Andre P. den Exter
Introduction: the roles of citizens
The patient–purchaser relationship is a subset of the third-party relationship that dominates health care, wherein the third party acts as the patient’s agent, assuming the decision-making power in the purchase of health services (Smith et al., 1997).
In recent years, the patient–purchaser relationship has become more promin-ent and the subject of debate. Developmpromin-ents such as increased ‘marketization’
of the health care sector and consequent ‘patient empowerment’ movements have led to patients asserting more influence on purchasers’ decision making.
Such developments can be expected to affect the role of the purchaser as the public’s agent. For instance, acting as a prudent agent for the patient means that purchasers are increasingly held accountable for contracting decisions by super-visory authorities and, more recently, also by the insured party or taxpayer.
Moreover, ‘patient empowerment’ reinforces patients’ involvement in decision making about medical treatment, choice of provider and purchaser, election of health authorities and control over budget and service allocations (Saltman, 1994).
The citizens’ role in purchasing decision making can be examined from two perspectives. First, one may consider collective and individual influences on pur-chasing decisions. Collective influence is exercised, for example, when con-sumers influence the package of care and benefit coverage. Individual influence refers to the power of an individual consumer to influence the purchase and receipt of care on his or her behalf.
The second perspective looks at the mechanisms available to citizens to influence purchasing decisions. These can be grouped following Hirschman’s notions on organizational behaviour into ‘voice’ and ‘exit’. Voice is essentially a political or administrative category, whereas exit is market-based. Voice
mechanisms include: information; consultation and assessment of public views;
advocacy groups; formal representation; and patients’ rights. Exit revolves around consumer choice (Hirschman, 1970).
This two-dimensional approach aims to characterize the roles of individuals as patients, consumers and members of the public. It indicates the level of citizen participation in purchasing decision making, clarifies the quality and manner of involvement and brings out the distinction between the individual and collective levels. This chapter is primarily structured according to the second dimension, mechanisms to influence purchasing decisions, but it also considers whether this influence is exercised collectively or individually.
Voice mechanisms
Information, consultation and assessment of public views Providing information, consulting the public and assessing public views consti-tute one aspect of consumer participation in collective purchasing decisions that set health care priorities and define the basic package of care. Although the effects of such approaches are limited in some cases, they can be quite effective in involving the public and measuring its preferences. One such initiative was the establishment of citizens’ juries in the United Kingdom (see Box 6.1). Other countries could learn from these experiences, although the model would clearly need to be adjusted to take account of local needs (Lenaghan, 1999).
Another, more recent, initiative in the United Kingdom is led by the National Institute of Clinical Excellence – the official body charged with assembling and disseminating scientific evidence on the clinical and cost effectiveness of health care technologies – which has established a citizens’ panel to provide input in its deliberations.
Apart from citizens’ juries and panels, the use of surveys is a useful instrument for acquiring information to be used in the development of national standards for core services to be purchased. The current United Kingdom government has
Box 6.1 Citizens’ juries in rationing decisions in the United Kingdom A group of broadly representative jurors is recruited from the community, with a primarily advisory role. The members address important questions about policy and planning, and their recommendations are meant to supplement existing democratic decision-making processes (Lenaghan, 1999). Since 1996, a number of citizens’ juries have been set up to enhance public involvement in the allocation of finite health care resources (Har-rison & Mort, 1998). They appear to be useful tools for enabling the public – as citizens rather than individual consumers – to define values or criteria for rationing decisions (Lenaghan, 1999).
formulated such standards in the National Service Frameworks (NSFs), which primarily implement guidelines and protocols on best practice, albeit with a strong element of prioritization (Robinson, 2001).
Many other countries have also made use of patient surveys and consultation techniques to assess public views. A well known example is the Dunning Report (Ministry of Welfare, Health and Cultural Affairs, 1992) from the Netherlands, whose guidelines on priority setting were based on consumer consultations, inter alia. The Swedish Parliamentary Priorities Commission has also developed a set of guidelines, whereby managers consider the needs of the population as a whole (derived from citizen consultations), whereas doctors consider the needs of individual patients (Swedish Parliamentary Priorities Commission, 1995).
