Mental health surveillance and information systems

EMHJ  •  Vol. 21  No. 7  •  2015

Eastern Mediterranean Health Journal La Revue de Santé de la Méditerranée orientale

Mental health surveillance and information systems R. Gater,1 D. Chisholm 2 and C. Dowrick 3

‫ مما جيعل‬،‫ـودة‬ ‫ـر موجـ‬ ‫ـة أو غـ‬ ‫ـط بدائيـ‬ ‫ـم رشق املتوسـ‬ ‫ـدان إقليـ‬ ‫ـن بلـ‬ ‫ـد مـ‬ ‫ـية يف العديـ‬ ‫ـة النفسـ‬ ‫ـة بالصحـ‬ ‫ـة املتعلقـ‬ ‫ـات الروتينيـ‬ ‫ـم املعلومـ‬ ‫ إن نظـ‬:‫ـة‬ ‫اخلالصـ‬ ً ‫ـط وفقـ‬ ‫ـات‬ ‫ـم املعلومـ‬ ‫ـية ونظـ‬ ‫ـة النفسـ‬ ‫ـد الصحـ‬ ‫ـية لرتصـ‬ ‫ـات الرئيسـ‬ ‫ إن املكونـ‬.‫ـك‬ ‫ا لذلـ‬ ‫ـن والتخطيـ‬ ‫ـكان املحليـ‬ ‫ـات السـ‬ ‫ـم احتياجـ‬ ‫ـب فهـ‬ ‫ـن الصعـ‬ ‫مـ‬ ‫ـن‬ ‫ـى مـ‬ ‫ـد أدنـ‬ ‫ـود حـ‬ ‫ ووجـ‬،‫ـودة‬ ‫ـة اجلـ‬ ‫ـورة عاليـ‬ ‫ـا بصـ‬ ‫ـة وتبليغهـ‬ ‫ـات ذات الصلـ‬ ‫ـع املعلومـ‬ ‫ـن مجـ‬ ‫ـد مـ‬ ‫ـة للتأكـ‬ ‫ـادة وطنيـ‬ ‫ـزام وقيـ‬ ‫ التـ‬:‫ـي‬ ‫ـا هـ‬ ‫ـة هبـ‬ ‫املتعلقـ‬ ٍ ‫ـتكمل‬ ‫ـي للبيانات ُيسـ‬ ‫ـع روتينـ‬ ‫ ومجـ‬،‫ـات‬ ‫ـادل كاف للبيانـ‬ ‫ـع تبـ‬ ‫ـات مـ‬ ‫ـن القطاعـ‬ ‫ـاون بـ‬ ‫ وتعـ‬،‫ـية‬ ‫ـة النفسـ‬ ‫ـية للصحـ‬ ‫ـؤرشات الرئيسـ‬ ‫ـة باملـ‬ ‫ـات املتعلقـ‬ ‫البيانـ‬ .‫ـا‬ ‫ـا ونرشهـ‬ ‫ـات وتبادهلـ‬ ‫ـع البيانـ‬ ‫ـم مجـ‬ ‫ـة لدعـ‬ ‫ـارات الالزمـ‬ ‫ـة واملهـ‬ ‫ والتقنيـ‬،‫ـات‬ ‫ـة املعلومـ‬ ‫ـى رسيـ‬ ‫ـاظ عـ‬ ‫ـودة واحلفـ‬ ‫ـة اجلـ‬ ‫ ومراقبـ‬،‫ـة‬ ‫ـوحات دوريـ‬ ‫بمسـ‬ ‫ـتخدام‬ ‫ـا باسـ‬ ‫ـاغ عنهـ‬ ‫ـرة واإلبـ‬ ‫ـية املتوفـ‬ ‫ـة النفسـ‬ ‫ـدرات الصحـ‬ ‫ـوارد وقـ‬ ‫ـدوري ملـ‬ ‫ـم الـ‬ ‫) التقييـ‬1( :‫ـمل‬ ‫ـة تشـ‬ ‫ـراتيجية ذات األولويـ‬ ‫ـات االسـ‬ ‫إن التدخـ‬ ‫ـية‬ ‫ـات النفسـ‬ ‫ـبة لالضطرابـ‬ ‫ بالنسـ‬،‫ـتمرارية‬ ‫ـة واالسـ‬ ‫ـات والتغطيـ‬ ‫ـر اخلدمـ‬ ‫ـن توافـ‬ ‫ـاغ عـ‬ ‫ـات واإلبـ‬ ‫ـي للمعلومـ‬ ‫ـع الروتينـ‬ ‫) اجلمـ‬2( ،‫ـدة‬ ‫ـات موحـ‬ ‫منهجيـ‬ ‫ـي‬ ‫ـتوى الوطنـ‬ ‫ـى املسـ‬ ‫ـار عـ‬ ‫ـاالت االنتحـ‬ ‫ـن حـ‬ ‫ـاغ عـ‬ ‫ـي واإلبـ‬ ‫ـجيل اإللزامـ‬ ‫) التسـ‬3( ،‫ـخيص‬ ‫ـوع والتشـ‬ ‫ـن والنـ‬ ‫ـب السـ‬ ‫ـة حسـ‬ ‫ مصنفـ‬،‫ـة‬ ‫ذات األولويـ‬ .)‫ـة‬ ‫ـراض ذات الصلـ‬ ‫ـدويل لألمـ‬ ‫ـف الـ‬ ‫ـوز التصنيـ‬ ‫ـتخدام رمـ‬ ‫(باسـ‬ ABSTRACT Routine information systems for mental health in many Eastern Mediterranean Region countries are rudimentary or absent, making it difficult to understand the needs of local populations and to plan accordingly. Key components for mental health surveillance and information systems are: national commitment and leadership to ensure that relevant high quality information is collected and reported; a minimum data set of key mental health indicators; intersectoral collaboration with appropriate data sharing; routine data collection supplemented with periodic surveys; quality control and confidentiality; and technology and skills to support data collection, sharing and dissemination. Priority strategic interventions include: (1) periodically assessing and reporting the mental health resources and capacities available using standardized methodologies; (2) routine collection of information and reporting on service availability, coverage and continuity, for priority mental disorders disaggregated by age, sex and diagnosis; and (3) mandatory recording and reporting of suicides at the national level (using relevant ICD codes).

