2. People-centred mental health policies and services
People-centred mental health systems place the individual at the centre of their own care, focusing on the individual service user’s capabilities, knowledge and value-setting. People-centredness acknowledges the needs and wishes of the individual and focuses on how people can manage their own health, giving people a proactive part in care. This chapter describes how OECD countries have been accelerating their progress on creating person-centred mental health systems, but also shows that there is need for improvement. Countries should continue to prioritise person-centred mental health care, including through actions such as co-producing services and measuring experiences and outcomes of mental health care through the use of patient-reported measures.
OECD countries increasingly recognise how important it is to equip policy makers, care providers and service users in health systems with tools to move towards a person-centred system, and improvement is being made on what it actually means to deliver person-centred mental health care. As a result, countries have already taken significant steps towards a people-centred health system, such as enhanced possibilities in choosing care providers or the provision of information about health care treatment options, helping people to make better choices in their own care path. Mental health care policies are not left behind, and significant attention has been given in recent years to how to strengthen mental health systems to make them increasingly person-centred.
Over the years, OECD countries have accelerated their progress towards person-centred mental health systems, by prioritising it on their policy agendas. Countries are reshaping their mental health systems through routine consultation with mental health service users in policy planning, through developing strategies and services for key populations with specific mental health needs, establishing service-user groups in policy design and increasingly making consultation with services users and carers systematic in care delivery, for example using personal care plans. However, although attention has increased in many mental health systems, people-centredness is at best inconsistent, and at worst tokenistic, and there is still a lot to improve.
Countries should continuously prioritise people-centredness on their policy agendas to build resilient systems and deliver appropriate care, consulting experts in the field for guidance and support in the implementation of people-centred mental health care. More systematic consultation of mental health service users should be a priority in all OECD countries – through surveys of service user experience of the mental health care system, on the system priorities of service users, family and carers, and through the use of patient-reported measures of outcome and experiences at the service level. There are also policies and practices that hold promise for making an individual-centred perspective more significant in mental health systems, including peer delivered services or co-designed services, which have been adopted in a few OECD countries but could be developed in many more.
People-centred care is a way forward to improve health care systems
In the 21st century, making health systems more people-centred is a guiding principle for OECD countries in redesigning health systems. People-centred systems move away from a supply-driven health care system, based on the idea that the patient has a passive role in their care path. Instead, a people-centred system highlights the individual patient’s capabilities, knowledge and value-setting. It acknowledges the needs and wishes of the individual and focuses on how people can manage their own health, giving people a proactive part in care. Placing people at the centre in health systems also pushes health systems to become more responsive, integrated and accessible (OECD, 2019[1]; OECD, 2017[2]; Gurría and Porter, 2017[3]; OECD, 2019[4]; OECD, forthcoming[5]; van den Berg and Guanais, 2020[6]).
People-centred health care has the potential to generate significant benefits and to help overcome shortcomings in contemporary health systems, by both re-focusing attention on the needs and preferences of the health system user, and increasing service user involvement in their own care (Gurría and Porter, 2017[3]; OECD, forthcoming[5]). Taking stock of what is valuable to the service user can also improve the value of the return on investment in health care, while increasing active involvement in care through processes such as shared decision-making with professionals can lead to increased ability to self-manage and control long-term health conditions (van den Berg and Guanais, 2020[6]; OECD, 2019[1]). Efforts to re-orientate health care towards the needs and preferences of the service user, or example through shared decision making processes, can lead to potential benefits such as increased satisfaction with care and better relationships with care providers (Aubree Shay and Lafata, 2015[7]; Hughes et al., 2018[8]).
The OECD People-Centred Health Systems Framework
Defining and implementing people-centredness in health care includes a range of different perspectives and considerations. For example, including service users’ wishes and preferences in care planning, reflecting views of service users and their families in policy making, and respecting the human rights of service users. Recently, steps such as co-designed services and peer support have also been growing in importance. To identify and categorise the main components of ‘people-centred care’, the OECD developed the People-Centred Health Systems framework to describe and measure people-centredness in a systematic way, and enable benchmarking of people-centredness across OECD countries (OECD, forthcoming[5]). This framework can help to identify tools that help health systems to become more people centred. The framework is built on five dimensions: voice, choice, co-production, integrated care and respectful care (Box 2.1).
The OECD Framework for People-Centred Health Systems (PCHS framework) is designed to identify key dimensions of people-centred health systems and the policies that must be put in place to achieve people-centredness. The Framework builds on existing frameworks for people-centred care, which propose different structures for thinking about this concept but share many of the same underlying principles for what key principles must be put in place to move towards a people-centred health system. The framework focuses on five dimensions of people-centred care identified in the literature – including ensuring voice, choice, co-production, respectfulness, and integration – and provides key quantitative indicators for domains and policy benchmarks that can help countries assess to what extent their systems are people-centred. By underpinning the key priorities of people-centred systems with key outcome, process and policy measures, the framework also helps to identify synergies to make health systems more people-centred.
OECD countries are taking important steps towards a people-centred health system
Many OECD countries have taken important steps towards increasing people-centredness in their health systems, notably when it comes to promoting the patient voice, and some choice within the health care system. Representation of patients in decision-making for health care has increased in the recent year. An OECD survey in 2019, showed the involvement of patient representatives in decision-making processes for health authorities in a number of OECD countries, including Austria, Canada, Luxembourg and Germany (OECD, forthcoming[5]). For instance, in Luxembourg, patients are included in the development of disease-specific policy plans, including cancer, rare diseases and cardiovascular diseases. Fewer countries have taken steps to more systematically include patients in decision-making around health care research or funding for research (ibid). Norway is an exception, where the majority of funded projects through both the Research Council of Norway (RCN9) and the Regional Health Hospital Authorities (RHA) – the major government funding avenues for health care research – included public involvement (Malterud and Elvbakken, 2020[9]; Norwegian Directorate of Health, 2015[10]). Additionally, health systems show patients have a substantial flexibility in choosing their health care services across multiple levels of the health system, from primary to hospital care. A survey amongst 31 reporting countries shows that patients have free choice of choosing primary care in 18 OECD countries, outpatient specialist level in 17 countries and at hospital level 16 countries offer a degree of choice (OECD, 2016[11]).
People-centred care is essential to build high-performing mental health systems
Individual-centred, or person-centred, mental health care is a high-level policy goal and is routinely included as a fundamental component of international declarations and national action plans. “Individual-centred care” is one of the six principles of a high-performing mental health system established by the OECD Mental Health Performance Framework (OECD, 2019[12]) The prioritisation of person-centredness is also reflected in other international strategies for mental health care, notably the WHO’s Comprehensive Mental Health Action Plan 2013-2020, agreed by all WHO Assembly members, puts at its centre the importance of service user-driven treatment and recovery plans and, where appropriate, with inputs of families and carers (WHO, 2013[13]). Individual-centred care, referred to more broadly as ‘people-centred’ care, is a driving policy priority across OECD health systems, and when it comes to mental health this approach is equally, if not more, critical.
There are dimensions of mental health that also make people-centredness both more critical, as well as more challenging. The stigma and discrimination that often accompanies mental illness, the lack of understanding around mental disorders, and the ability to detain and compel treatment, make people-centred mental health care all the more important but also all the more complex (Bee et al., 2015[14]).
In the OECD Mental Health Performance Framework, a high-performing mental health system focuses on the individual who is experiencing mental ill-health (OECD, 2019[12]). In this Framework, “Individual-centred care” should:
Ensure the individual feels they have ownership of their care;
Be respectful and inclusive of the individual, carer (where relevant), and family;
Ensure care and treatment is tailored to individual needs and preferences;
Empower the individual to realise his or her own potential and contribute to society.
People-centred mental health care is a high-level policy goal shared across OECD countries. However, implementing effective and rigorous person-centred care in mental health remains challenging. While people-centredness is a strategic priority in OECD mental health policies and planning, implementing person-centred care, and ensuring that service users’ views are both heard and make an impact, is less well-developed.
