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Developing Health Indicators for People with Intellectual Disabilities. The Method of the Pomona Project

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Title: Developing Health Indicators for People with Intellectual Disabilities. The Method of the Pomona Project
Language: English
Authors: van Schrojenstein Lantman-de Valk, H., Linehan, C., Kerr, M., Noonan-Walsh, P.
Source: Journal of Intellectual Disability Research. Jun 2007 51(6):427-434.
Availability: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
Peer Reviewed: Y
Page Count: 8
Publication Date: 2007
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Public Health, Health Personnel, Health Conditions, Health Promotion, Mental Retardation, Public Policy, Databases, Data Collection, Physical Health, Comparative Analysis, Adults, Family Characteristics, Medical Services
DOI: 10.1111/j.1365-2788.2006.00890.x
ISSN: 0964-2633
Abstract: Aim: Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. Method: Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. Results: This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. Conclusion: The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005-08) to gather information about the health of samples of adults in 14 participating European countries.
Abstractor: Author
Number of References: 34
Entry Date: 2007
Accession Number: EJ762146
Database: ERIC
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  Value: <anid>AN0024977150;eul01jun.07;2019Jun04.10:26;v2.2.500</anid> <title id="AN0024977150-1">Developing health indicators for people with intellectual disabilities. The method of the Pomona project. </title> <p>Aim  Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. Method  Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio‐demographic data, health status, health determinants and health systems. Results  This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. Conclusion  The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005–08) to gather information about the health of samples of adults in 14 participating European countries.</p> <p>Keywords: health indicators; health inequality; method; intellectual disabilities</p> <p>People with intellectual disabilities (ID) are less healthy than their peers of the same age ([<reflink idref="bib4" id="ref1">4</reflink>]; [<reflink idref="bib24" id="ref2">24</reflink>]).</p> <p>Some of these health disparities are health inequalities, i.e. they are avoidable and may in fact be unjust ([<reflink idref="bib19" id="ref3">19</reflink>]). Addressing these health inequalities is in line with both World Health Organization (WHO) and European Union (EU) policies aimed at offering equal opportunities for all. There is a need for evidence‐based data on the types and amount of these inequalities that permit comparisons with the general population and to target and monitor the effects of health programmes. This paper describes the method applied in Pomona, an EU project aimed at identifying health indicators for people with ID in 13 participating member states ([<reflink idref="bib26" id="ref4">26</reflink>], [<reflink idref="bib27" id="ref5">27</reflink>]).</p> <hd id="AN0024977150-2">Inequalities in health</hd> <p>In general, health differences amongst people may arise naturally because of biological variations. However, some health differences are avoidable and may be amenable to intervention. Determinants include severely restricted choice of lifestyle; exposure to unhealthy, stressful living and working conditions; and inadequate access to essential health services and other basic services ([<reflink idref="bib28" id="ref6">28</reflink>]). 'Health inequalities' is the term for health differences amongst people in general. Health disparities are population‐specific differences in health indicators. Health inequities are those inequalities that are avoidable, unjust and amenable to intervention ([<reflink idref="bib15" id="ref7">15</reflink>]).</p> <p>Concern about the health disparities amongst people with ID led to cooperation between the WHO and the International Association for the Scientific Study of Intellectual Disabilities (IASSID), resulting in reports on health in people with ID ([<reflink idref="bib8" id="ref8">8</reflink>]; [<reflink idref="bib29" id="ref9">29</reflink>]). 'Health Disparities' was the theme of a major meeting organized by the IASSID's Special Research Interest Group on Health (SIRG Health) in Westchester, New York ([<reflink idref="bib19" id="ref10">19</reflink>]).</p> <p>Various determinants play a role in the health of people with ID.</p> <p>Because of limited verbal capacities, they may experience problems in communicating with health care professionals, both in verbalizing complaints and in providing their medical history. A further difficulty may arise in understanding diagnosis and treatment options. Medical staff are often not trained to communicate using non‐verbal strategies such as gestures, pictures, pictograms and other illustrative materials ([<reflink idref="bib12" id="ref11">12</reflink>]).