‫ كريستوفر دوريك‬،‫ دانييل شيسهومل‬،‫ريتشارد جيرت‬

ُ ‫ترصد الصحة النفسية و ُن‬ ‫م املعلومات‬ ُ‫ظ‬

Systèmes d'information et de surveillances de la santé mentale

RÉSUMÉ Les systèmes d'information de routine pour la santé mentale dans de nombreux pays de la Région de la Méditerranée orientale sont rudimentaires ou font défaut, ce qui rend difficile la compréhension des besoins des populations locales et la planification correspondante. Les composantes clés des systèmes d'information et de surveillance de la santé mentale sont les suivantes : un engagement et un rôle de premier plan à l'échelle nationale pour garantir que des données pertinentes et de haute qualité sont recueillies et transmises ; un ensemble de données minimales servant d'indicateurs clés pour la santé mentale ; une collaboration intersectorielle permettant le partage approprié des informations ; le recueil de données systématique complété par des enquêtes périodiques ; un contrôle qualité et la confidentialité ; et de la technologie et des compétences pour appuyer le recueil, le partage et la diffusion des données. Parmi les interventions stratégiques prioritaires, on peut citer : 1) l'évaluation périodique des ressources et des capacités en santé mentale disponibles et la notification de ces informations à l'aide de méthodologies normalisées ; 2) le recueil et la notification de données systématiques sur la disponibilité des services, leur couverture et leur pérennité pour les troubles de santé mentale prioritaires, ventilées par âge, sexe et diagnostic ; et 3) l'enregistrement et la notification obligatoires des suicides à l'échelle nationale (à l'aide des codes CIM pertinents).

Institute of Brain, Behaviour and Mental Health, University of Manchester, and Lancashire Care NHS Foundation Trust, United Kingdom (Correspondence to R. Gater: richard.gater@manchester.ac.uk). 2Department of Mental Health and Substance Abuse, World Health Organization, Geneva, Switzerland. 3Department of Psychological Sciences, University of Liverpool, Liverpool, United Kingdom. 1

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‫املجلد احلادي و العرشون‬ ‫العدد السابع‬

‫املجلة الصحية لرشق املتوسط‬

The case for mental health surveillance & information systems Surveillance involves the collection, analysis and interpretation of health data and the timely communication of these data to policy-makers and others. The availability of relevant information enables actions to be monitored and improvements in service provision to be detected. Mental health information systems are vital for collecting, processing and analysing information about mental health determinants, needs, system responses and the impact of interventions. But it is also crucial that findings are communicated in a form that is accessible and useful to those who will utilize them. Only then can the mental health information system perform its functions of facilitating effective planning, budgeting, delivery and evaluation of mental health care. This information loop from data collection, through analysis and reporting to informed implementation of plans (Figure 1), needs to be driven by an infrastructure

of training andt supervision of all staff involved, of quality assurance and of confidentiality. These activities require clear leadership to oversee and manage the process in its entirety. Preliminary findings from the World Health Organization (WHO) Mental health atlas survey 2014 [in press] shows that more than one-third of Eastern Mediterranean Region (EMR) countries have not published a specific mental health information report in the past 2 years. Approximately half were unable to provide any financial information and less than one-sixth knew their total expenditure for mental health. About two-thirds of countries in the Region did not know the total number of staff in the mental health workforce. Although more than half could report the number of persons treated at mental hospitals, the great majority of countries were unable to report the number of persons with mental disorders who received care in mental health outpatients departments or in primary care facilities. About half of EMR countries had data on length of stay and involuntary admissions, but few reported on the proportion of