Do individuals have ownership of their own care?
Elevating the service users’ voice in mental health care
In many respects, the mental health sector has led the way in prioritising mental health service users’ voices. Mental health service users are represented in national groups or national coalitions in 21 out of 29 respondents to the OECD Mental Health Performance Benchmarking Data and Policy Questionnaires (OECD, 2020[15]). Globally, the WHO Atlas 2017 (WHO, 2018[16]) found that globally only 52% of reporting countries, and 60% of countries in the EU region, had a formal collaboration with service users/family/caregiver advocacy groups.
In OECD at least 13 countries have national mental service-user group or coalitions of service user groups. These groups elevate the concerns of mental health service users, and often their families or carers, and are frequently the key contact point for consultation on national mental health policy or planning. Mental health service user representation is organised differently in different countries, with different degrees of national organisation in a single representative group (Table 2.2). The two groups GAMIEN-Europe (Global Alliance of Mental Illness Advocacy Networks-Europe), a non-profit patient-driven pan-European organisation, representing and advocating for the interests and rights of persons affected by mental ill-health, and EUFAMI, which represents all family members of persons affected by severe mental ill health at European level, play an important role in advocating for the rights and preferences of mental health service users, their families and carers at the European level, for example at the European Parliament.
In Australia, the National Mental Health Consumer & Carer Forum (NMHCCF) was established in 2002 to ensure mental health consumer and carer involvement at the national level of policy development and has 28 members of which 14 are mental health consumers and 14 are mental health carers. The NMHCCF is funded through state, territory and Australian Government contributions to be an independent voice for mental health consumers and carers. In Lithuania, mental health patients’ community “Viltis” is an association of more than 11 000 members, which focuses on rehabilitation support for mental health care users, while the ‘Lithuanian care community for mentally ill people’ is an umbrella non-governmental organisation that brings together people with mental disorders, their families and communities throughout Lithuania. Similarly, in Norway ‘Rådet for psykisk helse’ (The Norwegian Council for Mental Health) consists of 31 member organisations within the mental health field, while in Portugal “FamiliarMente” is the Portuguese Federation of Associations of Families of People with Experience of Mental Illness. In Slovenia, patients representatives are part of interdisciplinary working groups that are a part of governance mechanism of the national mental health programme in Slovenia.
In other countries, there are multiple different mental health service user groups, for example in Belgium where there is a service user group for each national language, in Canada where there are at least three significant national groups and coalitions (Mental Health Commission of Canada, Canadian Alliance on Mental Illness and Mental Health, Canadian Mental Health Association), or in Denmark (Landsforeningen for psykisk sundhed – The National Association for Mental Well-being and Landsforeningen af Psykiatribrugere – National Association of Current and Previous Mental Health Service-users.
In some countries, non-governmental organisations take the lead in representing the views of mental health service users. In Iceland, There are several NGO organisations and forums that provide support and guidance to where to find appropriate counselling and mental health services. All but one of these NGOs work together and meet twice a year with the Ministry of Health to discuss current issues and future direct regarding mental health in Iceland. In Mexico, there is not a national group or coalition, but there are some small groups that advocate for mental health service users. One of the largest groups in the country is The Voice Mental Health Network that is a group of non-profit citizen organisations made up of family members, users and professionals dedicated to improving the quality of life of people with a mental disorder, as well as that of their family and friends.
Individual care plans are common in OECD countries, but not systematically used to their full potential
People-centred care in mental health care is not limited to service user consultation for high-level strategies or policies, but is also a principle that needs to be operationalised at the service level. Actively involving mental health services users in planning their care, and ensuring that service users’ needs and preferences are heard, promotes ownership of care and is a respectful and inclusive approach to care (Luchenski et al., 2018[17]). Putting service users’ rights at the centre of care has been found to contribute to stronger feelings of ownership throughout therapy, higher quality decision-making and increased treatment adherence, which all contribute to improved outcomes (Carlos Santos and Cutcliffe, 2018[18]). There is strong consensus about the importance of shared decision making, which is found to lead to increased help-seeking behaviour, compliance with treatment decisions, reduction in errors in treatment and reduced stigma (Slade, 2017[19]; de Bienassis et al., 2021[20]).
Interventions to support increased shared decision-making focus on providing information and improving communication, by using tools such as psychoeducation, discussion prompts and mobilising techniques to engage patients and carers (Comeau et al., 2019[21]; Liverpool et al., 2020[22]; Steinert, Noorthoorn and Mulder, 2014[23]). In OECD countries, service users of mental health care are increasingly involved in shared decision-making processes around their care, including through the use of personal care plans, engagement in discussion and decisions about how services are run, for instance through service user councils in inpatient settings.
Individual mental health care plans, with clinicians and service users working together to agree on care and treatment decisions, are one widely used way of incorporating service users’ preferences and values into their care. Caretakers of people using mental health services have also increasingly been involved in the development of mental health care plans, especially in child and adolescent care (Liverpool et al., 2020[22]; Slade, 2017[19]).
Personal mental health care plans with clinicians and service users working together to agree care and treatment decisions, are now used in the majority of OECD countries. 27 out of 29 countries that responded to the OECD Questionnaire require involvement of service user or a representative in their mental health care (e.g. in designing their personal care plan) in at least some settings (OECD, 2020[15]). However, the degree of service user involvement in their development appears to differ. While the majority of countries required, or strongly recommended, service users’ involvement in care design of care plans, in many countries this is required in principle but does not always happen or depends on the care setting. Of the 29 countries that have responded to the OECD Questionnaire, the majority require some form of involvement of service user or a representative in their mental health care processes (Figure 2.1), but involvement differs based on care settings or other requirements.
Source: OECD (2020[15]), OECD Mental Health Performance Benchmarking Data and Policy Questionnaires.
As an example, in Canada, where health care service provision is a provincial and territorial responsibility, involvement in care plans varies across jurisdictions and is only mandatory in certain cases, such as in some provinces (e.g. Alberta and Quebec) and teaching hospitals (OECD, 2020[15]). In other countries such as Switzerland, service user involvement is considered as guidelines but it is not a requirement. In Japan medical practitioners are obliged to draw up an inpatient-care plan and deliver it to the patient or the family with adequate explanation of care, but not necessarily involve the service user in an active role in decision-making processes. In comparison, New Zealand introduced as a target in 2014 that at least 95% of the time, services users that have used mental health and addictions services are key decision-makers regarding the services they receive; data from 2019 has shown 76% of the people felt they were involved in decisions about their care (OECD, 2020[15]).
Countries are reshaping involuntary care and putting in place frameworks to protect patient rights, including under involuntary admission
Involuntary mental health care demands extremely careful management, and should not negate a people-centred approach. ‘Involuntary admission’, compulsory admission, or admission under a legal act such as a Mental Health Act, is a process in which an individual experiencing symptoms of severe mental illness who refuses to receive treatment is treated against their will, often in a hospital setting (OECD, 2014[24]). Usually, a person must be presenting a danger to themselves or others in order to be detained involuntarily.
Involuntary admission is a controversial topic, as it invades in the personal liberty and the right to choose and carries the risk of abuse. It limits an individual’s autonomy and freedom, which goes against the idea of enhancing people’s right to, and capacity to, actively manage their own care. Nonetheless, involuntary admission is broadly accepted as having a necessary place in contemporary mental health systems, and is seen as beneficial for people who are considered to suffer from impaired reasoning because of a mental illness, while at risk of hurting themselves or others. For people who decline to seek help on their own initiative, while continuing to suffer and cause significant harm to the lives of themselves or others, involuntary treatment is seen as a last resort measure.
In order to protect the individual’s safety while avoiding inappropriate use of compulsory admissions, mental health legislation determines under which conditions it is lawful to detain a person under mental health grounds. International human rights documents are available to provide context and guidance to develop legal frameworks on national level. These include the European Convention for the Protection of Human Rights and Fundamental Freedoms, and the United Nations Principles for the Protection of Persons with Mental Illness and Improvement of Mental Health Care (WHO, 1996[25]; United Nations, 1991[26]). The World Health Organization has developed ‘10 Basic Principles for Mental Health Law’ (WHO, 1996[25]) and Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care (United Nations, 1991[26]) which represent international agreements on standards of good practice.
