Activities to Date
What is POMONA?
POMONA is a European Commission Public Health funded project (2002-2004) that aimed to identify health indicators for people with intellectual disability. By developing health indicators specifically for people with intellectual disability POMONA aimed to advance the future understanding of health of people with intellectual disabilities across the European Union. In addition, it is hoped that these health indicators will facilitate the planning, monitoring and evaluation of health programmes throughout the Community.
POMONA was officially launched in November 2002 and was co-ordinated by Professor Patricia Noonan Walsh, Centre for Disability Studies, University College Dublin, Professor Mike Kerr, University of Wales College of Medicine and Dr. Henny van Schrojenstein Lantman-de Valk, University of Maastricht. Representatives from an additional nine Member States comprised the POMONA partnership: Dr. Germain Weber, University of Vienna (Austria), Mr. Frank Ulmer Jørgensen, Landsforeninger LEV (Denmark), Dr. Tuomo Määtta, Service Centre of Kuysanmaki (Finland), Professor Charles Aussillous, Peyre Plantade (France), Professor Meindert Haveman, University of Dortmund (Germany), Dott. Serafino Buono, OASI (Italy), Dr. Raymond Ceccotto, Fondation Association des Parents d'Enfants Mentalement Handicapés (Luxembourg), Dr. Luis Salvador, University of Cadiz (Spain), and Dr. Monica Björkman, Landstingets Hjärnskadecenter (Sweden).
POMONA II is the second project in this field to be funded by the European Commission and will run from 2005-2008. Using the set of health indicators developed in POMONA, health indicator data will be collected on a sample of people with intellectual disability from thirteen Member States. Professor Patricia Noonan Walsh, Centre for Disability Studies, University College Dublin is Principal Investigator and Christine Linehan, Senior Researcher, Centre for Disability Studies, University College Dublin is Project Manager. An additional thirteen partners from European Member States participate: Prof. Germain Weber, University of Vienna (Austria), Prof. Geert Van Hove, University of Ghent (Belgium), Dr. Tuomo Määtta, Joint Municipial Authority for Specialised Health Care and Social Welfare in Kainuu, Social Welfare/Service Centre of Kuusanmaki, (Finland), Dr. Bernard Azema, CREAI Centre Régional Pour L'enfance Et Les Adultes Inadaptés (France), Professor Meindert Haveman, University of Dortmund (Germany), Dott. Serafino Buono, OASI (Italy), Dr. Arunas Germanavicius, Vilnius University (Lithuania), Dr. Henny van Schrojenstein Lantman-de Valk, Dept of General Practice, University of Maastricht (The Netherlands), Dr. Jan Tossebro, Norwegian University of Science and Technology (Norway), Dr. Alexandra Carmen Câra, Sc Medfam Apolo Srl, (Romania), Dr. Daša Moravec Berger, Institute of Public Health of the Republic of Slovenia (Slovenia), Professor Luis Salvador, Asociacion Espanola para el Estudio Cientifico del Retraso Mental (AEECRM) (Spain), Professor Mike Kerr, Welsh Centre for Learning Disabilities, University of Wales, College of Medicine (United Kingdom).
What is a Health Indicator?
A 'health indicator' as defined by the World Health Organisation (WHO 2002) is 'a variable, applicable to a health or health-related situation, with characteristics of quality, quantity and time used to measure, directly or indirectly, changes in a situation and to appreciate the progress made in addressing it. It also provides a basis for developing adequate plans for improvement.'
A useful example of the role of health indicators in research can be seen from the WHO.s recent research in the field of reproductive health. Three main types of health indicators are identified in this research; indicators that focus on the occurrence of an event (e.g. the onset of seizure disorder), indicators that focus on the prevalence of a characteristic of a person (e.g. the percentage of people with hearing impairment), and indicators that focus on the prevalence of a characteristic in a health facility (e.g. the number of doctors who have special training in good practice treating people with intellectual disability). Once health indicators are identified, the information gleaned from them is used in a variety of ways. Health indicators, for example, can monitor changes in health status over time (e.g. the changing proportion of persons receiving a specific treatment). Additionally, health indicators can monitor differences between population subgroups (e.g. the proportion of people from different backgrounds receiving education). Health indicators can also monitor progress towards targets (e.g. reduction in unhealthy behaviours such as smoking). Finally, health indicators can monitor differences between health facilities in different geographical areas (e.g. the geographical availability of specific services).
Why do we need to identify Health Indicators for People with Intellectual Disability?
In keeping with the aims of the Health Monitoring Programme, a set of European health indicators has been identified for the general population through the work of the ECHI team (European Community Health Indicators). The ECHI Report, published in 2001 under the auspices of the European Community, classified health indicators under four key categories:
- Demography and Socio-economic factors (e.g. the proportion of the population aged over 65 years),
- Health Status (e.g. the prevalence of specific health problems such as lung cancer),
- Determinants of Health (e.g. the proportion of people who drink in excess of the recommended alcohol levels), and
- Health Systems (e.g. the number of acute hospital beds).
The classification system used by the ECHI team provided POMONA with a useful framework to categorise potential health indictors for people with intellectual disability. However, the actual ECHI indicators were not deemed appropriate for people with intellectual disability. Why? Because a considerable body of evidence exists indicating disparities in health status and use of health services between people with intellectual disability and their non-disabled peers. In comparison with the general population for example, individuals with intellectual disability are less likely to receive vaccinations (Schor et al., 1981), have an increased probability of being obese (Bell and Bhate, 1992), and are significantly more likely to have a congenital heart defect (Martin, 1997). In addition, evidence suggests that despite the fact that individuals with intellectual disability have an increased prevalence of certain health conditions, (e.g. thyroid disease or diabetes) these conditions are poorly addressed by primary care providers (Jones and Kerr 1997).
Identifying the Health Indicators
A consultation process was undertaken in each participating Member State with a variety of interested parties such as individuals who have intellectual disabilities, family members, advocates, health professionals and policy makers. The aim of this consultation process was to generate a draft list of appropriate health indicators for people with intellectual disability and to provide, where possible, suggestions to the valid measurement of these indicators in each Member State. Throughout the summer of 2003 POMONA partners undertook this consultation process in their own Member State. Common issues emerging from these consultations included the impact of residential and social supports on health, the inclusion of people with intellectual disability in health promotional activities and the availability of specialised training for health care professionals working in this field.
An all partner meeting in Jerez, Spain in late September 2003 provided a forum for partners to discuss candidate indicators. A draft shortlist of indicators was generated on the basis of these discussions. Partners were then asked to gather evidenced based material from each Member State in support of these health indicators. A final all-partner meeting in April 2004 provided an opportunity for partners to assess the evidence base for these indicators and to agree on their operationalisation, that is, how these health indicators would be measured in the field.
An Interim Report outlining POMONA activities to January 2004 and a final report documenting activities to October 2004 are available on this website
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