Since the 1980s the position of patients in Dutch health care has become stronger and more central. During the 1980s and 1990s the focus was on patient rights, while in the new century patients were increasingly considered as consumers. The 2006 health care reform made patients a major health market party, enabling patients to make independent and rational choices (Grit, van de Bovenkamp & Bal, 2008). As a consequence, patient participation and patient choice have become important policy priorities (Trappenburg, 2005). This section will examine the various forms of patient empowerment in the Netherlands in more detail, including patient choice, patient information, patient rights, patient participation, complaints procedures and patient safety. Cross-border care for patients in the Netherlands will also be discussed.
The government has a website (www.kiesbeter.nl) to help consumers choose health care providers. It used to contain information to assist consumers in selecting health insurance packages, but the government has argued there are sufficient nongovernmental websites available to fulfil this role. The site offers information on the availability of services, waiting lists and aspects of quality of services, including information collected by IGZ and quality information collected through specific measurements. General information about public health and health care can be found at another website – since 2014, VolksgezondheidEnZorg.info. In addition to these governmental initiatives, a variety of independent and commercial websites offer information on quality, waiting lists, prices, insurance plans and patient satisfaction.
The availability of information on the Internet has reduced information barriers for patients and users of health care services and promoted shared decision-making and self-management. Patients generally appreciate the choice among care options. Nevertheless, most people visit care providers without making informed choices. As most people are satisfied with their GP or other care provider that they know, they see little reason to change. Apart from that, the possibilities to make choices during the care process are usually limited. For instance, the choice of a hospital must already be made at the point of referral, even if a clear diagnosis has not yet been made. As a consequence, the propagated principle of the patient as an actively choosing consumer does not fully work in practice. The Care Map Netherlands website (zorgkaartnederland.nl), managed by the NPCF, provides comparable judgements of health care professionals and organizations by users of their services.
Health care providers have obligations concerning information for patients at the individual level. In accordance with the WGBO, physicians are obliged to inform their patients about planned examinations and treatments, as well as developments regarding examinations and treatments. Patients must be informed about the state of their health and expected health developments; the impact and risks of treatment; and possible alternative approaches.
New legislation is being developed on complaints, disputes and quality (the new Act on Quality, Complaints and Disputes in Care: Wet kwaliteit, klachten en geschillen zorg, Wkkgz). The Act, accepted in the Senate in October 2015, deals with the obligation of health care providers to provide care of good quality and to have available a written procedure for an easily accessible complaints procedure, including an official person for dealing with complaints. IGZ will be in charge of supervising the execution of the new law (see also section 2.9.3).
The Medical Research Involving Human Subjects Act (Wet medisch-wetenschappelijk onderzoek, WMO) rules that patients involved in medical research must be informed about the purpose, nature and duration of the research and any risk to their health.
The 1998 Organ Donation Act (Wet Orgaandonatie, WOD) stipulates that people who want to be live organ donors should be informed appropriately on the nature and purpose of any donation, and on the expected consequences and health risks (Legemaate, 2006). In contrast to some other European countries, in the Netherlands post-mortal organ donation is regulated through an explicit consent system. In other words, Dutch citizens must authorize post-mortal organ removal by a codicil or by registration in a national registry. In the absence of registration, relatives can give vicarious consent (Coppen et al., 2008; Gevers, Janssen & Friele, 2004). Since donation rates did not increase after the 1998 Act, changing the consent system was debated. Since international comparative research in 10 western European countries showed that non-consent systems do not guarantee higher donation rates, the current system remained in place (Coppen et al., 2005, 2008; Janssen & Gevers, 2005). The discussion, however, continues.
Since the introduction of regulated competition in health care in 2006, choices made by patients have become more important. Patients select a health insurance policy with the health insurer of their choice; insurers cannot refuse or differentiate among patients. Each year patients have the option to switch to another insurer.
Furthermore, patients can choose between restitution and benefit in-kind policies. In-kind policies may include a restricted choice of care providers but financial risk will be absent. With a restitution policy the choice of provider is free, and compensation of services is complete up to a maximum set by the health insurer. On top of the compulsory deductible (€385 in 2016) patients can opt for a voluntary deductible varying from €100 to €500 per year.
In addition to the uniform basic health insurance, patients can choose to purchase, from any health insurer, a complementary VHI policy. However, health insurers are not obliged to accept applications for complementary VHI policies.