persons discharged from hospital who had a follow-up visit within one month. Only one-quarter of EMR countries were able to report data on numbers of suicides. Suicide rates in EMR countries may be under-reported or even unreported for social, religious and cultural reasons. The difficulty in providing information for the Mental health atlas, particularly on expenditure on mental health care, number of professionals working in different settings, mental health service coverage and suicide data, suggests that many countries are managing with very rudimentary information systems, making it difficult for them to understand the needs of local populations and to plan accordingly.

What information is needed for mental health policy, planning and evaluation? Collecting a small number of carefully selected indicators thoroughly and consistently over time (both within and across countries) is more effective than collecting a large number of indicators that are never implemented. The collected indicators should be meaningful to health planners, acceptable to stakeholders, valid, reliable, comparable over time and sensitive to change. They need to be disaggregated by sex and age and by other variables, in order to capture the diverse needs of subpopulations, including individuals from geographically diverse communities (for instance, urban versus rural) and vulnerable populations. Three WHO sources—the Comprehensive Mental Health Action Plan 2013–20 (1); the EMR Regional Framework (2); and the WHO Mental Health Gap Action Programme (mhGAP) monitoring and evaluation tool kit (3)—can be used to identify a minimum data set for mental health. A set of indicators assembled from the Comprehensive Mental Health Action Plan and the EMR Regional Framework are included in Table 1. 513

Data collection

Implement of plans

Process data to produce indicators

Use reports to make planning decisions

Analysis

Prepare reports

Figure 1 Information loop of data collection

EMHJ  •  Vol. 21  No. 7  •  2015

Eastern Mediterranean Health Journal La Revue de Santé de la Méditerranée orientale

How can information for mental health be generated? Data relating to internationally agreed as well as locally determined mental health indicators can be collected routinely or periodically. Ideally, most of the data requirements should be generated on

a routine basis via local information systems; for example, deaths attributable to suicide and self-harm should be recorded in vital registration systems, while cases of mental disorder receiving care and treatment should be identifiable through facility-based recording systems (see Box 1 for an example from Saudi Arabia).

In situations where routine health information systems may not yet be in place or functioning well, or where more periodic assessment may be sufficient (e.g. the compliance of local mental health legislation with international or regional human rights instruments), periodic but regular surveys can be used to monitor developments. For example, in

Table 1 Proposed mental health indicators for the Eastern Mediterranean Region Periodic survey • Country has an operational multisectoral national mental health policy/plan in line with international/regional human rights instruments. • Country has an updated national mental health legislation in line with international/regional human rights instruments. • Inclusion of specific priority to mental health conditions in basic packages of health care, of public and private insurance/ reimbursement schemes. • Mental health and psychosocial support provision is integrated into the national emergency preparedness plans. • A proportion of mental health facilities are monitored annually to ensure protection of human rights of persons with mental conditions using quality and rights standards. • Functioning programmes of multisectoral mental health promotion and prevention in existence. • Financial resources: government health expenditure on mental health • Stakeholder involvement: participation of associations of persons with mental disorders and family members in service planning and development. Routine national HMIS • Routine data and reports at national level available on a core set of mental health indicators. • Proportion of persons with mental health conditions utilizing health services (disaggregated by age, sex, diagnosis and setting). • Proportion of general hospitals which have mental health units including inpatient and outpatient units. • Proportion of PHC facilities having regular availability of essential psychotropic medicines. • Proportion of PHC facilities with at least one staff member trained to deliver nonpharmacological interventions. • Proportion of health-care workers trained in recognition and management of priority mental conditions during emergencies. • Proportion of community workers trained in early recognition and management of maternal depression and to provide early childhood care and development and parenting skills to mothers and families. Routine national information system other than HMIS • Proportion of schools implementing the whole-school approach to promote life skills. • Annual reporting of national data on numbers of deaths by suicide.

• Human resources: number of mental health workers. • Capacity building: number and proportion of primary care staff trained in mental health. • Service availability: number of mental health care facilities at different levels of service delivery. • Inpatient care: number and proportion of admissions for severe mental disorders to inpatient mental health facilities that a) exceed one year and b) are involuntary • Service continuity: number of persons with a severe mental disorder discharged from a mental or general hospital in the last year who were followed up within one month by community-based health services.

• Social support: number of persons with a severe mental disorder who receive disability payments or income support.

Based on the World Health Organization Comprehensive Mental Health Action Plan (1) and the Eastern Mediterranean Region Regional Framework (2); and additional mental health service development indicators identified by the WHO Secretariat. PHC = primary health care; HMIS = health management information system.