More recently, an important shift has been made in the legal frameworks for practicing involuntary admission, through the Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2007). The Convention states that all persons possess decision-making capacity, which is contradictory with the substitute decision-making used in involuntary admissions. The Convention is one of the most widely endorsed treaties in history, with the support of 180 states.
Despite the efforts to internationally standardise strategies for legal frameworks for involuntary admission, rules and regulations are diverse across countries, depending on historical and cultural factors. This concerns both the stakeholders involved in involuntary admission, and the criteria for involuntary admission. As an example, the WHO has reported that in many low-income countries with few psychiatrists, it is difficult to require that two psychiatrists certify involuntary admission (WHO, 2003[27]). While in theory all member states of the European Union (EU) require psychiatrists to provide an assessment before admission to a psychiatric facility, regulations regarding emergency assessment differ between countries. France and some Federal States of Germany consider any physician to be able to make the emergency psychiatric assessment, whereas Austria, Greece, Ireland, The Netherlands, Portugal, Spain and the United Kingdom require a certified psychiatrist undertake the assessment. ‘Dangerousness’ criteria also vary per country, with it being sufficient for admission in Finland, Greece, Ireland, Portugal and the United Kingdom. On the other hand, in Italy, Spain and Sweden ‘dangerousness’ is not considered as a criterion for admission. The presence of a mental health condition is a requirement for admission in all countries, however the type and severity differ from wide diagnostic criteria, to specific symptoms of mental illness, such as psychosis (Zhang et al., 2015[28]).
The differences in legal frameworks across OECD countries is reflected in the variety of days in which a person can be held involuntarily under the Mental Health Care Act without review of a judge, ranging from 24 hours to 7 days (Figure 2.2). Slovenia, Mexico, Luxembourg and Belgium are allowed to hold people 24 hours or less before review of a judge. In Israel and the Czech Republic, people can be held involuntarily for up to seven days before review of a judge. Even on a national level, there might be differences in legislation regarding the involuntary admission. In several countries (Australia, Denmark, Ireland, Japan, Norway, the United Kingdom) the days that a person can be held involuntarily under the Mental Health Act without review of a judge varies, for example depending on the type of detention order, or by jurisdiction, or by assessment of an independent medical doctor (as is the case in Denmark) (see Box 2.2). In countries with federated governments such as Australia and Canada, legislation is decentralised, and states hold their own legal frameworks. However, it is difficult to draw comparisons between countries based on the number of days a person can be held involuntarily, as the duration of a hold says little about procedures that must be followed for involuntary admission to be approved, appealed, or upheld.
Source: OECD (2020[15]), OECD Mental Health Performance Benchmarking Data and Policy Questionnaires.
England (United Kingdom) – Mental Health Act
In England (United Kingdom), persons held involuntarily under the Mental Health Act have the right to appeal to an independent tribunal, chaired by a judge, which has the power to discharge. For short term detentions of up to 28 days under section 2 of the Act, a patient may apply to the tribunal within the first 14 days. For longer term detentions under section 3, a patient may apply within the first six months of the detention, and again within the next six months, and annually after that. Section 68 of the Act includes requirements for the managers of hospitals to refer patients to the Tribunal in cases where the patient has not made a referral – this is required six months after the start of the detention, but for longer term patients the requirement is three years since the tribunal last considered the case (one year if the patient is aged under 18).
Ireland – Mental Health Act 2001
In Ireland the Mental Health Act 2001 provides for rules about admission to psychiatric hospitals ('Approved Centres') and rules about the rights of psychiatric patients. On arrival at an Approved Centre, the person will be examined by a consultant psychiatrist. They may be detained for a maximum of 24 hours in the centre for this examination. If the psychiatrist believes the person is suffering from a mental disorder, they make an admission order to make them a patient of the centre. If they do not, they will be free to leave the centre. The admission order lasts for 21 days and the person can be kept in the centre for treatment for this time. A renewal order may extend this period by a further 3 months. This must be made by the consultant psychiatrist responsible and they must have examined the person in the week before making the order.
The Mental Health Commission (an independent body established under the Mental Health Act 2001) appoints mental health tribunals to automatically review all decisions to involuntarily detain patients or to extend the duration of such detentions under the provisions of the Mental Health Act 2001. Tribunals consist of three people - a consultant psychiatrist, a legal professional (practising solicitor or barrister) and a lay-person. The mental health tribunal must review the detention of the patient and make a decision within 21 days of the making of the admission order. If the tribunal is satisfied that the patient is suffering from a mental disorder and that the proper procedures have been followed, it affirms the order. If it is not satisfied, it revokes the order and directs that the patient be discharged.
Japan – Act on Mental Health and Welfare for the Persons with Mental Disorders
In Japan, the Act on Mental Health and Welfare for the Persons with Mental Disorders stipulates three types of involuntary admission. Article 29 provides that persons with mental disorders who have a high risk of self-mutilation or hurting someone else can be admitted by prefectural governor’s command, provided that two Designated Physicians of Mental Health give their consent. Article 33 provides that persons with mental disorders who have no risk of self-mutilation or hurting someone but are required hospitalisation for medical care and protection can be admitted without their own consent, provided that a Designated Physician of Mental Health and a family member of the patient give their consent. In these two cases, there is no limit for the duration of involuntary hospitalisation. Those patients are discharged when they no longer need inpatient care.
In an emergency situation, Article 29-2 provides that persons with mental disorders who have a high risk of self-mutilation or hurting someone can be admitted by prefectural governor’s command, provided one Designated Physician of Mental Health give his/her consent. Article 33-7 provides that persons with mental disorders who have no risk of self-mutilation or hurting someone but are required hospitalisation for medical care and protection can be admitted without their own and any of their family member’s consent, provided that a Designated Physician of Mental Health gives his/her consent. In these cases, patients can be held involuntarily for up to 72 hours. In addition to those involuntary admission cases, Article 21-4 provides that patients who are voluntarily admitted can be held for up to 72 hours even though they wish to be discharged, when deemed necessary by a Designated Physician of Mental Health. Pertaining to the cases of Article 33, 33-7 and 21-4, patients can be held involuntarily for up to 12 hours without consent of Designated Physicians of Mental Health, provided that a medical doctor with specifically prescribed experiences give his/her consent.(based on Article 21-4, 33-4 and 33-7-2).
Source: OECD (2020[15]), OECD Mental Health Performance Benchmarking Data and Policy Questionnaires.
Over recent years based on the CRPD convention, mental health frameworks around the globe have aimed to increase autonomy and choice for service users. For example, the Mental Health Act of British Columbia, Canada (2011) authorises mental health service users to give directives in advance that explicitly states their preferences and wishes in the event of mental health crisis. Northern Ireland has issued the Mental Capacity Act (2016) that is an example of fusion legislation. This legislation replaces the older Mental Health Order (1986) which utilises the presence of mental disorder and risk as criteria, and rather focuses on impairments of decision-making capacity and best interest as the only criteria to be used in involuntary admission (Lynch, Taggart and Campbell, 2017[29]; Sugiura et al., 2020[30]). The Netherlands has recently implemented policy changes concerning compulsory treatments, which came in force in the beginning of 2020 (Box 2.3), following in the footsteps of countries including England and Scotland which have adopted compulsory Community Treatment Orders (CTO) (OECD, 2014[24]).
Since January 2020, the Dutch Government has implemented a new law which allows compulsory treatment in the community (CTT) to be extended to patients’ homes, called Compulsory Treatment at Home (CTH). This legislation implicates that patients can be legally compelled to undergo treatment at home (De Wet verplichte geestelijke gezondheidszorg – Wvggz).