In 2006, at the start of the new health insurance system, 18% of insured persons changed insurer (Dutch Healthcare Authority, 2006). After a drop in subsequent years, to 4.4% in 2007 and 3.6% in 2008 (Dutch Healthcare Authority, 2007, 2008), the number of people switching insurers increased to 7.0% in 2014 and 7.3% in 2015. Young people switch more often than older ones (Dutch Healthcare Authority 2015d).
Citizens are free to register with a GP of their choice. In practice, there may be limitations. For instance, GPs may only register patients living in a certain area, usually within easy reach of the practice. Sometimes, due to relative shortages of GPs at a local level, people can experience problems registering with a GP. Freedom of choice does also exist for other health care providers, although restrictions may apply for people who opt for an in-kind health care policy.
For long-term home care, patients can choose to receive care in-kind or to have a personal budget with which they can buy and organize their own care, either on a professional basis or from relatives and other informal carers (Groenewoud, Kreuger & Huijsman, 2006). Since 1998 the number of personal budget recipients has increased; in the years between 2005 and 2008 the average annual growth in this sector reached 28%. To some extent, this growth can be explained by the overall growth of long-term care. However, the increase in the use of personal budgets was more than proportional. This was the result of new applicants, who used to be eligible for long-term care but had decided not to apply for it. In the Netherlands personal budgets are more generous than in surrounding countries.
Changes in the organization of personal budgets in 2015 had important consequences for their approximately 200 000 users and their care providers. The decentralization of social support made the municipalities the issuing bodies of many budgets, which brought changes in the method of assessing eligibility. For care transferred to the Zvw, personal budgets were a new phenomenon for the health insurers. Furthermore, as a measure against fraud, care providers were no longer paid by their patients, but by the Social Insurance Bank (Sociale Verzekeringsbank, SVB), which acted as the budget manager for the patients. The transition resulted in discontinuity of care and late payments and caused financial problems for care providers.
Patients have the right to be clearly informed about treatments, related risks and alternatives. Except in emergency situations, patients also have the right of informed consent for a treatment. These rights were established in the WGBO.
Medical care providers are obliged to keep complete medical files for their patients. The Personal Data Protection Act (Wet Bescherming persoonsgegevens,Wbp) requires medical information to be kept confidential. The College for the Protection of Personal Data (College Bescherming Persoonsgegevens, CBP) is charged with overseeing fulfilment of the law.
In 2013 the European Directive on patient rights in cross-border care was incorporated in Dutch law. This includes recognition of drug prescriptions and the right to be informed on eligibility for health care in EU countries.
The government aims to further promote the position of patients by the Wkkgz, which has been accepted by the Parliament but is currently not yet enforced. The main points of the Act are: the right to be informed about the qualifications of providers; medical errors must be reported to patients; antecedents of care providers must be verified; care providers can report irregularities in a safe environment; dismissal for serious dysfunction to be reported to the Inspectorate; complaint officials to deal with complaints in a transparent way; and, if necessary, an independent dispute committee can pass binding judgements and assign indemnifications (https://www.rijksoverheid.nl/onderwerpen/patientenrecht-en-clientenrecht/). Other rights have been laid down in the Medical Research Involving Human Subjects Act (WMO) and the Organ Donation Act (WOD) (see also section 2.9.1).
Rights concerning quality of care are regulated by framework laws, without detailed requirements. Health care institutions must provide “responsible care”, based on a quality system in line with the Kzi (Ministry of Health, Welfare and Sport, 1997). This Act defines responsible care as “care of a good quality, which is effective, efficient and patient oriented and which is responsive to the actual needs of the patient”.
The concept of responsible care can also be derived from the BIG, the WGBO and the Zvw.
A specific regulation on physical access to health facilities can be found in the Building Decree (Bouwbesluit). The Decree has adapted a regulation for health facilities specifically aimed at accessibility for wheelchair users. In addition to the Building Decree, there are also Dutch Standards (Nederlandse Normen, NEN), which contain agreements between stakeholders. There are specific NEN-standards concerning accessibility to the environment of buildings, and the buildings and houses themselves.
There are different options and pathways for patients to file complaints with regard to health care providers in the Dutch health care system. Options described in Table2.1 are directly accessible (Legemaate, 2006).