At the moment, one of the leading institutions carrying out patient surveys in Sweden is the Picker Institute (mostly inpatient surveys in Scandinavia).
Its questionnaires include issues such as variations in quality, availability of medical personnel, waiting lists and accountability, and provide valuable data to support performance comparisons and evidence-based decision making.
Advocacy groups
Patient advocacy groups can also constitute a key mechanism for citizens to influence purchasing decision making. There is a wide variety of advocacy groups, ranging from general consumer platforms to specific disease associ-ations, each with particular characteristics – organizational structure, member-ship, degree of professionalism, and so forth – that may influence purchasers.
This is particularly the case for consumer and patient groups whose supporters may have different agendas.
These organizations may indirectly affect political decisions on collective purchasing by active lobbying. The extent of their influence varies from country to country, depending on the local traditions and degree of activism. The case of the Netherlands is one of relative success by consumers in influencing the pub-lic debate on priority setting. In France, patients’ associations have played an important role in fuelling public debate on health care issues (Box 6.2). The role of user groups is also growing in Italy, where consumer associations have taken part in monitoring the quality of care provided in both the private and public sectors, although they do not have an institutional role in health care planning and monitoring (Donatini, forthcoming).
In many countries, particularly among the CEE and CIS, there is little tradition of consumer groups and patient associations. In some countries, however, their roles are increasing. For instance, in the Czech Republic, patient organizations are invited to participate in negotiations between health insur-ance funds and providers on the list of services. In some cases (for example Alzheimer’s disease, diabetes) patient organizations advocate full reimburse-ment of drug costs, and their power is increasing (Hava & Dlouhy, 2002). None-theless, consumer advocacy groups have relatively limited influence on the benefits packages. These countries usually have statutory laws or derived legal norms controlling decisions on the basic benefits packages. Social (health insur-ance) law defines the nature and scope of statutory entitlements and procedures
and in most cases the relevant tariffs as well. Decisions on the nature of the benefits package are predominantly a parliamentary or governmental task, decided by the Ministry of Health (Israel, Poland, Hungary), or delegated to public bodies, such as the Board for Health Care Insurance in the Netherlands.
Formal representation
Citizens can also influence purchaser decision making through formal represen-tation. Traditional models of formal citizen representation include governments (national and regional), parliament, health insurance boards, regional or district health authorities and even the judiciary.
In many national health service countries the central government, in theory, representing the public, has a considerable impact on regional purchasing of health services through the allocation of health care resources. See Box 6.3, for instance, for a brief account of the role of the central government in Italy. Also, in some CEE countries, decisions on the nature of the basic benefits package are predominantly a parliamentary or governmental task, decided by the Minister of Health (for example, in Poland, Hungary), or delegated to public bodies. See Chapter 8 for a detailed account of the stewardship role of the government in steering purchasers.
Box 6.2 Role of consumer associations in the Netherlands and France In the Netherlands in 1995, the Dutch Consumers Association asked for an evaluation of the rule excluding dental care for adults from basic health insurance. After discussion in Parliament, dentures for adults were returned to the package. The main argument prompting the decision was that private insurers offered insufficient supplementary policies. In addition, people in need of dentures (1.9 million insured by the sickness funds are supplied with dentures) had insufficient private insurance to cover dental prosthesis and it was felt that this coverage could not be left to individual responsibility. Ultimately, the Dutch Cabinet decided to include dental prosthesis in both the sickness fund and standard (private) package up to a maximum reimbursement of 75% of the total costs, with the remaining 25% to be paid by the insured (Hermans & den Exter, 1998).
In recent years in France, patient associations have changed their trad-itional roles, shifting from fundraising for medical research towards influ-encing research choices and promoting the role of patients as active agents in their own health care. There has been a simultaneous reinforce-ment of consumer organizations: recently, health care associations have regrouped to form a collective unit, Collectif inter-associatif sur la santé (CISS), which has exerted pressure to strengthen the voice of consumers in various levels of the health system (Polton, 2001).