In an attempt to move away from involuntary admission in psychiatric institutions, CCT is a less restrictive alternative to involuntary admission. CTT can be put in place when a person is discharged from involuntary admission, which is referred to as conditional charge. It allows people with psychiatric illness to receive care in their community when living at home. There is possibility to be readmitted to psychiatric hospitals if the patients’ needs are not met or if the patient’s condition deteriorates.
The new Dutch mental health law Compulsory Treatment at Home introduces new powers for health professionals to compel treatment, such as physical restraint and medication.
The implementation of this law raises discussions and seems to go against the efforts of reducing coercion, in line with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). At this point in time, there is uncertainty on how CTH will work in practice. Disadvantages of this law would be the limitation of service user’s autonomy and putting a burden on the service users’ social network. Moreover, there are concerns about practical implications such as the administration of force medication and the use of compulsion at home. However, this law could lead to significant increase of quality of life for service users. It could prevent compulsory admissions, which can be very traumatising. Furthermore, it could be a useful method to reduce wait times to receive treatment and early identification of relapse (Kisely, 2016[31]; Rugkåsa, 2016[32]; De Waardt et al., 2020[33]).
Additionally, from 1 January 2020, a reform is in effect which allows for increased involvement in decision-making processes of both family members or other carers and service users when it concerns involuntary assessment. Family members or carers are able to activate a process concerning involuntary admission and have a share in decision-making processes about the care plans. The service user is able to decide on care plans as well and is encouraged to develop a care plan which states their preferences and will in case of a mental health crisis.
Is mental health care respectful and inclusive of the individual, carer and family?
Patient-reported measures show some signs of gaps between the widely held policy principle of person-centred mental health care, and the experience of mental health service users
OECD countries put an inclusive approach at the centre of their mental health strategies and plans and included a respectful and inclusive approach as one of the sub-principles of an individual-focused approach to mental health care in the OECD Mental Health Performance Framework (OECD, 2019[12]). However, when mental health service users give feedback on the care they have received it reveals some gaps between the widely held policy principle of person-centred mental health care, and the experience of mental health service users.
In 2020, as in 2016, responses to the the Commonwealth Fund International Health Policy Survey in 11 countries showed that people who reported having a mental health problem were less likely to report being treated with courtesy and respect during a hospital stay than people without a mental health problem (includes hospital stays for any health condition, not only mental health care). On average, there was a 10 percentage point gap between people who did not report a mental health problem and reported being treated with courtesy and respect, and people with a mental health problem. In Germany, the Netherlands, the United States, and Canada the gap exceeded 10 percentage points, and in the United Kingdom it was 20.3 percentage points (Figure 2.3). Overall, just under 20% of people who reported having a mental health problem didn’t report being treated with courtesy and respect by doctors and nurses during hospitalisation. People who reported that they had depression, anxiety, or another mental health problem are also on average more than twice as likely to report receipt of conflicting information from health care professionals (OECD, 2019[34]).
Note: People ‘with mental health problems’ includes adults who responded “yes” to “Have you ever been told by a doctor that you have depression, anxiety or other mental health problems”, and their responses to other survey questions. Sample sizes and survey response rates differ between countries, and results may be based on small samples. It is not possible to distinguish between individuals who were suffering from a mental health problem at the time of the survey, and those who had experienced mental ill-health in the past but have since recovered, nor whether the hospitalisation was for a mental health problem. Cultural and linguistic differences in how the question was interpreted could also influence responses. Results have not been risk-adjusted for co-morbidities and socio-economic status.
Source: OECD calculations based on the Commonwealth Fund International Health Policy Survey 2020 (forthcoming[35]), https://www.commonwealthfund.org/series/international-health-policy-surveys.
Beyond this small international survey, it is difficult to assess in a cross-country comparable way the extent to which mental health care users – or carers or family members – judged the care they received to be respectful and inclusive. Several countries do have national or regional mental health service user surveys which give some insights into the experiences mental health service users have of their care, but cannot be compared directly across countries.
However, a number of countries have large-scale national surveys of mental health service users. New Zealand’s “Ngā Poutama: consumer, family and whānau experience survey’’, last administered from September to November 2019, is used monitor and improve the quality and safety of services, and complement the findings of a staff survey carried out in 2018 (Health Quality & Safety Commission, 2020[36]). The survey found that 59% of service users reported having been treated with respect, which staff mostly explained things in a way that was easy to understand (59%), and a support person was present during sessions with staff more often than not (53%). In England, the Community mental health survey in 2020 which received feedback from people between September and November 2019 (Care Quality Commission, 2020[37]). When it came to involvement in care, and communication, the survey respondents had mixed experiences; 59% of respondents said they were ‘definitely’ given enough time to discuss their needs and treatment, 53% who had discussed a care plan with services were ‘definitely’ involved as much as they wanted to be in the planning of their care, 50% of those who had received NHS therapies in the last 12 months were ‘definitely’ involved as much as they wanted to be in deciding which therapies to use (ibid). In the same survey, 28% of people indicated that they had not been told who is in charge of organising their care and 41% of people who had been receiving medicines had not had the purpose of discussed with them fully (ibid).
In Australia, the Experience of Service (YES) survey has been developed for use nationwide, and is currently in place in three states or territories in Australia (New South Wales, Queensland, Victoria). The YES survey can be administered in inpatient and community care settings. In New South Wales mental health service users are offered the survey during every hospital stay or episode of community care, while in Queensland and Victoria the survey is undertaken at particular points during the year. In 2018-19, in admitted care YES survey mostly reported a positive experience of service (70.1% of respondents in NSW, 53.0% in Vic and 53.7% in Qld), with more positive responses amongst those those who had used non-admitted care (80.9% of respondents in Qld, 78.7% in NSW and 76.5% in Vic, reported a positive experience of service) (Australian Institute of Health and Welfare, 2020[38]).
The significant economic role of carers and family members in mental health care must be recognised
Over the last decades, the responsibilities for carers and family members for people with mental ill-health are generally reported to have increased, due to factors such as the shift towards community care and in general shorter hospital stays. This task, often unpaid, is often referred to as the ‘carer burden’. Carers support is highly beneficial for the person with mental ill-health, which can include emotional, social and practical support for people with a mental illness (Johnson, 2016[39]).
However, carers often struggle to get the help and support that they need, both for undertaking their caring responsibilities, and for their own mental and physical health needs. Caring can leave individuals at increased risk of negative outcomes such as social isolation, lower quality of life and stress related illness; 27% of carers for people with mental health conditions reported having depression or an anxiety disorder, 26% reported back pain, and only 15% reported having some paid compensation, and only 33% reported receiving some form of additional support (EUFAMI, 2020[40]). Increasingly, countries are recognising the efforts of carers in mental illness and the burden that comes with it, but many improvements are yet to be made (Visa and Harvey, 2019[41]; Bradley and Green, 2018[42]). One of the organisations that tries to give carers a voice is the European Federation of Associations of Families of People with Mental Illness (Box 2.4).
The European Federation of Associations of Families of People with Mental Illness (EUFAMI) is a non-profit organisation with an ongoing commitment to improving care and welfare for people affected by mental ill-health. Together with the London School of Economics and Political Science/Policy and Evaluation Centre they undertook a 2-year research study, which was completed in September 2020, measuring the ‘cost of caring’.
This study on the ‘Cost of Caring’ aimed to better understand of the economic impact of informal care and estimate the economic value of informal caring. Data was received from eight countries, respectively Canada, Denmark, Ireland, Italy, France, Malta, Spain and the United Kingdom. Dimensions of care covered were the quality of life of carers, time spent caring, value of caring, a carer’s use of health services, labour participation of carers, and income.
A key finding from the research is the average length of the working week of carers. On average, informal family carers provide more than 43 hours of care every week, and 41% of carers also have to balance caring with formal employment. Also, each hour of caring time is valued by carers to be between EUR 23.62 and EUR 28.75. This indicates that the economic value of informal care is substantial – rising to an annual estimate of between EUR 61 026 and EUR 74 907. For carers who live with the person they support, who tend to spend longer hours working, the mean weakly value of the unpaid caring they provide is estimated at EUR 1 758.