</p> <p>Disabilities‐related morbidity may manifest itself as neurological and psychiatric disorders such as epilepsy, motor problems and sensory disorders ([<reflink idref="bib20" id="ref12">20</reflink>]). Mental‐health problems in people with ID may remain undetected and/or may be misinterpreted as behaviour disorders ([<reflink idref="bib18" id="ref13">18</reflink>]). Signs of physical discomfort such as head banging that may be due, for example, to toothache may be misinterpreted as challenging behaviour instead of a sign of pain and a demand for help. Furthermore, people with ID due to genetic syndromes have a higher risk for syndrome‐related disorders, e.g. the comorbidity which is specific for Down syndrome or Prader–Willi syndrome ([<reflink idref="bib32" id="ref14">32</reflink>]). There is a high use of psychotropic medication amongst people with ID ([<reflink idref="bib22" id="ref15">22</reflink>]). Life‐long medication intake necessary for epilepsy and/or psychiatric disorders may have undesirable side effects, such as osteoporosis and a lower level of consciousness leading to falls fractures and other incidents ([<reflink idref="bib25" id="ref16">25</reflink>]).</p> <p>People with ID are also at risk for lifestyle‐related comorbidity, characterized by fewer options for sports and mobility ([<reflink idref="bib13" id="ref17">13</reflink>]). The inability to read written health promotion materials may result in a lower participation in breast cancer screening through mammography ([<reflink idref="bib9" id="ref18">9</reflink>]; [<reflink idref="bib23" id="ref19">23</reflink>]). However, it should be noted that personal risk‐taking health behaviours such as smoking and excessive alcohol intake might be reduced in this population ([<reflink idref="bib11" id="ref20">11</reflink>]; [<reflink idref="bib17" id="ref21">17</reflink>]).</p> <p>Finally, people with ID are socially and economically disadvantaged: generally they have low incomes, small social networks without many friends and a weak representation at policy level ([<reflink idref="bib33" id="ref22">33</reflink>]). Their access to essential health services and other basic services is limited, and they are exposed to unhealthy, stressful living and working conditions. ([<reflink idref="bib5" id="ref23">5</reflink>]; [<reflink idref="bib15" id="ref24">15</reflink>]). Integration into the local community is mostly physical, and social integration such as making friends with the neighbours rarely takes place ([<reflink idref="bib7" id="ref25">7</reflink>]).</p> <hd id="AN0024977150-3">Health indicators within the European Community</hd> <p>Within the expanding European Community, the need was identified for an evidence‐based community health policy to equalize the opportunities for all European citizens and to support national and international policies aiming at equal health opportunities for all citizens. The European Community Action Programme on Health Monitoring (HMP) was established in 1997 to improve health information, to develop a community‐wide network of sharing data and to strengthen analyses and reporting. The evidence base for this health policy was provided by health indicators.</p> <p>Health indicators ([<reflink idref="bib30" id="ref26">30</reflink>]) are defined as indicators applicable to health or a health‐related situation. Health indicators are measurable and can be expressed in various ways, e.g. as a rate per unit of population per unit of time, a proportion at a point in time or an absolute number in a defined population. Health indicators can be used to assess the health status of a group, a population or the differences between groups, at a certain moment. They can also be used to monitor changes over time and the outcomes of implementing a health‐related programme. Health care providers may use health indicators to plan and to control the quality of care provided, while public health officers may apply indicators to survey the health status of groups or to survey the outcomes of special care provisions. Researchers may wish to evaluate programmes, search for a knowledge base or highlight issues that need more attention from care providers or policy‐makers.</p> <p>The European Community Health Indicators (ECHI) project group prepared a set of health indicators that apply to the general population, thus meeting objectives of public health monitoring within the European Community ([<reflink idref="bib10" id="ref27">10</reflink>]). Their prerequisites were that the selection should be guided by scientific principles, that indicators should meet methodological and quality criteria, that indicators should be flexible enough to meet changing policy interests and that the selection should be based on existing and comparable data sets. Based on these criteria, the ECHI Group developed four key categories of indicators:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Demographic and socio‐economic factors, providing a general picture of the situation in a country or a region, often providing the denominator in calculating other health indicators.</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Health status, dealing with various aspects of the actual health status of a population.</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Determinants of health, containing all factors determining health outside the health care system.