Virtually all countries with social health insurance systems have created a legal basis for citizen representation in the management of health insurance organ-izations. In these systems, statutory law regulates the underlying principles of health insurance, including mandatory social insurance, the principle of solidarity, entitlements to health care or reimbursement of health services, premium payment, and formal representation (the rights of consultative voting). These formal rights provide a means of consumer participation in pur-chaser decision making. Good examples of the rights of the insured are provided by the German Social Code Book (Box 6.4) and the similar Austrian code (Theurl, 1999).
The formal role of Dutch insured is, however, less clear. Although the Sickness Fund Act entitles the Minister of Health to make rules for the participation of the insured on the fund board, such rules have not been made. In 1994, the former Dutch Sickness Fund Council advised that the interests of the insured should be protected by ‘a reasonable amount of influence’ on the board.
This was generally interpreted as an equal share of board seats, but the funds found this unacceptable. Instead, most funds established a Council of the Insured (ledenraad), and some representatives of the insured also participate on the supervisory board (Box 6.5).
Box 6.3 The central government’s role in Italy
Italy introduced the principle of a common package of benefits in the 1994 National Health Plan. Additional regulatory measures to influence health purchasing in the regions include the introduction of fiscal federalism in financing health care and the planned introduction of a monitoring system to evaluate the extent to which regions guarantee the basic bene-fits package (Donatini, forthcoming).
Box 6.4 The German Social Code Book
The German Social Code Book (SGB V) regulates the structure of most health funds, including the executive management and the assembly of delegates who decide on bylaws and other regulations, pass the budget, set the contribution rate and elect the executive board. Usually, the assembly includes representatives of both the insured and employers. The assembly in substitute funds, however, includes only representatives of the insured.
The representatives of the insured and the employers are democratically elected every six years. Many representatives are linked to trade unions or employers’ associations (European Observatory, 2002a).
In France, the management of health insurance funds by labour unions was originally thought to assure representation of patients’ interests. Reforms in 1996, however, shifted part of this responsibility to the National Assembly.
Recently, there has been growing interest in finding alternative ways of involv-ing users in health care system decision makinvolv-ing and increasinvolv-ing accountability.
Current initiatives include increased consultations with local residents in regional hospital planning (Polton, 2001).
Despite differences in legal status, newly established social health insurance funds in Central and Eastern Europe also include citizen participation in purchaser decision making. Health insurance legislation formally stipulates the role of citizens in managerial decision-making structures in Bulgaria, the Czech Republic, Hungary and Poland, for example. Formal representatives in the region have developed a new approach for influencing purchaser decision mak-ing by mobilizmak-ing the judiciary. On several occasions, members of parliament in the Czech Republic (Box 6.6), Hungary and Estonia have used the judiciary to influence decision making on the introduction of copayments in the social health insurance system. They have initiated complaints at newly established Constitutional Courts, challenging the constitutionality of such governmental decisions. Although the role of the judiciary is limited to incidental cases, these examples show that court rulings may impinge upon administrative decisions.
Baltic health insurance systems, on the other hand, are oriented more towards Scandinavian models, with elected representatives on health councils. In these countries, the different organizational structures mean that the citizens’ formal role in purchasing decisions is stronger than in other CEE countries. However, some commentators argue that, in practice, citizens in these countries have had limited influence on purchasers due to the highly politicized setting (den Exter, 2002).
Box 6.5 The Council of the Insured in the Netherlands
The competencies of the Council of the Insured may include appointment of board members, amendment of statutory laws and approval of the budget and annual accounts. Other issues being discussed include the internal organization and the fund’s general policy, external policy, collaboration and merger, premiums and service package, and complaint procedures. In a way, the institutionalization of the Council restored the influence of the insured on purchasing decision making. Others consider it as part and parcel of ‘corporate governance’, which also covers the influence of share-holders or its members. A major advantage of the Council’s role is func-tioning as a platform to assess new ideas from the managerial board. Despite its formal role, however, both the insured and the funds considered the Council’s actual influence to be limited. Only in certain cases has the Council functioned as more than a sounding board by overruling specific managerial decisions, such as the planned merger of two sickness funds (College voor Zorgverzekeringen, 2002).