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‫املجلد احلادي و العرشون‬ ‫العدد السابع‬

‫املجلة الصحية لرشق املتوسط‬

order to measure current and increased service coverage for severe mental disorders—a core mental health indicator of the global Action Plan—many countries may consider carrying out a baseline and repeat survey of provider facilities in one or more defined geographical areas of the country. Table 2 provides examples of expected data collection strategies and sources for a number of key mental health indicators.

How can information be used? The information loop is completed when the information is presented in a meaningful way and it is used to inform service planning. In 2010 the regional report based on the WHO Assessment Instrument for Mental Health Systems (AIMS) found that 71% of countries had a formally defined list of mental health data items to collect, and 65% of countries had published the data; however, only 30% published the data with comments (5). In other words, although information was being collected, it was seldom analysed so that it could be used as a tool for action. Traditionally, reporting has been in the form of printed statistical tables with a commentary, but Internet-based

technology now offers the opportunity for information integrated from different sources to be disseminated rapidly to end-users in a relevant and interactive format at a local, national, regional or global level. The WHO Regional Office for the Eastern Mediterranean (EMRO) is currently engaged in developing a regional National Health Information Systems (NHIS) strategy and a set of core health indicators which countries should report to EMRO on a regular basis. The strategy anticipates that NHIS will be required to move to systems that are deployed on the Internet, and by design are integrated based on principles of data warehousing. This will enable the access of data from different sources, and facilitate circulation of accessible data. Whatever reporting system is in place, it is important that policy-makers and service planners have the skills to interpret and apply the evidence from information systems; and that reporting is part of an ongoing dialogue with policy-makers and service planners, to ensure that information is relevant and presented in a useful format.

• Establish a national focus of expertise and leadership to implement the development, reporting and use of mental health surveillance and information involving collaboration between relevant service providers working in the field of mental health: ministries of health, university hospitals, psychiatric associations, private hospitals, nongovernmental organizations and key opinion leaders. • Develop procedures, regulations and training to ensure that the processes of collecting, analysing, reporting and using data meet standards of quality and confidentiality. 2. Routinely collect information and report on service availability, coverage and continuity, for priority mental disorders disaggregated by age, sex and diagnosis. • Develop or strengthen national mental health information systems incorporating the indicators in Table 1. • Collaborate with the EMR regional strategy for NHIS strengthening to develop information systems that utilize web-based technologies and data warehousing to facilitate the integration of information. These will enable the access of data from different sectors and settings, and facilitate circulation of accessible data. 3. Record and report on deaths as a result of suicide at the national level (using the relevant International classification of diseases (ICD) X-codes).

Key recommendations 1. Periodically assess and report the mental health resources and capacities available using standardized methodologies.

Table 2 Examples of expected data collection strategies and sources for a number of key mental health indicators Level National Indicators (examples) • Existence of mental health policy and laws • Mental health expenditure • Suicide rate • Civil society and stakeholder involvement District • Human resources for mental health • Mental health training for primary health-care workers • Availability of mental health services Facility Individual • Hospital admissions (total, involuntary) • Follow-up rate (continuity of care) • Service uptake and use • Social and economic determinants Data source(s)/ collection methods • Physical availability of policy or law • National health accounts • Vital registration system • Periodic survey • Health information system • Health information system • Health information system; periodic survey • Health information system; facility records • Health information system; facility records • Demographic and health survey; integrate items in information systems of other sectors, e.g. housing, education, employment, prisons

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Eastern Mediterranean Health Journal La Revue de Santé de la Méditerranée orientale

References 1. Mental health action plan 2013–2020. Geneva: World Health Organization; 2013 (http://www.who.int/iris/bitstre am/10665/89966/1/9789241506021_eng.pdf, accessed 9 February 2015). Proposed regional framework to scale up action on mental health in the Eastern Mediterranean Region. East Mediterr Health J. 2015; 21(7):549–50. mhGAP Mental Health Gap Action Programme. Scaling up care for mental, neurological, and substance use disorders. Geneva: World Health Organization; 2008 (http://whqlibdoc.who.int/publications/2008/9789241596206_eng.pdf, accessed 9 February 2015). 4. Al-Khathami AD, Al-Harbi LS, AlSalehi SM, Al-Turki KA, AlZahrani MA, Alotaibi NA, et al. A primary mental health programme in Eastern Province, Saudi Arabia, 2003-2013. Mental Health in Family Medicine. 2013;10:203–10. Mental health systems in the Eastern Mediterranean Region. Report based on the WHO assessment instrument for mental health systems. Cairo: World Health Organization Regional Office for the Eastern Mediterranean; 2010. (EMRO Technical Publications Series No. 37) (http://applications.emro.who. int/dsaf/dsa1219.pdf?ua=1, accessed 9 February 2015).

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