2.9. Patient empowerment

2.9.1. Patient information

All county councils and regions provide information about how and where to seek care through their websites. There are also several national projects aimed at improving the access and use of information for patients and citizens. The initiative 1177.se is a collaborative project between all county councils and regions in Sweden. At the web site 1177.se, information written by medical staff about pharmaceuticals, different medical conditions and pathways for seeking care, etc. is provided. There is also a chat-service where people can ask questions and get quick answers. At the phone line 1177, which is open 24 hours every day, medical staff are available to give advice about medical conditions and where or at what level to seek care if necessary. Citizens may also create their own account on the web site where they can, for instance, make health care appointments, renew drug prescriptions and obtain information about test results. There are also private initiatives such as omvard.se which is a web site financed by the Confederation of Swedish Enterprise (Svenskt Näringsliv). One important aim of omvard.se is to provide citizens and patients with comparative information about providers on which to base their choice of provider. The comparison of providers is partly based on information collected through National Patient Surveys.

The public release of information regarding quality of care started with information about waiting times in the 1990s (www.vantetider.se). Moreover, in the 1990s, a national population survey (Vårdbarometern) was initiated regarding attitudes towards health care performance. The design makes it possible to compare developments in different county councils. One important initiative is the annual regional and transparent comparison (Öppna jämförelser) which has been a collaboration between the National Board of Health and Welfare and the SALAR since 2006. The most important source of data for the regional comparisons are the national quality registers (see section 2.7.1 Information systems), but also information about waiting times, comparison of expenditures/costs provided by the SALAR and population and patient surveys are used. The open comparisons for health care services from 2011 include 173 indicators in total, organized into different categories, such as prevention (e.g. child immunization and mammography); patient satisfaction and trust (based on survey); access; surgical treatment (e.g. complications, re-operations); and drug treatment (e.g. use of antibiotics). The focus is on comparison and ranking across county councils for each indicator. Results are shown for hospitals for some 50 indicators, but without rankings.

Developments towards choice and privatization have created a need for information on differences in quality and patient satisfaction across providers. A recurrent National Patient Survey (Nationella Patientenkäten) is administered to all health care providers in primary care (since 2009) and specialized hospital care (since 2010) in participating county councils. The National Patient Survey is coordinated by the SALAR and conducted every two years. All county councils and regions are expected to participate in the 2011 survey on primary care. The information generated through this survey makes it possible to compare providers in primary care since 2010 and in specialized care since 2011. The results are public and one purpose is to guide people in their choice of provider (see section 2.7.1 Information systems).

There is limited information on the actual use of public information about quality of care by patients and citizens. In a recent study, based on a population survey in three Swedish counties, it was found that people are rather passive in their search for information when choosing a primary care provider (Glenngård, Anell & Beckman, 2011). People tended to get their information from providers with whom they had previously been in contact.

2.9.2. Patient choice

Choice of health care provider has been introduced gradually since the 1990s. In the early phases of this development, provider choice for patients was not combined with privatization and freedom of establishment of providers, and payment to providers seldom followed the choice of patients. In 1991, a recommendation was issued by the Federation of County Councils giving patients the right to choose their provider in primary care and to seek care at any hospital or specialist within the county council. Several county councils agreed to expand the option to choose by including neighbouring county councils. In 2001, the recommendation was revised to include day treatment as well.

Choice of primary care provider for the population combined with freedom of establishment for providers accredited by local county councils became mandatory in Sweden in January 2010. This is articulated in the Health and Medical Services Act passed by the parliament. More than 200 private primary care providers have been established in connection with or after the introduction of freedom of establishment in Swedish primary care (Swedish Competition Authority, 2010b). Patients can register with any public or private provider accredited by the local county council. In all county councils, except Stockholm county council, passive registration is practised for individuals who do not make an active choice of primary care provider. Such passive registration is based on the latest visit or shortest geographical distance to a provider. A recent study shows that approximately 60% of the population in three counties in Sweden (Halland, Skåne and Västra Götaland) feel that they have made a choice of primary care provider in connection with or after the introduction of the reform (Glenngård, Anell & Beckman, 2011).

Historically, the patient’s right to choose a provider has not been part of formal national legislation in Sweden but rather has been adopted by county councils and municipalities on a voluntary basis. In 1992, a national guarantee of treatment for 12 elective treatments was introduced. The guarantee was the result of an agreement at the national level between the Ministry of Health and Social Affairs and the Federation of County Councils. The government granted extra funding to the county councils and gave patients who did not receive care within three months the right to seek treatment in another hospital, either in the same county or outside the patient’s county of residence. In practice, this guarantee had limited effect since most patients chose to wait for treatment at “their” hospital, even if the waiting time exceeded three months. Since 2005, there has been a new care guarantee, based on the “0–7–90–90” rule – meaning instant contact (zero delay) with the health care system for consultation; seeing a GP within 7 days; consulting a specialist within 90 days; and waiting for no more than 90 days after being diagnosed to receive treatment. The guarantee applies to the whole country and also includes all elective care in the county councils. In 2010, the guarantee was incorporated into national legislation through a change in the Health and Medical Services Act.