It is important to stress that this study finds that the economic costs – and the unpaid labour undertaken by carers – is just one dimension of understanding the value of caring. Loneliness (carers report a mean loneliness score of 5.88, above typical scores between 2 and 4 for European populations), long term negative impacts on career progression for those with significant caring responsibilities (43% of carers reported they had reduced their work ours due to caring responsibilities, by an average 19.49 hours per week), and associated stigma can all be significant additional burdens on those caring for people with mental health conditions. The study found that overall, quality of life for carers is 40% lower than if they were not caring; 82% of carers gave up an average of 12 hours of leisure time per week, because of their caring responsibilities.
Source: EUFAMI (2020[40]), The Cost of Caring, http://eufami.org/resources/the-value-of-caring-resources-are-now-available/.
Are care and treatment tailored to individual needs and preferences?
Offering service users choice is key to tailoring care to individual needs and preferences, but choice is not possible in most mental health service settings
Stimulating choice and co-design of treatment can help to deliver appropriate or preferred care for the service user. Giving a choice of services or treatment options helps to go beyond the one-size-fits all approach, and is expected to create better alignment between what service users want and what kind of services are provided (Gopalkrishnan and Babacan, 2015[43]; Piat, Seida and Padgett, 2020[44]). Additionally, involving services users in choosing their treatment options has been shown to result in positive outcomes such as improved relationships with therapists, increased self-agency and motivation in one’s personal recovery process (Oedegaard et al., 2020[45]). Policy agendas have increasingly promoted the involvement of service users and carers in their personal care plans, by giving them a choice about what treatment to receive and which provider to receive care from (Carlos Santos and Cutcliffe, 2018[18]).
A degree choice, for instance in the type of service or care, or the service setting, is available or sometimes available in 25 of the 29 countries which responded to the OECD Mental Health Benchmarking Policy Questionnaire, but often this depends on the care setting, region or local area, or in principle is available but this does not always happen (Table 2.3).
There is variation in what this means in practice, both across and within countries, and even if choice of provider or service type is offered in principle, it may well not be accessible in practice. For example, in some areas of Canada, mental health care services require that “each client’s preferences and options for services are discussed as part of the assessment, in partnership with the client and family” (OECD, 2020[15]). These requirements are mandatory in certain jurisdictions and funders (e.g. provinces of Alberta and Quebec), and certain care settings (e.g. teaching hospitals in across the country), but in other settings and jurisdictions the implementation of such practices are voluntary. In Denmark, entitlement to timely hospital care means that if the Danish region cannot ensure that treatment will be initiated within 30 days, patients have the right to a so called ‘extended free choice of hospital’. This means that patients may choose to go to a private hospital in Denmark. Patients also have the right to a public or private hospital treatment abroad.
In England, regulations enabling people to choose their mental health provider when referred to secondary mental health services were introduced in 2014, including legal entitlement to choice of mental health care provider, and mental health care team (NHS England, 2018[46]) However, periodic monitoring of this choice shows patients do not exercise it in the majority of cases (OECD, 2020[15]). In 2019, 50% of community mental health care users in England said that they were ‘definitely’ involved as much as they wanted to be in deciding which therapies to use (Care Quality Commission, 2020[37]). The National Institute for Health and Care Excellence in the United Kingdom has developed guidance and tools to promote shared decision making in mental health care plans (NICE, 2020[47]). They have developed patient decisions aids and other decision support tools to give guidance, while working together with over 40 organisations to improve shared decision making in mental health care plans. In the Netherlands, choosing a mental health care provider is supported through a website which makes it possible to find mental health care providers by mental health condition. This website additionally shows valuable information such as waiting times, religious preferences and possibilities for carer involvement (Kiezenindeggz.nl, 2020[48]).
Deinstitutionalisation expands the range of choice for people in need of mental health care
Contemporary mental health policies have made the change toward a system which promotes the autonomy of the individual by focusing on deinstitutionalisation and scaling up community care facilities for mental health care services. The Quality Kit, a policy instrument developed by the WHO based on the CRPD, recommends that countries progressively close down psychiatric long-term inpatient facilities and establish community-based services and integrate mental health into primary care services and the services offered by general hospitals. Psychiatric and other long-stay inpatient facilities have long been associated with poor-quality care and human rights violations (WHO, 2012[49]).
Deinstitutionalization is seen as essential for people-centred care systems, facilitating choice for service users by providing the highest attainable level of independence possible and increasing involved decision making in care (Thornicroft and Tansella, 2013[50]). Community care helps to improve the capacity to live and function optimally within their communities for service users, without disrupting their fulfilment of life obligations such as to family, friends, neighbours and work (Abdulmalik and Thornicroft, 2016[51]). Greater deinstitutionalisation is associated with higher quality of care in longer term psychiatric and social care facilities, and has been found to be cost-effective (Winkler et al., 2018[52]), and not associated with negative outcomes such as homelessness, imprisonment or suicides (Winkler et al., 2016[53]).
A cross-sectional study among psychiatric facilities in Bulgaria, Czech Republic, Germany, Greece, Italy, The Netherlands, Poland, Portugal, Spain and the United Kingdom showed that greater deinstitutionalisation is associated with higher ratings of self-management and autonomy, higher availability of treatments and interventions and better build therapeutic environment (Taylor Salisbury, Killaspy and King, 2017[54]).
Most mental health systems in OECD countries have shifted, or are shifting, their mental health systems towards primarily delivering services in community based settings (Knapp et al., 2011[55]). There has been a general decrease of inpatient beds among OECD countries, a trend which began in the 1960s in some countries; the rate of psychiatric beds per 1 000 population has fallen from 0.86 in 2000 to 0.69 in 2018. The magnitude of this shift varies per country, with some countries practicing the majority of care in outpatient centres and others relying more on inpatient facilities. Some countries have moved at a much slower pace, notably in central and eastern Europe, and Central Asia (Aliev et al., 2021[56]; Winkler et al., 2017[57]). As an example, in Japan, inpatient care still holds significant importance for mental health care which is reflected in the number of inpatient beds available in the population, 2.61 per 1 000 in 2018. Among OECD countries, Korea has been the only country to increase the number of inpatient beds over the recent years, from an average 0.65 per 1 000 population in 2000 to 1.26 per 1 000 in 2018, though this most recent rate does represent a decline from a peak of 1.31 in 2017 (OECD, 2021[58]).
A shift towards more community-based models of care can be a way to increase service user choice in the mental health system. In recent years, Norway has increased emphasis on municipal health care services, moving away from large psychiatric hospitals to more locally based psychiatric services. A qualitative study by Klausen and colleagues (2017[59]) shows increased involvement in decision making when receiving community mental health care. This led to positive outcomes. People felt heard and seen and were more willing to be treated. Moreover, this study highlighted barriers for shared decision-making specific to mental health care in inpatient facilities. Service users felt they were increasingly able to be involved in their own care in community mental health care centres compared to inpatient psychiatric hospitals, because of increased silence and calm in community centres compared to inpatient centres (Klausen et al., 2017[59]). A study in the United Kingdom about shared decision-making following involuntary admission to mental health hospitals found similar results, reporting as a main barrier for shared-decision making challenges in communication, noisy and busy wards which complicates one-to-one meetings (Giacco et al., 2018[60]). Slovenia is also moving mental health care more to primary health care level into newly developed structures of community mental health centres at local level, that are being developed within the ‘Resolution of mental health programme 2018-2028’.
Can OECD countries deliver individual-centred mental health services which are culturally, age and gender appropriate?
Mental health services should be adapted to meet the needs of key population groups
Mental health status, and mental health system needs, are not homogenous across populations, but instead differ by age, gender, culture or ethnicity, sexual orientation as well as by a wide range of other socially important determinants. Mental health services and policies must take stock of the different needs of key population groups, especially for population groups which may be especially vulnerable to experiencing mental ill-health, or who may need particular adaptations to mental health service design in order to get the greatest benefit and best outcomes.
