House of Lords - European Union

Select Committee on European Union Fourteenth Report

CHAPTER 10: Information needs

303. One of the four proposed aims of the EU mental health strategy is the development of a mental health information, research and knowledge system. In the Green Paper the Commission note that mental health is poorly covered by existing health monitoring systems. They suggest that major efforts are needed to harmonise existing national and international indicators on mental health and disability in populations in order to create a comparable dataset across the EU. They also state that more data are required on the social, demographic and economic determinants of mental health, as well as on promotion and preventive infrastructures, activities and resources.[64]

304. We agree with the Commission's identification of these key information issues. Better statistical indicators would assist comparison between countries and the monitoring of progress towards either minimum standards or guiding principles, and whether the comparisons or advisory activities or monitoring were carried out by the Commission, the World Health Organization, national governments and/or others. Of course, service users, families, their advocates, taxpayers and others might also wish to know how well a mental health system is functioning.

305. In addition, there are relevant aspects of a mental health system that cannot easily or sensibly be summarised by statistical indicators, such as public attitudes, the extent to which service users are empowered in choosing their care arrangements, how well legislative structures protect human rights, whether the various agencies with roles to play are collaborating fruitfully in the promotion of better mental health and the treatment of those problems that emerge, and whether the right incentives are in place to encourage better access to care.

306. Encouraging more and better research in the mental health field could support the quest for reliable and useful statistical indicators on needs, resources, activities and achievements. Research could also help to illuminate any or all those areas mentioned in the previous paragraph, including in circumstances where comparisons are made across countries. Research that actively involved service users and family members would be more likely to engage with the people most affected by mental health problems whilst ensuring that experiential data are drawn upon.

307. In the final part of our Inquiry, we focused on these three areas: statistics; other information; and research. Each is addressed below. The points arising take us back to the theme running through this Report: the benefits of sharing of experiences between and within countries, and especially the sharing of examples of best practice.

Statistics on mental health systems

308. In principle, it would be possible to contemplate a wide range of statistics on aspects of a mental health system, covering such areas as the prevalence of different mental health problems, the incidence of new cases, the needs of individuals with those problems, and the needs of their families. There could be statistics that measure the levels and patterns of expenditure by health care and other relevant agencies, and on how those expenditures are allocated. Indicators might also cover the availability of services, the volumes of services delivered and patterns of use, the pharmacological treatments that are licensed and those that are reimbursed or provided with public health care systems. At the level of the individual service user or family, statistics could measure the combinations ("packages") of care that are used and perhaps also give some indication of the consequences of care for health status, functioning, employment and quality of life.

309. The costs of providing those care packages could be measured, and the proportions of total cost falling to the health system, to social care agencies and to other budgets could also be recorded. Costs carried by individuals and families could be measured. There could be statistics on various aspects of social inclusion—for example, the extent to which people with mental health problems are in employment, or actively participating in other aspects of normal life. There could be indicators that record how many people are accommodated in different types of setting, and how many are compulsorily treated.

310. It is not difficult to think of many uses to which any such statistics could be put. But anyone drawing up a list of desirable indicators needs to recognise the difficulties both of obtaining many of these measures, and then of interpreting them. For example, what constitutes a "mental health service" is not consistently agreed across the EU. Consequently, cross-country variations in indicators of service levels, contact rates, expenditure and cost could in part reflect differences in definition. Measuring the outcomes for individual service users is famously difficult, and no mental health system in the EU, indeed worldwide, has developed any satisfactory routine outcome measures. The measure most frequently available is the suicide rate, which is undoubtedly important, but only a small percentage of people with mental health problems could realistically be seen as a suicide risk. Moreover, many people who commit suicide have had no prior contact with mental health services.

311. Mr Scheftlein explained to us that the Commission had developed some mental health indicators, including the European Community Health Indicators, but that in many cases there were problems in getting the data. He hoped that, by giving mental health greater visibility, it would be easier to collect the necessary information. He also hoped that the European Statistical Office (Eurostat) could be involved in developing more survey-based information in the future, that there would be more psychological indicators in the European household survey, and that the EU's Labour Force Survey could include more mental health indicators. Mr Scheftlein also referred to the ongoing work of the WHO, particularly its Mental Health Atlas, which provided an inventory of the resources invested in mental health and some indicators of service patterns organisation. However, given the Commission's particular interest and focus on promotion and prevention, the challenges of obtaining good indicators should not be underestimated (QQ 9, 23).