2.9.3. Patient rights

There is no specific law regulating patients’ rights in Sweden, as opposed to in other Nordic countries. Instead, different rights for patients, such as patient choice or the right to information, are incorporated in other legislation and are formulated in policy agreements between the state and the county councils through the SALAR. Regulations are mainly targeted at the behaviour of personnel and only indirectly at patients’ rights. For instance, personnel are obliged to provide individually tailored information but patients have no articulated right to receive such information (Winblad & Ringard 2009). In March 2001, however, the government appointed a committee of inquiry with the task of investigating how to strengthen the patients’ position and influence over care and develop a proposal for a new patients’ act (Ministry of Health and Social Affairs 2011). Preliminary results are to be delivered in June 2012 and a final proposition no later than in January 2013. The proposal should include how to:

• provide health care on equal terms for the population;
• increase and strengthen patient choice;
• improve access to information and advice;
• encourage different government agencies to go about strengthening the patient’s position; and
• enhance better exchange of information between the patient and the caregiver.

The basic principle of health care provision in Sweden is that everyone has the same right to good quality care. The 1982 Health and Medical Services Act defines the county councils’ responsibility to provide all their citizens with high-quality health care services. There are several different bodies sharing the task of safeguarding patients’ interests in receiving adequate and safe health care. In 1999, patients’ rights in the health care system were further strengthened when the county councils’ obligations towards them were increased through a change in the Act. According to the revised Act, the health care system is responsible for strengthening the position of the patient through individualized information, opportunities to choose between alternative treatments and the right to a second opinion, when suffering from a life-threatening or other particularly serious disease or injury.

Moreover, every county council and municipality must have a patients’ committee. The committees should support and help individual patients and contribute to quality development in the health care system by helping patients to get the information they need to safeguard their interests, promoting contact between patients and health care personnel, helping patients to get in touch with the appropriate agency and reporting to care providers and care units any observations and irregularities of significance to patients.

2.9.4. Complaints procedures

The HSAN is the government agency that decides on disciplinary measures in the event of complaints or possible malpractice. It can enforce disciplinary measures such as a warning, or can limit – or even withdraw – a health care professional’s right to practise. In 2010, 4563 complaints were made, and the HSAN judged a similar number of cases. About 11% of all complaints led to disciplinary measures and a majority of all cases concerned physicians. About 20 withdrawals of health care professionals’ right to practise (physicians, nurses, dentists) are made every year (HSAN, 2011).

The process regarding complaints connected to medical staff is separated from the system that compensates patients for injuries. In 1997, every health care authority became legally obliged to provide compensation for injuries sustained in the course of clinical procedures, regardless of fault. Every institution providing health services has a legal obligation to provide compensation for injuries that occur in the course of their activities. Under the terms of the Patient Injuries Act, any person suffering an injury in connection with medical or dental care in Sweden is, in certain cases, entitled to compensation under the patient injury insurance scheme. For patients receiving treatment through one of the county councils or from a private care provider with whom the county council has entered into a treatment agreement, the county councils are insured by the County Councils’ Mutual Insurance Company (Landstingens Ömsesidiga Försäkringsbolag). Compensation may be paid if the patient has: (1) suffered an injury that could have been prevented; (2) incurred an infection in conjunction with treatment; (3) suffered an accident during medical or dental treatment; (4) been prescribed the wrong medicine; (5) been incorrectly diagnosed; or (6) if defective medical or dental equipment has been used. Patients can be compensated for loss of income, additional expenses, pain and suffering, and for disfigurement or permanent disability.

In approximately 45% of all cases the patient is given compensation. Under the Patient Injuries Act, the institutions are insured to meet demands for financial compensation from patients who have suffered such an injury (County Councils’ Mutual Insurance Company, 2011). During 1997, approximately 8000 complaints were made. This figure increased to approximately 9000 in the year 2000 and has been fairly stable since then. During 2010, 10 500 complaints were made and SEK 420 million (€47 million) was paid in compensation to patients who had suffered injuries that could have been prevented or their relatives. The amount of compensation was around SEK 25 000 (€2800) per patient (County Councils’ Mutual Insurance Company, 2011).

2.9.5. Public participation

The most important means of public participation in Sweden are the general elections held every fourth year. In the 2010 election almost 85% of those entitled to vote exercised their right to vote in the general elections at the national, county council and municipal levels (Election Authority, 2011). Of particular importance for health care are the elections at county council level, since the most important task of county councils is health care. Almost 90% of the county councils’ budgets is allocated to health, medical and dental care (see chapter 3).

There are more than 100 patient and consumer organizations in the country representing different patient groups. The size of the organizations varies considerably. The largest organization (Reumatikerförbundet) has more than 60 000 members whereas the smallest (Föreningen för Neurossedysskadade) has less than 300 members. According to a survey among 60 of the organizations in Sweden, the most important aim of the organizations was to safeguard the interests of their members by means of influencing decision-makers (Virdeborn, 2006). The actual success in influencing decision-makers of course varies among the patient organizations and there is a lack of information about how influential such organizations have been in policy processes (Winblad & Ringard, 2009).

2.9.6. Patients and cross-border health care

Patients have the right to seek care at hospitals or with specialists (both private and public) throughout the country, irrespective of which county council or region they live in based on agreements between the county councils and the Ministry of Health and Social Affairs (see section 2.9.2 Patient choice).