Several population groups are identified as being at greater risk of developing mental health problems, such as anxiety, depression and suicide ideation (Liu et al., 2019[61]; CDC, 2019[62]). These vulnerabilities vary across countries, but there are some patterns. In Australia, Canada, New Zealand and the United States and indeed worldwide, Indigenous populations have higher rates of suicide and psychological distress, suffering from symptoms of anxiety and depression at a higher rate than the non-Indigenous population (Hajizadeh, Bombay and Asada, 2019[63]; Hatcher, Crawford and Coupe, 2017[64]) Indigenous Australians shows rates of anxiety and depression between 50% and three times as high compared to the non-Indigenous population (Jorm et al., 2012[65]). Suicide rates are twice as high compared to the non-Indigenous population, and four times as high for youth (Tighe et al., 2017[66]).
Suicide rates among the Inuit, one of the three distinct Indigenous groups in Canada, are among the highest in the world and up to ten times higher than the average suicide rate in Canada (Harder et al., 2012[67]; Kral, 2016[68]) At the same time, a 2019 paper examining suicide mortality among First Nations, Métis, and Inuit people in Canada found that there was considerable heterogeneity across communities; while suicide rates amongst some communities were high, just over 60% of First Nations bands had experienced no suicides between 2011 and 2016, and among the 50 Inuit communities, 11 communities had a suicide rate of zero between 2011 and 2016 (Kumar and Tjepkema, 2019[69]). In addition, this paper identified that socio-economic factors such as household income, labour force participation, education level and geographical factors accounted for 78% of the disparity in suicide deaths amongst First Nations people, 37% amongst Métis, and 40% amongst Inuit people (ibid). Such findings underscore the importance of first, promoting the availability of data that can be used to understand drivers of mental ill-health and suicide risks, and second, the importance of taking an intersectional approach to meeting communities’ needs (see also Chapter 5).
Gender is also found to play a significant role in the prevalence of mental ill-health. In youth, boys are found to exhibit more externalizing behaviours such as ADHD, physical aggression and conduct disorders. Additionally, boys are found to have three to ten times more likely than girls to experience psychopathology during their younger developmental years. In adolescence, boys continue to outnumber physical aggression and violence. Girls, however, are twice as likely to become anxious or depressed. Adolescent boys are four times as likely than adolescent girls to complete suicide (Vander Stoep et al., 2011[70]) .
Patterns of mental health services use also differ within populations; certain population groups face greater difficulties accessing services, and poorer treatment outcomes, compared to their peers (Sanchez et al., 2016[71]; SAMHSA, 2015[72]). A study from the Substance Abuse and Mental Health Service Administration in the United States found that there were some differences in the rate of mental illness amongst different racial/ethnic groups, but bigger differences were found in patterns of service use. Certain ethnic/racial groups were less likely to use mental health services when they had a mental illness thank others (Figure 2.4). Specifically, Black and African American populations, Asian populations, and Hispanic populations were less likely to use mental health services than White, American Indian or Alaska Native populations, or people with Two or More Races.
Source: SAMHSA, Center for Behavioral Health Statistics and Quality, National Survey on Drug Use and Health, 2008-12 (2008-10 Data – Revised March 2012) reported in SAMHSA (2015[72]), Substance Abuse and Mental Health Service Administration, Racial/Ethnic Differences in Mental Health Service Use among Adults, https://www.samhsa.gov/data/sites/default/files/MHServicesUseAmongAdults/MHServicesUseAmongAdults.pdf.
There is not necessarily a consistent pattern across countries in terms of the mental health needs of key populations, and service use patterns. In Australia for instance Indigenous Australians – who have higher rates of mental distress than non-Indigenous Australians – also access public mental health services at a higher rate than non-Indigenous Australians (Australian Institute of Health and Welfare, 2020[73]). Indigenous Australians access private services, which includes GPs, at around the same rate as other Australians; given the higher level of mental distress found amongst Indigenous Australians, this likely reflects an access gap.
What is critically important is that countries take stock of the diversity of mental health needs and service preferences within their population, and take steps to respond. At present, only a few countries break down their mental health data by (nationally defined) population group. As part of OECD Mental Health Performance Benchmarking Data and Policy Questionnaires (2020[15]) countries were asked to report mental health data (for instance service use rates, admissions, death by suicide) by nationally defined key or ‘vulnerable’ group. Only four countries, Australia, Canada, England, and New Zealand were able to report data broken down by different population groups (other than age) (OECD, 2020[15]). Including questions on the particular needs or preferences of key population groups in mental health service user experience surveys can also be extremely valuable and informative, even if it points to shortcomings. In New Zealand’s mental health service user survey, the lowest rate of positive responses was for questions about cultural and spiritual needs being met. Notably, only 14% reported staff using the reo Māori during sessions, as appropriate, 15% having access to traditional Māori healing practices, as appropriate and 18% access to kaumātua, kuia or other cultural advisors, as appropriate (Health Quality and Safety Commission New Zealand, 2018[74]).
Moreover, the COVID-19 pandemic has disproportionally impacted mental health among certain population groups and has enlarged pre-exiting differences in some populations that are at risk of developing mental ill-health (OECD, 2021[75]; Winkler et al., 2020[76]). A study from the NHS in England showed that gender interacted as a predictor of mental health deterioration, and also that Black, Asian and minority ethnic (BAME) males experienced a higher deterioration in mental health compared to British White individuals. This drop in the mental health status of BAME men was very similar to the drop in both BAME women and British White women (Proto and Quintana-Domeque, 2020[77]).
Many countries have strategies in place to support the mental health of key population groups
Many countries may have introduced mental health strategies for priority population groups (Figure 2.5). However, as detailed mental health outcomes remain disproportionately poorer for some population groups, which points to a need to further increase, or at least remain committed to, scaling-up appropriate support and services designed for and with minority and priority groups.
Note: Responses to the question ‘Do you have a specific national or sub-national mental health strategy for different vulnerable population groups? E.g. Older adults, First nation people, ethnic minorities, LGBTQI groups’. While this term appeared to be easy to understand for questionnaire respondents, the term ‘vulnerable population’ can over-emphasise weakness rather than action and empowerment, and imply that all individual members of a given population are vulnerable.
Source: OECD (2020[15]), OECD Mental Health Performance Benchmarking Data and Policy Questionnaires.
For example, for key population groups, the provision of accessible, co-produced services can have a significant positive impact. Fostering a supportive community with focus on local culture, such as support by social or familial network, connection to culture, development of self-identity are all related with better mental health outcomes in Indigenous populations, resulting in less suicidal ideation (Harder et al., 2012[67]; Hatcher, Crawford and Coupe, 2017[64]; Kral, 2016[68]). Canada has pursued this approach with “Culture as a Treatment””, where mental health agencies serve specific cultural practices such as talking circles, pipe ceremonies and smudging and the jointly developed the First Nations Mental Wellness Continuum Framework (Gone, 2013[78]). In Australia, Indigenous mental health policies focus on self- determination and community governance, reconnection and community life to enhance well-being and prevent suicide (Marel et al., 2016[79]).
To take one further example, OECD countries have taken some initiatives to create gender specific care, however this remains scarce and opportunities for improvement exist. In England, there have been guidelines developed to advice on clinical management of mental health services for women who have experienced problems in antenatal or postnatal period. The guidelines cover mental ill health such as depression, anxiety disorders, eating disorders, drug- and alcohol- use disorders and severe mental illness. The guidelines are developed to promote early detection and good management of mental health problems to improve women’s quality of life during pregnancy and in the year after giving birth (National Institute for Health and (NICE), 2014[80]). Finland has developed a preventative strategy to recognise that suicide was particularly high amongst young men, which led to the development of the “Time Out! Back on the track” (Aikalisä! Elämä raitelleen) initiative in 2004, which promoted social inclusion amongst vulnerable men. Two-thirds of participants reported that the participation in the programme was worth wile, while about 60% considered it had improved their life situation (Appelqvist-Schmidlechner et al., 2012[81]).