</item> <p></p> </ulist> <p>• 4</p> <p></p> <ulist> <item> Health systems, including indicators on health services systems as well as on prevention and health promotion.</item> </ulist> <hd id="AN0024977150-4">Health indicators for people with intellectual disabilities – The Pomona project</hd> <p>The development of health indicators relevant to apparent health disparities amongst people with ID in the European communities offered an opportunity to identify and in time reduce inequities experienced by this group. The (then) HMP within Directorate General for Health and Consumer Affairs sup‐ ported the Pomona project 2002–04 (<ulink href="http://www.pomonaproject.org">http://www.pomonaproject.org</ulink>).</p> <p>The aims of the Pomona project were:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> to determine what health indicators, if any, were in place across the member states;</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> to consult on practices, referring to scientific evidence, about optimal indicators for this population; and</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> to propose a set of health indicators for people with ID across the member states.</item> </ulist> <p>This paper describes the process and methodology of the project.</p> <hd id="AN0024977150-5">Procedures</hd> <p>The methods of this project were based on the principles of focus group consultation with advocates and experts across 13 participating countries and a literature search to build an evidence base. The procedure resembled the methods of other EU projects aiming at better knowledge about the health of particular groups in society. Two exemplars were the Children Health Indicators of Life and Development (CHILD project) ([<reflink idref="bib16" id="ref28">16</reflink>]) and the PERISTAT project that focused on indicators for monitoring and evaluating perinatal health ([<reflink idref="bib34" id="ref29">34</reflink>]). The Pomona project (2002/203496‐00) – named for the Roman goddess of fruit trees and abundance – was carried out from November 2002 through October 2004.</p> <hd id="AN0024977150-6">Community‐wide representation</hd> <p>The Pomona 1 partners were: Bernard Azema (France); Monica Bjorkman (Sweden); Serafino Buono (Italy); Raymond Cecotto (Luxembourg); Meindert Haveman (Germany); Frank Ulmer Jorgensen (Denmark); Mike Kerr (UK); Tuomo Maatta (Finland); Geert van Hove (Belgium); Luis Salvador‐Carulla (Spain); Henny van Schrojenstein Lantman‐de Valk (the Netherlands); Patricia Noonan Walsh (Ireland); and Germain Weber (Austria). Three partners from Ireland, the lead country, and from the UK and the Netherlands formed the project's steering group. Christine Linehan (Ireland) was project manager.</p> <hd id="AN0024977150-7">Multistep consultation</hd> <p>At their first meeting in Montpellier in January 2003, the project partners reviewed the four‐part ECHI framework and adopted it as the basis of the indicator set they would develop on behalf of people with ID. After this meeting, partners consulted with a wide variety of stakeholders in their respective countries. These included people with ID, carers and family members, direct care staff, health professionals, researchers, policy‐makers and service providers. Consultations assumed various formats: face‐to‐face interviews, focus groups, questionnaires, written submissions and workshops.</p> <p>To elicit the relevant themes, techniques such as peer debriefing and member checking were used ([<reflink idref="bib14" id="ref30">14</reflink>]; [<reflink idref="bib31" id="ref31">31</reflink>]). Peer debriefing is a technique where the emerging concepts are presented to colleagues outside the project to explore if they find the results reasonable, relevant and logical. In member checking, asking the informants whether they recognize themselves in the interpretations of the materials helps to validate the results. Partners were asked to evaluate the ECHI health indicators with the stakeholders, and if necessary, to identify additional health indicators that could be important for the target group. Literature reviews on key aspects of health and ID and searches in national and international databases were started, searching for evidence on health indicators.</p> <p>Partners from participating member states presented the findings of their consultations in their respective countries at the second meeting at Jerez de la Frontera in September 2003. With this information, indicators were evaluated by applying four criteria:</p> <p></p> <ulist> <item> • </item> <p></p> <item> Is the health indicator important for people with ID?</item> <p></p> <item> • </item> <p></p> <item> Is there a disparity between the prevalence rates of the health indicator for those with ID when compared with the general population?</item> <p></p> <item> • </item> <p></p> <item> Is the health indicator a useful tool in gathering information about the health status of people with ID?</item> <p></p> <item> • </item> <p></p> <item> Is there information on the health indicator in each participating member state?</item> </ulist> <p>Having applied these criteria, and included all feedback from partners, a draft set of indicators under four categories was agreed (Table 1).