312. Mr McDaid told us that his view was that, while there was much data relating to mental health problems available in the UK in part originating from the Department of Health and the Office for National Statistics (ONS), the available data for other some European countries were very limited. He added that he did not think it possible for the EU to try to impose a common system of data collection using the same standard for all countries. But he did see a role for Eurostat in trying to increase the amount of mental health information that was collected; and for there to be arrangements for the sharing of good practice relating to data collection and measurement methods (QQ 53-54).

313. Asked to be more specific about the particular types of data he saw as most important, Mr McDaid mentioned: information about the utilisation of services; access to services; the availability of services; and the incidence and prevalence of poor mental health across Europe (Q 55). He referred to some useful indicators on the prevalence of mental health problems and costs across European countries that have been produced recently by the European Brain Council and also by the Mental Health Economics European Network, both of which initiatives were drawn upon by the Commission in preparing the Green Paper. Both initiatives also illustrated the difficulties of obtaining usable data from all countries (QQ 53, 63).

314. A further point made by Mr McDaid was that, in relation to the collection and interpretation of statistics, there was a need for better communication within the Commission, and between the Commission and the research community. Professor Graham Thornicroft thought that "there is a lot of information collected within Europe, but much of it is not very informative". A lot of the available information related to inputs (such as expenditure) or processes (such as bed numbers), but there was relatively little on the extent to which services were being delivered in ways that were acceptable to the individuals they were intended to benefit, or on the extent to which individuals' needs were being met (Q 56).

315. Professor Priebe reinforced the point about the desirability of improved data. His view was that anyone who has tried to put data from different countries together would have found the experience much more difficult than anticipated. He suggested that reliable information on simple parameters such as the provision of different types of services, let alone more sophisticated indicators, could be extremely difficult to obtain, and that comparisons were further complicated by different definitions and connotations (pp 159-161).

317. Mrs Kathryn Tyson, of the Department of Health, told us that she expected that, just as the state of mental health care varied considerably across Member States, so also did the state of information about the performance of service systems and the general state of population mental health. She referred to the Mental Health Minimum Data Set (MDS),[65] which was quite a comprehensive tool although not yet as widely implemented and used as they would hope. She explained that, where the MDS was fully implemented, it provided a rich source of data including information about: what services were doing; how they were helping people; and how many people were being helped (Q 84).

318. Mrs Alexandra Burner of Rethink described how statistical information was increasingly available from Eurostat and the WHO, but that the type of information available remained quite limited. She particularly lamented the lack of service user and carer involvement in the processes of information design and collection. This was another reason for welcoming the platform approach proposed by the Commission, because this would help to give service users and carers a voice within Europe (Q 159).

319. We recognise the inherent difficulties of obtaining consistently defined, reliable and meaningful indicators for some key dimensions of a mental health system, such as the outcomes of treatment and care for individuals and families. Nevertheless, if the ultimate performance of a mental health system is to be assessed and monitored, such indicators will be needed. We welcome the Commission's quest to develop better statistical indicators of how national mental health systems are funded, how they function and how they perform.

320. We recommend that the Commission encourage Member States to invest in better statistical reporting on mental health problems and the systems of services set up to respond to them. These indicators should relate not only to health care, but also range over relevant aspects of social care, housing, education, criminal justice, social security and other fields.

Information on policy and practice

321. Some of the issues raised during the course of our inquiry do not lend themselves to simple statistical summary. Some examples are:

public attitudes about mental health (even though attitude surveys can generate some useful indicators);

experiences of stigma;

detailed aspects of national or local mental health policies;

eligibility criteria for treatment;

types of funding system for health or other care and the incentives they create;

the extent to which individuals are empowered to take decisions or take control in mental health systems; and

protection or denial of various human rights.

322. There is nevertheless a need to ensure that information is available on these aspects of mental health policy, practice and context. Mr David McDaid, and colleagues from the London School of Economics, drew upon the recently published book, Mental Health Policy and Practice across Europe, to discuss the information needs for a European mental health strategy. They suggested the intelligence-gathering role within an EU strategy would not only be a question of the regular collection of comparable data across Europe. Information was needed, relating both to the health sector and more widely, about services, structures and national and regional strategies in the field of mental health. The current lack of information across Europe about public attitudes to mental health and the pervasiveness of stigma might also usefully be addressed in an EU context (pp 10-12).

323. Mr Jurgen Scheftlein described to us the need for information to be available that ranged beyond the mental health system narrowly defined. He wanted to encourage the involvement in a mental health strategy of many parts of society, including businesses, schools and others in what he referred to as the public health approach. This in turn would require national governments to have information, and statistical data if appropriate, about these various other sectors and how they could contribute to mental health prevention and promotion efforts. This would also contribute to consensus building, and also, he hoped, help to convince these other actors of the need to invest in better mental health (QQ 17-18).