Does the mental health system empower the individual to realise his or her own potential and contribute to society?
That mental health services ‘empower the individual to realise his or her own potential and contribute to society’ is included as one of the dimensions of an individual-focused mental health system in the OECD Mental Health Performance Framework. This sub-principle is difficult to measure, as it demands that services adapt to support the individual in realising the contribution that best suits their potential.
However, if employment or educational outcomes are taken as one dimension of the individual realising his or her own potential and contributing to society, it is clear that there are some shortcomings. Fragmented information infrastructures make it difficult to assess the extent to which mental health services are integrated or connected with employment or educational settings, and/or include employment or educational outcomes, but Chapter 4 of this report clearly highlights that mental health services and employment and educational services are not systematically integrated in all countries. Nor, as Figure 2.1 in this chapter shows are employment, educational, or other opportunities systematically included as an outcome objective of mental health care planning. Only six countries (Belgium, Iceland, Israel, Italy, Korea, Luxembourg) said that discussing employment, educational, or other opportunities was a requirement in service user care plans, with a further 12 countries saying that this should be the case but didn’t always happen, or depended on the care setting.
Some service user-reported data suggests challenges may remain around including educational or employment outcomes in mental health services. One service user survey in Canada found that mental health inpatient responses in the affirmative to the question, “Are staff helping you with your employment and/or education goals?” was 52.2% and outpatient responses to the questions “Are you receiving support with income-related issues” and “Are staff helping you with your housing goals?” were rated 58.2% and 59.3%, respectively (CAMH, 2014[82]). In England, a community mental health care service user survey found that 36% of people felt they had not had support with their physical health needs, 43% said they did not receive help or advice in finding support with financial advice or benefits and 43% of people did not get help or advice in finding support for keeping or finding paid or voluntary work, but would have liked this help (Care Quality Commission, 2020[37]).
OECD countries increasingly recognise how important it is to equip health systems, and mental health systems, with tools to move towards a person-centred system. However, although attention has increased in many mental health systems people-centredness is at best inconsistent, and at worst tokenistic, and there is still a lot to improve. There are numerous promising policies to promote and integrated individual-centred care in place in OECD countries, which should be adopted more widely. More systematic consultation of mental health service users should be a priority in all OECD countries – through surveys of service user experience of the mental health care system, on the system priorities of service users, family and carers, and through the use of patient-reported measures of outcome and experiences at the service level. Peer-delivered services or co-designed services, which have been adopted in a few OECD countries but could be developed in many more, also hold great potential for putting the service user perspective at the heart of mental health service design and delivery.
Moving from consultation to co-production is key for increasing person-centredness of mental health policy and services
To secure more person-centred mental health systems, there is a need to move from light-touch consultation with service users, to leadership in the sector by mental health service users. This means working with – or having leadership from – people with lived experience of mental health service use in designing mental health services, and in delivering services. Countries including England and Ireland have begun this process, elevating the voices of mental health service users and promoting co-produced mental health services as a key way to enhance person-centredness in mental health care. This process can be adopted at a system-wide level, as well as at the individual service or even ward level. One acute mental health ward in England used a process of co-design between recent service-users and health workers on the ward to change some key aspects of the way the ward was run, including the removal of an existing triage system and improving feedback from service users to staff (Springham and Robert, 2015[83]). After this process, the number of complaints on the ward dropped significantly, and were lower than two neighbouring wards. Ireland’s Health Services (HSE) recognises the value of personal lived mental health experience in developing more recovery oriented services, and has developed a structure – the office of Mental Health Engagement and Recovery – to engage service users and family members/carer’s in the design delivery and evaluation of services. A key part of this is the establishment of 35 service user local engagement service improvement forums to involve service users and family carers (OECD, 2020[15]; HSE, 2019[84]).
Experiences of and outcomes from mental health services don’t just vary between OECD countries, they also vary within them. Individuals’ age, gender, ethnicity, socio-economic status, and sexual orientation can all intersect with their mental health needs and service preferences and can all have an impact on experiences and outcomes from mental health care. Though many countries may have strategies for priority population groups, the comparatively poor outcomes for such groups points to a need to further increase, or at least remain committed to, scaling-up appropriate support and services designed for and with minority and priority groups. Furthermore, countries need to go beyond strategies focused on priority groups and towards accessible, tailored services. Canada and Australia have focused on co-produced strategies and services with Indigenous populations as a way of improving mental health outcomes for these key populations (see Box 2.5).
Both Australia and Canada have focused on co-produced strategies and services to improve the effectiveness of mental health care for Indigenous populations, which have been found effective. For key population groups, countries need to go beyond strategies focused on priority groups and towards accessible, co-produced services. Fostering a supportive community with focus on local culture, such as support by social or familial network, connection to culture, development of self-identity are all related with better mental health outcomes in Indigenous populations, resulting in less suicidal ideation (Harder et al., 2012[67]; Hatcher, Crawford and Coupe, 2017[64]; Tighe et al., 2017[66]). Canada has pursued this approach with “Culture as a Treatment””, where mental health agencies serve specific cultural practices such as talking circles, pipe ceremonies and smudging (Gone, 2013[78]), and the jointly developed the First Nations Mental Wellness Continuum Framework. In Australia, Indigenous mental health policies focus on self-determination and community governance, reconnection and community life to enhance emotional well-being for Indigenous communities (Dudgeon et al., 2014[85]).
As response to the high suicide rates amongst the First Nations and Inuit communities, Canada has developed a targeted mental health strategy focusing on suicide prevention. Policy makers and researchers recognised the importance of community-based approaches in suicide prevention and mental wellness activities, given that that the First Nation and Inuit populations know what is best for their youth. Together, the Aboriginal populations and the Canadian Government established “A National Aboriginal Youth Suicide Prevention Strategy (NAYSPS)” in 2005-10. This community-driven strategy is based on four elements of preventions; primary, secondary and tertiary prevention and knowledge-based development to help ensure individual, family and community mental health. Anticipated outcomes are improved health status of Aboriginal youth, families and communities; which it is hoped will lead to reduction in suicide rates on long term. Given that Aboriginal youth suicide is a complex issue, the government foresees it will take years to effectively assess the rates of Aboriginal youth suicide (Health Canada, 2013[86]).
The Australian Government is supporting Indigenous suicide prevention by providing AUD 4.5 million to support Gayaa Dhuwi (Proud Spirit) Australia as a national Aboriginal and Torres Strait Islander leadership body to help Australia’s health system provide culturally safe and appropriate care. Further funding is included for young Indigenous leaders to participate in place-based cultural programs, a specialised centre for mental wellness of children and adolescents exposed to childhood trauma, culturally adapted compassion-focused psychological therapies, and the not-for-profit organisation Red Dust, which seeks to improve the health and well-being of disadvantaged youth in remote communities, for their work in the Northern Territory (Australian Government - Department of Health, 2019[87]).
Peer-delivered services are of value for creating appropriate people-centred care
Peer-delivered services are seen as an important driver for embedding a person-centred care approach. Peer support is as increasingly popular as a recovery-oriented service that has the potential to improve patient well-being, reduce relapse and decrease the burden on formal acute mental health services (Valenstein & Pfeiffer, 2018). Peer support was initially built on the idea of voluntary effort to contribute to practice standards, but has led to the development of professional, funded positions in mental health care. Increasingly, peer supporter workers have been delivering care informed by their own experiences. Examples of peer-delivered services in mental health care can be peer listening (active listening from a trained peer supporter); peer education; (peers educating others on specific topics, such as coping with depression), peer tutoring or mentoring (including academic or social learning, or a ‘buddy’ system); or peer mediation (where trained peer mediators help with formal or informal conflict resolution) (Mental Health Foundation, 2021[88]).