</p> <p>1 Draft set of health indicators for people with intellectual disabilities</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Category of indicators</bold></th><th><bold>Health indicator</bold></th><th><bold>European Community Health Indicators</bold></th></tr></thead><tbody valign="top"><tr><td>Demographics</td><td>1.1 Prevalence</td><td>1.1 Total population, population composition by age, by region, by urbanization level.</td></tr><tr><td>1.2 Household composition</td><td>1.2.1 Population by household situation</td></tr><tr><td>1.3 Employment</td><td>1.2.4 Population by employment type, occupational class, total labour force; total (un)employment</td></tr><tr><td>1.4 Income/socio‐economic status</td><td>1.2.5 Population by income level, income distribution</td></tr><tr><td>1.5 Life expectancy</td><td>At birth, ages 1, 15, 45, 65, 75 years</td></tr><tr><td>1.6 Location of people</td><td>3.1 Housing</td></tr><tr><td>Health status</td><td>2.1 Epilepsy</td><td>2.3.2 Chronic disease</td></tr><tr><td>2.2 Dental health</td><td /></tr><tr><td>2.3 Weight</td><td /></tr><tr><td>2.4 Mental health</td><td>2.3.6 General mental health</td></tr><tr><td>2.5 Mortality</td><td>2.2 Mortality</td></tr><tr><td>2.6 Challenging behaviour</td><td>2.3.6 General mental health</td></tr><tr><td>2.7 Sensory capacities</td><td>2.3.3 Functional limitations</td></tr><tr><td>2.8 Mobility</td><td>2.3.3 Functional limitations</td></tr><tr><td>2.9 Activities of daily living</td><td>2.3.3 Functional limitations</td></tr><tr><td>Determinants of health</td><td>3.1 Social support networks</td><td>3.3 Social support/social isolation</td></tr><tr><td>3.2 Exercise</td><td /></tr><tr><td>3.3 Body mass index (BMI)</td><td>3.1.1 BMI</td></tr><tr><td>3.4 Carer's ability to cope</td><td>3.1.2 Coping ability</td></tr><tr><td>3.5 Respite facilities</td><td /></tr><tr><td>3.6 Self‐injury</td><td /></tr><tr><td>3.7 Communication of self‐needs</td><td>2.3.3 Functional limitations</td></tr><tr><td>Health systems</td><td>4.1 Information for staff and family</td><td>4.1.2 Health promotion</td></tr><tr><td>4.2 Medication</td><td>4.3.4 Medicine use</td></tr><tr><td>4.3 Hospitalization</td><td>4.3.1 Inpatient care utilization</td></tr><tr><td>4.4 Regular check‐ups/screening/GP visits</td><td>4.1.1 General preventive examination</td></tr><tr><td>4.5 Postgraduate training for staff</td><td>4.2.3 No physicians graduated</td></tr><tr><td>4.6 Manpower</td><td>4.2.2 Manpower; employment</td></tr><tr><td>4.7 Health promotion</td><td>4.1.2 Health promotion</td></tr><tr><td>4.8 Vaccination</td><td>4.1.1 Vaccination coverage</td></tr></tbody></table> </ephtml> </p> <p>Table 1 shows the health indicators that were thought most relevant to gathering information about aspects of the health of people with ID. To visualize the connections between these results and the indicators previously developed for the general population in the European communities, the last column of Table 1 shows the corresponding items from the ECHI list ([<reflink idref="bib10" id="ref32">10</reflink>]). In the draft list, for example, body mass index was chosen because obesity is a grave health problem amongst people with ID. The literature documents a higher prevalence of obesity among people with ID than in the general population, data are available and easy to collect, and this measurement can easily be used to monitor actions aimed at reducing overweight ([<reflink idref="bib2" id="ref33">2</reflink>]; [<reflink idref="bib3" id="ref34">3</reflink>]).</p> <hd id="AN0024977150-8">Literature and database searches</hd> <p>Subsequently, partners undertook a literature review using PubMed to collate evidence on each of the potential indicators. The literature search aimed at finding articles specific to populations with ID, publications highlighting the importance of an indicator for people with ID, prevalence estimates of potential indicators and possible measurement tools for indicators. Furthermore, partners were requested to submit evidence from national and regional literature, databases and policy papers in favour of indicators, and to continue consulting with stakeholders.</p> <p>The literature review revealed no systematic monitoring of the health of people with ID across the member states, nor could they be identified in population‐wide national or international databases such as Health Interview or Health Examination Surveys. Two national data sets were identified. In Ireland, people with ID who are in contact with services are registered on the National Intellectual Disability Database, but these data are not population‐based ([<reflink idref="bib1" id="ref35">1</reflink>]). In the Netherlands, people with ID who are registered in general‐practice databases may be identified ([<reflink idref="bib21" id="ref36">21</reflink>]). The diversity in health care systems throughout the countries made it impossible to apply those systems across the participating states.