Table2.1
In addition to personally communicating a complaint to a health care provider, patients can address a complaints officer or the Health Care Information and Complaints Service (Informatie- en Klachtbureaus Gezondheidszorg, IKG) (Hout, 2006). Complaints officers may be hired by health care providers to act as mediators. IKGs operate independently from the health care providers and are set up to inform patients and support them in case of complaints. Psychiatric hospitals must give patients the opportunity to consult a patients’ confidant according to the Psychiatric Hospitals Compulsory Admissions Act (BOPZ). The role of patients’ confidants has not been regulated in other health care sectors (Legemaate, 2006).
Complaints about an institution or individual person in health care can be addressed to a complaints committee (Hout, 2006). According to the Act governing the right of clients in care to complain (Wet klachtrecht clienten zorgsector, WKCZ), all health care providers must install complaints committees, consisting of at least three members. Complaints considered to be valid can result in recommendations by the committee for the health care provider, but committees cannot enforce measures or sanctions. After a complaint has been dealt with, appeal is not possible. Patients more often follow an informal procedure than submitting their complaint to a complaints committee (Legemaate, 2006). Research from 2004 and 2008 found that most patients were satisfied with the intervention of hospital complaints committees (Friele, Sluijs & Legemaate, 2008; Kruikemeier et al., 2009).
A complaint lodged with the board of a psychiatric hospital, according to Article 41 of the BOPZ, must result in the installation of a committee to deal with the complaint. This regulation differs from the rulings in the Act governing the rights of clients in care to complain (WKCZ) in three ways. First, the grounds on which a complaint can be made are limited; second, the committee can suspend the procedure against which the complaint is directed; and, finally, the patient can appeal if the committee decides that the complaint is unfounded (Legemaate, 2006).
For complaints in a number of professions a disciplinary system is in place. These professions are: physicians, dentists, pharmacists, health care psychologists, psychotherapists, physiotherapists, midwives and nurses. According to the BIG, any directly involved person can submit a complaint to one of five regional disciplinary boards, consisting of legally qualified members and health professionals (Hout, 2006). Complaints to these professionals, by individuals or institutions, can also be submitted via IGZ. A disciplinary board can take the following measures, in order of severity: (1) a warning, (2) a reprimand, (3) a fine up to a maximum amount of €4500, (4) a temporary suspension from the register for a maximum of one year, (5) partial denial of licence to practise the profession and (6) removal from the register. If the complaint is not considered valid, patients can appeal to the Central Disciplinary Board. The number of complaints to disciplinary boards made by patients and their families was about 1300 every year between 2003 and 2007 (Tuchtcolleges voor de Gezondheidszorg, 2007). This represents one complaint per 300 health care providers per year (Hout, Friele & Legemaate, 2009). In 2008, 75% of complaining patients were satisfied with the regional disciplinary boards (Kruikemeier et al., 2009).
As complaints committees and disciplinary boards cannot grant financial compensation to patients, for instance in case of injury after medical error, damage assessment can be carried out by a dispute committee (Geschillencommissie Zorginstellingen). The complaint first has to be reported to the health care provider. When a complaint is reported, the provider has to agree to the amount of compensation, which cannot be higher than €5000. Damage assessment is only possible if the relevant provider has joined a dispute committee (Health Care Inspectorate, 2008). The number of new verdicts and settlements by the dispute committee care agencies was 23 in 2014, 30 in 2012 and 29 in 2012. The proportion of complaints found to be (partly) valid varies: 27% in 2014 and 55% in 2013 (www.degeschillencommissie.nl/). No appeal is possible following the judgement of the dispute committee.
In addition to specific health care regulations, general regulations are applicable in health care. These are regulations from the Penal Code, Civil Law, Labour Law and Criminal Law. For patients, Civil Law is important. Rulings from the Civil Code and the Code of Civil Procedure enable financial compensation. Each year only a limited number of complaints go to the civil court (Legemaate, 2006). Furthermore, some professional groups have their own codes of conduct (Hout, 2006). Patients can deliver a complaint to these organizations. The findings of professional disciplinary committees have no consequences for the registration of physicians.
If patients disagree with health insurers’ decisions, for example on reimbursement, they can file a complaint with (1) the health insurer, (2) the Foundation for Complaints and Disputes In Health Care Insurance (Stichting Klachten en Geschillen Zorgverzekeringen, SKGZ) or (3) make an appeal to court. A complaint directed to the Foundation may lead to mediation between the insurer and the consumer, or to binding advice from the Dispute Committee. In 2014, 2365 complaints were submitted to SKGZ (+2% compared to 2013) and 518 disputes (+10%) (www.skgz.nl/).