Some OECD countries are actively promoting the involvement of mental health service users, or former service users, in the delivery of mental health services. In England, the mental health strategy “No Health Without Mental Health” called for staff with experience and expertise to deliver individualised mental health care in resource-limited settings (Department of Health and Social Care, 2011[89]). Since then, England has been actively pursuing research into more extensive use of peer workers (people with personal experience of mental health issues) within the mental health system following evidence that peer support can bring benefits such as enhanced feeling of empowerment, better social support and increased personal recovery (Gillard, Edwards, Gibson, Owen, & Wright, 2013). In England’s Mental Health Implementation Plan, the growth of peer support workers is planned for at least the period up until 2024; under this strategy peer support workers England has a national programme to develop new peer support roles, peer support workers will work across the mental health system and across different mental health conditions, and growing supervisor capacity and capability is a key objective (NHS, 2019[90]). In Ireland, an evaluation of the impact on Peer Support Worker users found overwhelmingly positive feedback from mental health service users (Box 2.6). Peer support was recognised also in a Slovenian Delphi study as being of particular importance, and especially urgent given the COVID-19 crisis.
In 2017 in Ireland, 26 Peer Support Workers were employed in Mental Health Services across 11 countries, to support service users with their recovery. Peer Support Workers were working as members of multidisciplinary teams in the community (Community Mental Health Teams, CMHT), rehab and (CMHT), rehab and recovery teams, acute wards, and early intervention psychosis services.
This programme was evaluated in 2019, and found that a feedback from service users was very positive:
all of the service users who were surveyed stated that they liked receiving peer support (32% quite a lot; 68% very much);
service users said that Peer Support Workers had a positive impact on their experience of mental health service (53% quite a lot; 47% very much);
all service users found that receiving peer support was beneficial to their recovery (41% quite a lot; 59% very much);
and felt that peer support workers empowered and supported them on their recovery journey (3% somewhat; 39% quite a lot; 58% very much);
76% of service users stated they are more active in their community as a result.
Mental health service providers also had a very positive view of the impact of Peer Support Workers:
Service providers felt that Peer Support Workers are having a positive impact on service users’ experience of Mental Health Services (76% yes; 23% somewhat), and were making a difference to service users (78% yes; 18% somewhat).
Source: Hunt and Byrne (2019[91]), Peer Support Workers in Mental Health Services, HSE Health Services, https://www.researchgate.net/publication/340716658_The_Impact_of_Peer_Support_Workers_in_Mental_Health_Services.
Peer led interventions can be of particular value for enhancing mental support for key population groups, such as Indigenous youth and LGBTQ+ communities. Peer support can help to alleviate distress and improve access to affirmative support and contribute to positive mental health outcomes. In Canada, New Zealand, Australia and the United States Governments have developed strategies to improve the health outcomes of Indigenous youth. Youth peer-led interventions have become increasingly popular to share health information with young people and has appeared to be well suited to the Indigenous community context. Within the youth communities, this included sites of interaction such as schools, sporting, and designated youth spaces. Although proof the effectiveness of peer led interventions are still in their preliminary stages, peer-led interventions have been considered particularly useful for educating young people about sensitive topics which can cause embarrassment or fear when discussed with adults, including sexual health and substance use (Vujcich et al., 2018[92]). The United States has also explored the use of peer advocates for LGBTQ communities living in rural communities, through the use of “LGBTQ peer advocate intervention” which is a programme to enhance services and social support for rural LGBTQ persons. Evaluation of this programme is still forthcoming (Willging et al., 2016[93]).
More widespread use of patient-reported measures will be critical for driving more people-centred systems
Seeking and reporting the views of individuals with lived experience of mental illness, people who use mental health services, and their families and carers, is a key method of making mental health systems increasingly people-centred. As this chapter has shown, service users’ own views of their experience of care is critical to embedding a more person-centred approach, and can garner illuminating insights. However, routinely collecting patient reported outcomes and experiences remain the exception among OECD countries (OECD, 2020[15]). Mental health data availability is still dominated by inputs and resources, for example by number of beds or service contacts. While important, this information does not bring significant insights into whether care is person-centred and what it delivers to the patient.
Collecting patient-reported information of experiences of care is a way to ensure the delivery of person-centred care, giving insight in peoples experiences and outcomes of care (Santana et al., 2018[94]). Measuring a wide range of constructs related to outcomes of care such as daily functioning, mental health and disease burden and experiences of care will provide information that shows how care systems are truly delivering care that aligns with people’s needs and expectations. Patient-reported measures give insights where person-centred care delivered and where there remain gaps.
Patient-reported indicators measure health status or the experience of receiving health care from the patients’ perspective and are essential to ensure services are responsive to people’s needs and preferences and improve the quality and outcomes of an individual’s mental health. Patient- reported indicators are also particularly useful for promoting and evaluating people-centred care (OECD, 2019[34]). They are defined as:
Patient-reported experience measures (PREMs), which are used to obtain patients’ views and observations on aspects of health care services they have received (e.g. communication with nurses and doctors, staff responsiveness, discharge and care co-ordination); whereas
Patient-reported outcome measures (PROMs), which provide the patient’s perspective on their health status (e.g. symptom burden, side effects, psychological well-being and social functioning) (de Bienassis et al., 2021[20]; de Bienassis et al., 2021[95]).
The systematic use of outcomes frameworks to measure patient-reported measures is still relatively new, but could now stand to be accelerated across OECD countries (Table 2.4).
Using information on both patient experiences and outcomes enables a broader understanding of health system performance from the service users’ perspective. PREMs and PROMs are complementary and are meant to be used together to capture a more complete picture of the patient journey. The OECD has started to speed up the uptake of patient-reported measures by launching the Patient-Reported Indicators Surveys which includes the measurement of patient reported measures in mental health care (Box 2.7).
In 2017 the OECD launched the Patient-Reported Indicators Surveys (PaRIS) to accelerate patient-reported measures to make systems more people-centred. Its aim is to systematically collect data on what matters most to patients. The PaRIS-project is focusing on standardising patient-reported indicators in fields where indicators of health care quality and outcomes are already used. This includes hip and knee replacements, breast cancer and mental health.
As part of the PaRIS initiative, the OECD launched the PaRIS Working Group on Patient-Reported Measures for Mental Health in May 2018. This Working Group, made up of experts from across OECD countries, is looking to increase mental health PREM and PROM data collection, and also facilitate international comparisons with 17 countries involved. The main objective is to develop PREM and PROM data collection standards in mental health for international benchmarking of patient-reported outcomes. Three domains which have international coherence have been identified for PREMs (respect and dignity, communication and relationship with health care team and shared decision making), and PROMs (relief of symptom burden, restoring well-being/social function and recovery support). The Working Group is looking towards a pilot PROM data collection, beginning with hospital care, focused on the domain of well-being, drawing on the OECD Guidelines on Measuring Subjective Well-being and the WHO-5 Well-Being Index questionnaire that measures current mental well-being (time-frame of the previous two weeks), with first results expected in 2021.
The PaRIS initiative also includes the development of a standardised international survey of patients with chronic conditions who are treated in primary health care or other ambulatory health care settings. At present, these is scare data on the outcomes and experiences of this significant and growing group of health care users, and even less internationally-comparable data on their experiences and outcomes of care. Mental health will be included both as a chronic condition (depression, anxiety), as a co-morbid chronic condition, and as a dimension of well-being outcome for this survey, which will begin field trials in 2021.
Source: de Bienassis et al. (2021[20]), “Measuring patient voice matters: setting the scene for patient-reported indicators”, https://doi.org/10.1093/intqhc/mzab002; (2021[95]), “Patient-reported indicators in mental health care: towards international standards among members of the OECD”, https://doi.org/10.1093/intqhc/mzab020, OECD (2017[96]), “PaRIS: Patient-Reported Indicator Survey. The next generation of OECD health statistics”, www.oecd.org/health/PaRIS.htm; OECD (2019[1]), “Measuring what matters for people-centred health systems“, https://doi.org/10.1787/4bbba455-en; OECD (2019[97]), “Measuring What Matters: The Patient-Reported Indicator Surveys, 2019 Status Report”, https://www.oecd.org/health/health-systems/Measuring-what-matters-the-Patient-Reported-Indicator-Surveys.pdf.
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