</p> <hd id="AN0024977150-9">Final indicator set</hd> <p>In light of the results of the literature search, partners reviewed critically the draft list of 27 indicators and, at their last meeting at Troina, Sicily in April 2004, agreed unanimously on a final list of 18 indicators (Table 2). Selection of each indicator in the final set was guided by the quality and quantity of supportive literature, the capacity to operationalize it, and the value of each for advancing knowledge about the health of persons with ID. Some indicators were thought to overlap with others, and subsequently removed. Others were renamed or collated into a newly formulated indicator.</p> <p>2 Final set of health indicators for people with intellectual disabilities (ID)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th><bold>Category</bold></th><th><bold>Health indicator</bold></th><th><bold>Operationalization</bold></th></tr></thead><tbody valign="top"><tr><td>Demographics</td><td>1.1 Prevalence</td><td>Proportion of people with ID within a population.</td></tr><tr><td>1.2 Living arrangements</td><td>Proportion of people with ID who spend the majority of their week resident in: family home (semi) residential setting, psychiatric hospital, nursing home, other setting.</td></tr><tr><td>1.3 Daily occupation</td><td>Proportion of people with ID by daily occupation and by number of hours worked.</td></tr><tr><td>1.4 Income/socio‐economic status</td><td>Annual income from salary, wages, sickness/invalidity benefit, other income sources compared with minimum wage for other inhabitants of the same country.</td></tr><tr><td>1.5 Life expectancy</td><td>Number of years of life that can be expected on average in the population of people with ID, at certain ages, and for various levels of disabilities.</td></tr><tr><td>Health status</td><td>2.1 Epilepsy</td><td>Standardized death rate for people with ID and epilepsy, seizure rate, hospital admissions for epilepsy. Proportion of people with ID and epilepsy within a population.</td></tr><tr><td>2.2 Oral health</td><td>DMFT: the number of decayed, missing or filled permanent teeth.</td></tr><tr><td>2.3 Body mass index</td><td>Body weight (kg) divided by height (m) squared.</td></tr><tr><td>2.4 Mental health</td><td>Proportion of population reaching criterion for psychiatric disorder using a standardized assessment tool specific for people with ID.</td></tr><tr><td>2.5 Sensory capacities</td><td>Proportion of people with ID experiencing problems in visual and/or hearing functions.</td></tr><tr><td>2.6 Mobility</td><td>Capacity to walk independently or to be wheelchair‐bound, on a five‐point scale.</td></tr><tr><td>Determinants  of health</td><td>3.1 Physical activity</td><td>Proportion of people with ID who practise exercise at various levels.</td></tr><tr><td>3.2 Challenging behaviour</td><td>Proportion of population reaching criterion for challenging behaviour using a standardized assessment tool specific for people with ID.</td></tr><tr><td>3.3 Psychotropic medication use</td><td>Percentage of population who have used psychotropic medication in the past 4 weeks.</td></tr><tr><td>Health systems</td><td>4.1 Hospitalization and contact with health care professionals</td><td>Number of nights spent in hospital over the last 12 months.</td></tr><tr><td>Proportion of the population who consulted a doctor/health profesional/dentist during the past 12 months.</td></tr><tr><td>4.2 Health check</td><td>Proportion of population who have received a medical check‐up in the previous 12 months.</td></tr><tr><td>4.3 Health promotion</td><td>Women with ID who have received a mammogram and/or a PAP smear in the preceding 2 or 3 years. Adults with ID who have had blood pressure measured in the last 2 years and/or have had blood cholesterol screening in the last 5 years.</td></tr><tr><td>Presence of accessible information on screening procedures, targeted at people with ID.</td></tr><tr><td>4.4 Specific training for physicians</td><td>Number of hours of ID‐specific training on undergraduate medical curriculum and/or to primary care physicians in training.</td></tr></tbody></table> </ephtml> </p> <hd id="AN0024977150-10">Conclusion</hd> <p>This method of multistep focus group consultation within and between representatives of 13 EU member states allowed us to prepare a health indicator set that is applicable as a tool to collect data and produce an overview of the health of people with ID in the member states. All partners reached consensus about the final set of 18 indicators. This method of developing an indicator set that is aligned with the ECHI will permit investigators to compare key aspects of the health of people with ID with those of people in the general population within Europe. Doing so will gather information on apparent health disparities and provide evidence to inform those charged with making and implementing policies addressing health and health care for people with ID.</p> <hd id="AN0024977150-11">Applying the indicators: Pomona 2</hd> <p>The new European Community Action Programme ([<reflink idref="bib6" id="ref37">6</reflink>]) has named three general objectives: health information; rapid reaction to health threats; and health promotion through addressing health determinants. The European Commission agreed in December 2004 to fund a second project, Pomona 2, whose purpose is to improve health information and knowledge about people with ID in Europe by applying the set of indicators and gather comparable data in 14 countries: Austria, Belgium, Finland, France, Germany, Ireland, Italy, Lithuania, the Netherlands, Norway, Romania, Slovenia, Spain and the UK (Wales). The group of partners includes most of those who took part in Pomona 1. In addition, there are representatives from two accession countries, Lithuania and Slovenia; Romania, which intends to enter the EU in the near future; and Norway, a member of the European Economic Area.