the provision of information so directly that it is also practical in a professional treatment situation. This puts the onus on makers of medical practice software to follow the innovative advances made by the designers of hospital information systems (KIS), since otherwise possible KIS modules for users could be in competition with the medical practice software market.

With the introduction of the eGK the structurally asymmetrical stamp of doctor-patient interaction will become more detached from the hitherto paternalistic model and reinforce the role of the patient towards shared decision-making.64,65 Once again a basic condition for overcoming unequal information-sharing between doctor and patient is the possibility of access to personal health records.57,60,66-69 As indicated above, this condition is fulfilled through the provision of mechanisms foreseen for the optional part, so that in the last resort the unequal division of knowledge comes down on the side of the patient.70 At the same time the patient’s satisfaction, compliance and willingness increases to engage actively in the health process64,71,72 Patients feel empowered because they now feel able to ask the doctor the right questions and to secure second opinions.41,73 Patients bring information to the consulation. Answering consumers’ questions, discussing and correcting possible erroneous information found on the Internet, the practitioners can communicate better (patient-centred) and promote a dialogue with their patients.74,75 The doctor can thus react more effectively to the concerns and needs of the patient and discuss what needs to be done. On an equal footing relevant decisions can be reached by doctor and patient in the spirit of shared decision making.77-79 It remains to be seen how many patients will be in a position to bear the ‘shared responsibility’ as well. Up to now, for instance, if a patient favoured a less promising form of treatment a doctor would be constrained to reject the treatment. Above all in the health service, the demand noted throughout society for greater autonomy on the part of the individual requires new differentiated procedures whereby the eGK can indeed become a key to ‘empowerment’ – and not in misguided combination with an ‘e-pass’ or a ‘jobcard’ a step towards creating a ‘glass-plated patient’ in the negative sense. And even when the new information and communication technologies have been established in consort with the patient’s interests, the question will remain if they serve the interests of all and do not threaten to set up a new form of ‘informal two-tier medicine’.81


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Michael Reiher Dipl.-Gesundheitsökonom Arbeitsgruppe e-Health und Health Communication Institut für Medizinmanagement und Gesundheitswissenschaften Universität Bayreuth Prieserstr. 2 D 95447 Bayreuth E.: michael.reiher@uni-bayreuth.de

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