The democratization and emancipation of patients throughout the 1970s and 1980s have resulted in a greater involvement in health care. Patients organized themselves and gained influence on issues such as insurance policies, medical guidelines and medical scientific research (Trappenburg, 2008). Since the late 1990s the emphasis in patient involvement has been more at the individual level. Next to their formal representation in councils and other bodies, patients are now also expected to make informed choices regarding the selection of health insurers and providers. Awareness is growing that these assumptions do not apply to all patients, and that the interests of these groups must be taken into consideration.
In Dutch health care the interests of patients are represented by many general and categorical organizations, many of which are represented in the NPCF.
Patients can influence the policy and management of health care institutions. Since 1996 collectively financed organizations in the fields of social care and health care have been obliged to have a representative client council, as laid down in the Client Representation Act (Wet Medezeggenschap Cliënten Zorginstellingen, WMCZ). The Act gives clients the opportunity to make recommendations with regard to topics, such as the budget, annual accounts and important changes in the organization. Client councils do not seem to be an effective instrument to promote client participation. Hospitals may experience difficulties in installing a representative council. Compared with other forms of patient participation, the costs of these councils turned out to be relatively high (van der Voet, 2005).
Health insurers are obliged to involve patients in purchasing decisions. According to the Zvw, patients should have tools or instruments to influence the policy of insurers. This can be realized, for example, by means of satisfaction surveys among insured persons or by setting up a members’ council. The councils, consisting of elected insured persons, may advise on the annual accounts or advise the board of directors. The NZa supervises the obligation for health insurers to involve patients. A Bill on the Influence of the Insured was proposed to Parliament in 2015.
The Dutch regulations on cross-border care comply with European regulations and jurisprudence. The regulations and case law on cross-border care, including the new cross-border directive (Directive 2011/24/EU), have been incorporated in the 2006 Zvw. People with basic health insurance have the right to reimbursement of health care services abroad according to the conditions and reimbursements levels of the act (Hamilton, 2008). Furthermore, people who live elsewhere but work in the Netherlands can be subject to the Act and are therefore obliged to purchase health insurance in the Netherlands. The Act also regulates the payment of premiums of people who are not working in the Netherlands, but who have a right to obtain care under basic health insurance (Hamilton, 2008). The Netherlands was one of the first countries in the EU to implement these regulations and case law. For insured Dutch persons, arrangements have been agreed with the other EU/EEA countries and a number of other countries (Health Care Insurance Board, 2009).
In 2006 there were many cross-border arrangements between the Netherlands and Belgium, and to a lesser extent between the Netherlands and Germany. These cross-border arrangements are mostly based on bilateral agreements between providers and health insurers/sickness funds across borders; they therefore function in parallel to the opportunities enabled by European regulations and case law. Little information is available on the number of patients making use of cross-border arrangements (Busse et al., 2006). Dutch health insurers have agreements with health care providers abroad, for example regarding inpatient and outpatient care and on knee and hip surgeries and rehabilitation (VGZ, 2009).
People living in border areas, as well as younger people, are more willing to travel abroad than other people. Patients with higher incomes are also more prepared to travel abroad for medical specialist care than those with lower incomes (Loermans & de Jong, 2008). In 2007 three-quarters of the Dutch people said they would be willing to travel to another EU country to receive medical treatment, while 4% reported having received medical treatment in another EU Member State in the previous 12 months (Gallup Organization, 2007).
Between 2008 and 2012 expenditure for cross-border care grew by 30%, which is higher than the increase of overall health care expenditure (21%). However, the volume of cross-border care continues to be modest: 1% of total health expenditure in 2013 (IBO Grensoverschrijdende zorg, 2014). Most cross-border care is provided in neighbouring countries and in holiday countries for Zvw-insured persons. Cross-border care can have advantages for health insurers; for instance, they may be able to make better agreements among more diverse providers, as well as patients, because cross-border care broadens their choices. However, there are disadvantages as well. Health insurers have less insight in the quality and need for care provided abroad. Also, possibilities for cost control are lower: if insured persons use the European Health Insurance Card (EHIC), insurers are obliged to pay the bill for care that was judged to be necessary by a foreign provider. Among other things, the interdepartmental working group on cross-border care advised that information on cross-border care should be improved; that health insurers should better use their instruments to control expenditure on cross-border care; cross-border collaboration between providers should be promoted; and health care for Dutch people abroad should be promoted (IBO Grensoverschrijdende zorg, 2014).