</p> <p>The Pomona 2 project started its activities in May 2005 at a first meeting of all partners in Rome. Its primary tasks are to operationalize the indicator set; translate the survey protocol into relevant languages; collect data amongst sample groups of participants; and to disseminate the project through the participating countries, their representatives and stakeholders. The foremost aim of participants is to gather evidence about health disparities amongst people with ID, using their findings as a basis for developing policies to achieve better health status, better health outcomes on behalf of people in this group, and to develop effective and efficient health systems that include people with ID.</p> <ref id="AN0024977150-12"> <title> References </title> <blist> <bibl id="bib1" idref="ref35" type="bt">1</bibl> <bibtext> Barron S. & Mulvany F. (2005) National Intellectual Disability Database Committee. Annual Report. Dublin Health Research Board. 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  Data: Developing Health Indicators for People with Intellectual Disabilities. The Method of the Pomona Project
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  Data: <searchLink fieldCode="AR" term="%22van+Schrojenstein+Lantman-de+Valk%2C+H%2E%22">van Schrojenstein Lantman-de Valk, H.</searchLink><br /><searchLink fieldCode="AR" term="%22Linehan%2C+C%2E%22">Linehan, C.</searchLink><br /><searchLink fieldCode="AR" term="%22Kerr%2C+M%2E%22">Kerr, M.</searchLink><br /><searchLink fieldCode="AR" term="%22Noonan-Walsh%2C+P%2E%22">Noonan-Walsh, P.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+Disability+Research%22"><i>Journal of Intellectual Disability Research</i></searchLink>. Jun 2007 51(6):427-434.
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  Data: Blackwell Publishing. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8599; Fax: 781-388-8232; e-mail: customerservices@blackwellpublishing.com; Web site: http://www.blackwellpublishing.com/jnl_default.asp
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  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Public+Health%22">Public Health</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Personnel%22">Health Personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Conditions%22">Health Conditions</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Promotion%22">Health Promotion</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Public+Policy%22">Public Policy</searchLink><br /><searchLink fieldCode="DE" term="%22Databases%22">Databases</searchLink><br /><searchLink fieldCode="DE" term="%22Data+Collection%22">Data Collection</searchLink><br /><searchLink fieldCode="DE" term="%22Physical+Health%22">Physical Health</searchLink><br /><searchLink fieldCode="DE" term="%22Comparative+Analysis%22">Comparative Analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Characteristics%22">Family Characteristics</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+Services%22">Medical Services</searchLink>
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  Data: 10.1111/j.1365-2788.2006.00890.x
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  Data: 0964-2633
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  Data: Aim: Recently, attention has focused on the health inequalities experienced by people with intellectual disabilities (ID) when compared with the general population. To inform policies aimed at equalizing health opportunities, comparable evidence is needed about the aspects of their health that may be amenable to intervention. Method: Applying the framework of the European Community Health Indicators (ECHI) for the general population, the Pomona group developed a set of health indicators reflecting aspects of the health of people with ID: socio-demographic data, health status, health determinants and health systems. Results: This paper documents the procedures that partners carried out in 13 European countries. The process comprised a search for evidence in published literature; consultation with advocates, family members and health professionals; and analyses of national and international databases. Indicators were selected if they were appraised as important, useful, measurable and if resulting data would enable comparisons between the health of people with ID and that of the general population. Conclusion: The thus developed indicator set that is aligned with ECHI will permit investigators to compare key aspects of health of people with ID with those of people in the general population within Europe. The final set of 18 indicators will be applied in the Pomona 2 project (2005-08) to gather information about the health of samples of adults in 14 participating European countries.
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