324. We recognise that some highly relevant aspects of mental health systems cannot easily be described with statistical indicators. Nevertheless, we recommend that the Commission should seek to collect comparable information on aspects of policy, practice and experience to underpin national and European strategies to improve the mental health of the population.

Research

325. Research, whether funded by national governments, the EC or other bodies, provides one way to generate the statistical and other information needed to underpin, monitor and evaluate mental health policies and practices.

326. Mr Bowis explained to us that the EU had ensured that mental health research was a key part of the sixth and seventh Framework Programmes being taken forward by the part of the European Commission responsible for research (Directorate General—Research). That mental health had a stronger position in the research programmes than ever before, was welcome. He also referred to the work of the European Health Observatory and the publications it produced on each country in the EU and elsewhere, describing health systems in quite some detail. As the book describing each country's health system came to be revised, so the amount of attention given to mental health problems and their treatment grew. This facilitated objective comparisons across countries (QQ 133-135).

327. Mr McDaid and colleagues suggested that an EU strategy could have a role in helping to strengthen weaker parts of the evidence base. This was often in areas where research funding was difficult to obtain. Funding might be through the EU's Research Framework Programme, but also through individual Commission Directorates. Among the areas where research was needed, they suggested, were workplace mental health promotion strategies and strategies to help people with mental health problems return to work (pp 10-12).

328. Other evidence advocated the need for specific pieces of research work. Rethink argued that the Commission should undertake a broad piece of work on social inclusion and rights (pp 60-63). The Mental Disability Advocacy Center wanted the Commission to sponsor research on community care, in order to highlight the successes, limitations and failings of Member States' efforts to date. This would provide the basis for developing joint strategies to improve European mental health systems (pp 134-140).

329. The Royal College of Psychiatrists recommended shared research across countries on epidemiology and resourcing mechanisms. This would be designed to highlight variations in local prevalence, social deprivation and the distribution of services (pp 161-164).

330. We draw attention to the need for more and better research to establish which circumstances, factors and actions lead to improved performance in mental health systems. This includes research on patterns of care, the utilisation of compulsory powers, quality of care, social inclusion and participation, discrimination, service user choice and empowerment, protection of human rights and effective forms of mental health promotion and prevention.

Sharing good practice

331. The Commission's proposed approach for taking forward a mental health strategy envisages the use of a platform or its equivalent to promote cooperation and information exchange across the EU. There would be considerable advantage in using this approach to share information about the operation and performance of mental health systems across countries, highlighting evidence-based processes and practices that have demonstrated success in preventing the emergence of mental health problems or in promoting better quality of life for people with those problems.

332. The Department of Health's view was that the Commission's proposal for a relatively informal means of exchanging data would be helpful for Member States, allowing them to compare their policy targets and provision, and to learn from each other's approaches to performance monitoring and statistical collection. Given the considerable challenges of overcoming social exclusion, tackling stigma and discrimination and preventing mental health problems, Mrs Tyson said that the Department of Health would welcome all the help and learning that it could get. Consequently, she felt that any information sharing, good practice sharing, platform and facilitation that could be obtained, through the EU Strategy and from other places, would be extremely welcome. The small but growing body of evidence on what worked needed to be nurtured and disseminated. This should be a cross-governmental and cross-European initiative (Q 84).

333. Other witnesses strongly supported the proposals to share experiences. Mr Paul Corry described how Rethink hosted the annual general meeting of the European Federation of Associations of Families of People with Mental Illness (EUFAMI) two years ago, bringing together organisations from around Europe to share experiences. Dr Marcus Roberts of Mind described the work of Mental Health Europe, an umbrella organisation for voluntary sector provider and service user organisations, as an information hub. He also referred to a network called "Users, Ex-Users and Survivors of Psychiatry". Consequently, there might not be a need to set up a new platform but to invest in existing arrangements, although all were currently small and with limited funding bases. Sharing good practice on user involvement across the EU would have a number of benefits, as would an approach that encouraged proper service user involvement from the outset in all discussions of mental health policy and practice development (Q 140).

334. The top priority for the sharing of information and experience identified by Ms Camilla Parker was best practice in relation to the transition from institutional care to community-based services. The UK had made good progress in this area, but had not yet got it right, and could learn from elsewhere. She also identified the need to gather good practice examples on the child and adolescent mental health, particularly on early intervention, and the transition between children and adolescent mental health services and adult mental health services (QQ 191-192).