The Israeli National Health Insurance Act 1994 guarantees consumer representation in two statutory decision-making bodies, namely, the directorate councils of the health insurance funds, and the National Health Insurance Council, which advises the Minister of Health on changes to the benefits package. In practice, however, views of elected consumer representatives tend to be dominated by special interests, whereas the Health Insurance Council’s discussions are dominated by the agenda of the Ministry of Health (Chinitz, 2000).
Patients’ rights
Another means of enhancing the role of consumers in purchaser decision making and accountability is to stipulate their rights and the responsibilities of purchasers. The first two parts of this section emphasize patients’ rights as defined in international and national law respectively. The third part deals with complaint procedures as mechanisms to enable patients to realize their rights.
Finally, it addresses the figure of the ombudsperson to support patients.
Patients’ rights are subject to numerous international and regional declarations and conventions. These legal standards reflect a trend towards strengthening the rights of patients in the purchaser–provider relationship. The increasing complexity of the health care sector, the technological developments in medicine and the introduction of market elements in the health care system have increased the need to guarantee patients’ rights by law. Although some commentators have questioned the emphasis on the legal approaches to patients’ rights (Barolin, 1996; Angell, 2000), an explicit consideration of the patient’s perspective fits well with a general democratic evolution in many countries (Reiser, 1993).
The concept of patients’ rights is moving from a focus on individual rights – that is, restricting state intervention in the individual’s right to life and privacy – to a focus on the collective right to health care. In addition to ensuring access to health services, the right to health care has also been interpreted as including consumer participation via procedural mechanisms to implement their prefer-ences, for example ILO Convention 130, or the European Social Code. The World Health Organization took up the subject of citizen participation and col-lective rights as early as 1994, in its Declaration on the Promotion of Patients’
Rights in Europe, stating that ‘patients have a collective right to some form of representation at each level of the health care system in matters pertaining
Box 6.6 The role of the judiciary in the Czech Republic
The Czech court ruled that ministerial regulations introducing patients’
copayment for basic health care services violated the constitutional right to health care, forcing the government to reverse its decision and include a statutory list of health care benefits in the Public Health Insurance Act (den Exter, 2000).
to the planning and evaluation of services, including the range, quality and functioning of the care provided’.
Patients’ rights at European level
The Council of Europe has played a key role in the promotion and protection of human rights in health care (Box 6.7). A landmark was the establishment of the Biomedicine Convention (1997), the first legally binding treaty harmon-izing biomedical values, currently in force in 13 of 31 signatory countries. The Council has also defined citizen participation and representation in the health care system as a fundamental right.
The Council has elaborated proposals for mechanisms of participation, from the legal foundation and support of cooperative efforts to their institutional implementation. This constitutes the first comprehensive political programme of citizens’ participation at European level (Hart, 2001).
The harmonization of values by the Council of Europe is being strengthened by the requirements of the European Union’s single market. Its charter emphasized the rights of citizens in establishing a single market in the Com-munity (1989). The Maastricht and Amsterdam amendments of the EC Treaty (1993 and 1997) are even more explicit, stipulating community competencies in public health issues. Subsequent policies have strengthened health-related rights (for example, occupational health, and consumer protection). In add-ition, the internal market principles play a key role in defining patients’ rights to access health care across borders. The European Court of Justice, based on the free movement provisions, has in many instances ruled in favour of patient mobility and access to health care abroad.
Undoubtedly, the application of European principles by the Court has strengthened the concept of cross-border care (Box 6.8). However, at present the actual numbers of patients crossing borders to obtain medical services is still very low, such that cross-border health care takes only a marginal amount – between 0.3% and 0.5% – of the total health budget (Palm et al., 2000). None-theless, the Court’s approach to judgments on health care has created uncertainties and major difficulties for health care policy making in the member
Box 6.7 The Council of Europe and citizens’ rights
The Council of Europe recommends that governments of member states: