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Community Eye Health JOURNAL VOLUME 29 | ISSUE 93 | 2016 Everyone matters EDITORIAL Inequality and inequity in eye health Johannes Trimmel Azahara Sánchez/IAPB Director: Policy and Advocacy, International Agency for the Prevention of Blindness (IAPB), Vienna, Austria. jtrimmel@iapb.org According to the 2010 Global Burden of Disease (GBD) study, the global prevalence of blindness (age-standardised) has declined from 0.60% in 1990 to 0.47% in 2010.1 This seems to indicate that an increasing number of people have access to good eye health services. However, this improvement is not equally distributed within and across nations. The GBD study also showed that 60% of blindness worldwide is among women, underlining that gender equity in eye health has not yet been achieved. There are several other studies which show how inequitable access to eye health services is worldwide. A recent People living in rural areas or in poverty are often unable to access eye care, even assessment of avoidable blindness when it is available free of charge. It is important to bring eye care closer to these and visual impairment in seven Latin communities, for example by offering visual acuity screening in the community. CAMEROON American countries concluded that the prevalence of blindness and moderate the high national cataract surgical rate A systematic review of barriers to visual impairment was concentrated (CSR) of 5,935 cataract operations cataract surgery in Africa4 (which involved among the most socially disadvantaged, per million population per year. A 2010 reviewing 86 articles, including 12 and that cataract surgical coverage and study in Gujarat, India concluded that, RAAB, 10 quantitative and 5 qualitative cataract surgery optimal outcome were despite an even higher reported CSR of studies) showed variability in the study concentrated among the wealthiest.2 10,000, cataract remained the predom- outcomes. In the RAAB studies, barriers The same study showed that unoperated inant cause of blindness and visual related to awareness and access were cataract remained the most common impairment and blindness remained a more commonly reported. Other studies cause of blindness in Argentina, despite significant problem among the elderly.3 reported cost as the most common barrier. Some qualitative studies INEQUALITY AND INEQUITY: WHAT ARE WE TALKING ABOUT? tended to report community and family Elmien Wolvaardt Ellison described as inequities, a word which dynamics as barriers to cataract surgery. Editor: Community Eye Health captures the unfairness of the situation. Overall, the systematic review found that Journal, International Centre for Eye Health, London, UK. Equal provision of eye health does not the CSR was lower in females in 88.2% create equity: it is important to ensure of the studies. These major barriers According to the World Health Organi- that eye care provision is proportional point to underlying factors of unequal zation, inequalities in health can exist to need (see Figure 1 on page 3). For access: illiteracy and low educational for various reasons, some of which are example, women are often much more levels, poverty and economic hardship, biological (e.g. a higher incidence of likely than men to have age-related no physical access (distance), and the cataract in people over 60 years of age). cataract. An equal number of operations socio-cultural situation. If these inequalities are avoidable, While, increasingly, data on eye health however – e.g. if services were made for women and men would therefore be provision are collected separately by more affordable – then they are better inequitable, as women’s needs are greater. Continues overleaf ➤ COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 1
EDITORIAL Continued 1 Inequality and inequity in eye gender, age and economic situation environment, insecurity and violence, health (known as ‘disaggregation of data’), social exclusion, lack of participation, 4 Tackling inequalities and inequity there is less information available for disempowerment, a lack of self-esteem, in eye heath: can the SDGs help ethnic minorities, migrants and people and more. us? with disabilities. In the United Kingdom, The multidimensional understanding of 5 Overcoming challenges in the people from black and minority ethnic poverty is reflected in the Sustainable UK’s National Health Service communities are at greater risk of some Development Goals (SDGs, see page 4). of the leading causes of sight loss, and Adopted by the UN General Assembly in 6 Measuring inequalities in eye care: adults with learning disabilities are 10 September 2015, they comprehensively the first step towards change times more likely to be blind or partially address the economic, social and 8 Putting women’s eyesight first sighted than the general population.5 environmental dimension of sustainable 9 How to ensure equitable access The World Report on Disability6, development. There is a strong focus on to eye health for children with jointly produced by the World Health tackling the systemic issue of inequity disabilities Organization (WHO) and the World Bank, and a promise to ‘leave no one behind’. 10 POSTER states that the affordability of health The World Health Organization action plan Assisting people who are services and transportation are two main called Universal Eye Health: A Global visually impaired barriers for people with disabilities to Action Plan 2014-20198 has established 12 The importance of assessing access health services. In low-income universal access and equity, human vision in disabled children – and countries, 36% of non-disabled females rights, and empowerment of people with how to do it and 40% non-disabled males could visual impairment as core principles. 14 Eye care in rural communities: not afford the visit to the health service reaching the unreached in provider, compared to 61% (female) and What can we do? Sunderbans 59% (male) of disabled people. A recent To tackle inequities in eye health, a 15 Improving access to eye care study from Sightsavers on data disaggre- number of measures can be taken. First for older people: experiences in gation by disability in India and Tanzania7 of all, as eye care providers we should South Africa showed that, despite the eye health commit to providing eye health services of programmes being open to all, the level the same quality for everybody, 16 CLINICAL SKILLS of access of people with disabilities varied irrespective of age, gender, wealth, Assessing vision in a baby greatly. ethnicity, place of residence, education or 17 EQUIPMENT AND MAINTENANCE As these examples show, there are disability status. Just as important, as Understanding and caring for many dimensions to inequity. Inequity can individuals we should treat everyone the direct ophthalmoscope be understood as a reflection of multidi- equally on a personal level: everybody 18 TRACHOMA UPDATE mensional poverty which, besides income turning up at an eye health clinic or 19 CPD QUIZ poverty, includes poor health, low levels hospital should enjoy the same level of 20 NEWS AND NOTICES of education, lack of water and sanitation, interest, respect and support. As authors an unhealthy or unsafe residential we recommend awareness training of Community Eye Health Editor Editorial assistant Anita Shah Address for subscriptions JOURNAL VOLUME 29 | ISSUE 93 | 2016 Elmien Wolvaardt editor@cehjournal.org Design Lance Bellers Printing Newman Thomson Anita Shah, International Centre for Eye Health, London School of Hygiene and Tropical Medicine, Everyone matters Keppel Street, London Editorial committee EDITORIAL Inequality and inequity in eye health CEHJ online WC1E 7HT, UK. Allen Foster Johannes Trimmel Azahara Sánchez/IAPB Director: Policy and Advocacy, Visit the Community Eye Health Journal online. International Agency for the Prevention of Blindness (IAPB), Vienna, Austria. Tel +44 (0)207 958 8336 jtrimmel@iapb.org According to the 2010 Global Burden of Clare Gilbert Disease (GBD) study, the global preva- All back issues are available as HTML and PDF. lence of blindness (age-standardised) has declined from 0.60% in 1990 to 0.47% Email admin@cehjournal.org in 2010.1 This seems to indicate that an increasing number of people have access Nick Astbury Visit: www.cehjournal.org to good eye health services. However, this improvement is not equally distributed within and across nations. The GBD study also showed that 60% of blindness worldwide is among Daksha Patel women, underlining that gender equity in eye health has not yet been achieved. Correspondence articles There are several other studies which show how inequitable access to eye health services is worldwide. A recent People living in rural areas or in poverty are often unable to access eye care, even Richard Wormald assessment of avoidable blindness when it is available free of charge. It is important to bring eye care closer to these Online edition and newsletter and visual impairment in seven Latin communities, for example by offering visual acuity screening in the community. CAMEROON We accept submissions of 800 words about American countries concluded that the prevalence of blindness and moderate the high national cataract surgical rate A systematic review of barriers to visual impairment was concentrated (CSR) of 5,935 cataract operations cataract surgery in Africa4 (which involved among the most socially disadvantaged, per million population per year. A 2010 reviewing 86 articles, including 12 Matthew Burton and that cataract surgical coverage and study in Gujarat, India concluded that, RAAB, 10 quantitative and 5 qualitative Sally Parsley: web@cehjournal.org cataract surgery optimal outcome were despite an even higher reported CSR of studies) showed variability in the study readers’ experiences. Contact: concentrated among the wealthiest.2 10,000, cataract remained the predom- outcomes. In the RAAB studies, barriers The same study showed that unoperated inant cause of blindness and visual related to awareness and access were cataract remained the most common impairment and blindness remained a more commonly reported. Other studies Hannah Kuper cause of blindness in Argentina, despite significant problem among the elderly.3 reported cost as the most common barrier. Some qualitative studies INEQUALITY AND INEQUITY: WHAT ARE WE TALKING ABOUT? tended to report community and family Anita Shah: correspondence@cehjournal.org Elmien Wolvaardt Ellison described as inequities, a word which dynamics as barriers to cataract surgery. Editor: Community Eye Health captures the unfairness of the situation. Overall, the systematic review found that Journal, International Centre for Eye Priya Morjaria the CSR was lower in females in 88.2% Consulting editor for Issue 93 Health, London, UK. Equal provision of eye health does not create equity: it is important to ensure of the studies. These major barriers According to the World Health Organi- that eye care provision is proportional to point to underlying factors of unequal zation, inequalities in health can exist need (see Figure 1 on page 3). For access: illiteracy and low educational for various reasons, some of which are example, women are often much more levels, poverty and economic hardship, biological (e.g. a higher incidence of no physical access (distance), and the G V Murthy cataract in people over 60 years of age). likely than men to have age-related Sally Crook cataract. An equal number of operations socio-cultural situation. If these inequalities are avoidable, While, increasingly, data on eye health however – e.g. if services were made for women and men would therefore be provision are collected separately by © International Centre for Eye Health, London. Articles more affordable – then they are better inequitable, as women’s needs are greater. Continues overleaf ➤ Fatima Kyari COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 1 may be photocopied, reproduced or translated provided “Improving eye health through David Yorston Please support us these are not used for commercial or personal profit. the delivery of practical Sally Crook We rely on donations/subscriptions from charities Acknowledgements should be made to the author(s) and high-quality information for Serge Resnikoff and generous individuals to carry out our work. to Community Eye Health Journal. Woodcut-style the eye care team” Babar Qureshi We need your help. graphics by Victoria Francis and Teresa Dodgson. Janet Marsden Volume 29 | ISSUE 93 Subscriptions in high-income countries cost UK ISSN 0953-6833 Noela Prasad Supporting VISION 2020: £100 per annum. Disclaimer Regional consultants The Right to Sight Contact Anita Shah Signed articles are the responsibility of the named Hugh Taylor (WPR) authors alone and do not necessarily reflect the views of Leshan Tan (WPR) admin@cehjournal.org the London School of Hygiene & Tropical Medicine (the GVS Murthy (SEAR) or visit the journal website: School). Although every effort is made to ensure R Thulsiraj (SEAR) www.cehjournal.org/donate accuracy, the School does not warrant that the Babar Qureshi (EMR) information contained in this publication is complete and Mansur Rabiu (EMR) Subscriptions correct and shall not be liable for any damages incurred Hannah Faal (AFR) Readers in low- and middle-income countries get as a result of its use. Kovin Naidoo (AFR) the journal free of charge. 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means for transport, and other reasons. Angus Maguire/Interaction Institute for Social Change Positive and pro-active (affirmative) action is required to ensure that upcoming cost-coverage schemes are not only effective for the educated and socially included, but also reach out to the poorest. Affirmative action is not discriminatory, as the UN Convention on the Rights of Persons with Disabilities states in Article 5 (4): ‘Specific measures which are necessary to accelerate or achieve de facto equality of persons with disabilities shall not be considered discrimination under the terms of the present convention.’ A popular quote these days is: ‘If you can’t measure it, you can’t manage it’. While this rightly can be questioned – as there are many qualities in life not easily measurable – evidence also shows that it is very hard to achieve political support for addressing inequities in eye health Figure 1. Providing equal eye care services is not enough – equity is only achieved unless there is reliable data. Accordingly, when the eye care services meet the needs of different groups of patients the SDGs requires that high-quality, staff members and setting quality identified – ignorance, lack of awareness, timely and reliable data – disaggregated standards that are monitored regularly. cultural traditions, to name a few – need by income, gender, age, race, ethnicity, Eye care units can be made more to be effectively addressed at family and migratory status, disability, geographic accessible for people with disabilities as community level. As these barriers are not location (and other characteristics outlined in the CBM Guide ‘Inclusion specific to eye health, there needs to be relevant in national contexts) – is made made easy in eye health programmes’.9 either partnerships with other community- available. This should be standard for the Eye care providers are also employers based services (primary health care and eye health sector as well. and can support inclusion and diversity community development in general) or a by recruiting a wide spectrum of staff policy framework which addresses these Conclusion members: those with or without disabil- issues effectively. This is particularly relevant Tackling unequal access to eye health ities, from both genders (and transgender), for eye care providers who implement services and inequity in eye health all sexual orientations, and all population community outreach activities. requires a people-based view and an groups. This will not only support In any community initiative, partic- approach that reaches far beyond communication with patients, but also ipation and empowerment are key. By service provision. Moving outside the help to increase understanding and specifically addressing people, families eye health sector (or silo) is essential in awareness among staff members. and groups who are socially excluded in order to reduce inequity in eye health. local communities we can tackle inequity The current international development A change in perspective and help to change the behaviour of frameworks (see article on page 4), which However, offering equal eye health mainstream society. also put a strong emphasis on domestic services to everyone will not by itself lead resource mobilisation, provide an excellent to equity in eye health services. Equal A helpful policy framework framework which needs to be used. services will only be effective at reducing The Sustainable Development Goal on References inequity if every person in the community health calls for efforts to ensure healthy 1 Bourne R and Ackland P. The Global Burden of Disease (2010) Study. IAPB Briefing Paper. http://www.iapb. has the same starting point (Figure 1). lives and wellbeing at all ages. To achieve org/resources/gbd-numbers-and-prevalence Evidence and life experience show that this, a number of political decisions 2 Silva JC, Mújica OJ et al. A comparative assessment of this is not the case, and that an equality need to be taken and policy choices avoidable blindness and visual impairment in seven Latin American countries: prevalence, coverage, and of service provision alone is insufficient to made. Besides lack of knowledge and inequality. Rev Panam Salud Publica. 2015;37(1). promote fairness and justice. awareness, cost is the most prominent Available online: http://tinyurl.com/blind-LA 3 Murthy GV, Vashist P et al. Prevalence and causes of visual What is needed to address inequity factor leading to inequity in eye health. impairment and blindness in older adults in an area of in eye health effectively is a change of Universal health coverage and social India with a high cataract surgical rate. Ophthalmic Epidemiol. 2010;17(4):185-95. Available online: perspective. Rather than putting the insurance (or cost coverage) schemes are http://www.ncbi.nlm.nih.gov/pubmed/20642340 eye care service unit at the centre of currently being put in place in many 4 Aboobaker S, Courtright P. Barriers to cataract surgery planning and action, it is necessary to countries to help cover the cost of health in Africa: A systematic review. Middle East Afr J Ophthalmol. 2016;23:145-9. Available online: http:// look at eye health programmes from the care. These must be designed to actively www.meajo.org/text.asp?2016/23/1/145/164615 point of view of the person needing eye and effectively include people from disad- 5 www.rnib.org.uk/knowledge-and-research-hub/ key-information-and-statistics health services and what they need to vantaged and poor populations. Simply 6 WHO. World report on disability 2011. Available from enjoy a full and healthy life. The best eye reviewing whether or not these groups are www.who.int/disabilities/world_report/2011/en/ clinic will not deliver what people need equally included is not enough: there is a 7 Sightsavers. Everybody counts: lessons from Sightsavers’ disability data disaggregation project. 2015. Available when there are barriers that prevent high likelihood that poorer people (under- from http://preview.tinyurl.com/disabilitySS them from arriving there! stood in terms of multidimensional 8 www.who.int/blindness/actionplan/en/ 9 CBM. Inclusion made easy in eye health programmes. Engagement at the community level is poverty) do not seek the services they Available from www.cbm.org/disability-inclusive- very much needed. Many of the barriers need due to ignorance, fear, lack of eye-health © The author/s and Community Eye Health Journal 2016. This is an Open Access COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 3 article distributed under the Creative Commons Attribution Non-Commercial License.
GLOBAL ACTION Tackling inequality and inequity in eye health: can the SDGs help us? Zoe Gray • Advocating for the inclusion of Advocacy Manager: eye health services (for example International Agency for the trichiasis surgery, cataract Prevention of Blindness surgery and low vision and (IAPB), London, UK. zgray@iapb.org rehabilitation services) within universal health coverage and The Sustainable Development social insurance schemes, in a Goals (SDGs)1 were adopted at way that enables access for the the United Nations (UN) General poorest and most marginalised. Assembly in September 2015. • Lobbying to ensure that the They are a set of goals and targets health workforce indicator is that all UN member states have taken up at national level and committed to achieving: ‘to end that there is a specific focus on poverty, protect the planet, and eye health workers. ensure prosperity for all’. A major As countries progress on this, there • Lobbying for the inclusion of cataract emphasis of the SDGs is to ‘leave no one should be opportunities to get eye health surgical coverage (CSC) as a national behind’; that is, to reach everyone, included within essential packages indicator, which will help prioritise action including the poor and the marginalised. in social insurance or cost coverage on cataract surgery. CSC is recognised The health goal (Goal 3: Good health) schemes, which can greatly benefit within the WHO/World Bank universal is to ensure healthy lives and promote eye health, including helping to reduce eye health monitoring report3 as an wellbeing for all, at all ages. One of the inequalities by reducing patients’ out-of- important indicator of older people’s targets within Goal 3 is about universal pocket payments. access to health care, which can help health coverage (defined as access for all Currently, there is a significant to support arguments for CSC as an people to health services without suffering political push for countries to mobilise indicator. financial hardship). There is also consid- their own resources, including financial erable focus on attending to the needs of resources, in order to meet their popula- The development of plans and people with disabilities and vulnerable tion’s needs (e.g. health), rather than indicators, and what part of government groups. Goal 3’s emphasis on tackling relying on international aid. This makes will take the lead, will differ from country health inequity and promoting access for it critical to get involved with discus- to country. UN country teams, interna- all people complements the approach of sions about universal health coverage on tional agencies in-country and/or health the World Health Organization (WHO) national/country level. ministries should be useful points of action plan called Universal Eye Health: There are other SDG goals and targets, contact to advise about these processes. A Global Action Plan 2014-2019.2 such as on inclusive education, which Working with other relevant organisa- may provide scope for advocating at tions, both within and outside eye health, The importance for eye the national level, such as promoting can be very effective, making it possible health eye screening in schools as a means to to deliver joint messages and lobby There are a number of targets and improve access to inclusive education. collectively. indicators within Goal 3: Good Health which are very relevant for eye health. Including eye health when Accountability The inclusion of Neglected Tropical implementing the SDGs Programmes and service delivery must Diseases (NTDs) in the targets is a major be monitored to ensure that efforts are UN member countries have all made achievement: the global indicator is the having the intended impact and reaching a major commitment to implement ‘number of people requiring interventions those most in need. Monitoring and the SDGs. They are now starting to against NTDs’. If this is adequately research is needed to track progress and develop their own national action plan addressed in national level indicators, to support calls for new approaches when or strategy, with national targets and policies and practices, it can significantly there are challenges or failures. indicators to measure their progress support efforts to manage and control It is very likely that some countries against the SDG goals. National strat- blinding NTDs such as onchocerciasis and will be selective and prioritise some of egies and indicators will be particularly trachoma. These are largely diseases of the SDG goals and targets rather than important as they will direct funding poverty and addressing them can help to covering all of them. Advocacy is needed and government commitment towards reduce eye health inequalities. to hold governments to account and help programmes and services. The indicator for the Goal 3 target on them to achieve the stated ideals and It is beneficial to get involved in these health financing and human resources aims of the SDGs. national processes and ensure that eye includes a requirement for data collection There is an important role for the eye health targets and indicators are included on ophthalmologists at the national level. health community to promote the ideas of – and that there is adequate action to This information can help to strengthen ‘leave no-one behind’ and equity, whether achieve them. Here are a few examples. advocacy to improving the size and distri- in service delivery or in advocacy. bution of the eye health workforce – which • Ensuring that the national strategies, References is essential to address rural/urban eye implementation and indicators 1 https://sustainabledevelopment.un.org/sdgs health inequalities. adequately address the NTD indicator 2 www.who.int/blindness/actionplan/en/ 3 www.iapb.org/resources/universal-coverage- The Goal 3 target about universal and target (in countries where blindness gap-action-plan-health-financing-health-systems- health coverage is very important. caused by NTDs remains a problem). who-documents-othermonitoring report 4 COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 © The author/s and Community Eye Health Journal 2016. This is an Open Access article distributed under the Creative Commons Attribution Non-Commercial License.
INEQUALITY IN THE UK Overcoming challenges in the UK’s National Health Service Andy Cassels-Brown Darren Shickle John Buchan We have identified that the number of andy.cassels-brown people registered as blind in communities @nhs.net with high levels of deprivation and large ethnic populations is significantly lower Leeds Ophthalmic Public Health Team, Academic Unit of Public Health, University of Leeds, UK. than expected, considering what is known Working in an eye clinic in Dewsbury, prevalence, late presentation, ethnicity about the incidence of blindness in these West Yorkshire (with its large South and socio-economic deprivation. These communities. This suggests inequality in Asian migrant population) in the 1990s, studies were a clear demonstration of the access to the registration system, which Andy Cassels-Brown noticed the large inequalities present in the UK, despite its in turn excludes people from the state number of young South Asian patients developed economy and world-renowned support offered to those registered as who presented with much more advanced National Health Service (NHS), which being visually impaired or blind. keratoconus than their Caucasian offers universal access to health care. In summary, despite our well-resourced counterparts, who tended to be detected Along the way, the team has tried National Health Service, there are many much earlier. This indicated an inequality to honour the well-known adage: examples of inequality in access to in access to eye care services which, ‘no survey without service’ and has services, and care often depends on where we discovered, was made worse as the undertaken health promotion campaigns you live (known in the UK as the postcode Asian patients frequently had preventable for glaucoma, diabetes and smoking lottery). Our biggest challenges now associated allergic conditions (such as cessation in Leeds, including the use of include increasing detection, prevention allergic conjunctivitis or eczema) and a community radio and health promotion and curative service capacity to meet strikingly strong family history of kerato- stands at festivals and carnivals. We the increase in demand for hospital eye conus.1 Better access to eye care would have also trained link workers in many care in England (due to the ageing of the permit earlier identification of family locations across the city to talk to population and an increase in treatment members with the condition and, these community groups, community support options, e.g. for wet ARMD). days, prevention of progression by means workers, social workers and staff Our response in Leeds, as with much of cross-linking to stabilise the kerato- members in elderly care homes about the of the rest of the world, is to train our conic cornea. importance of having regular sight tests. primary care workforce and continue to After doing a Masters in Community As part of the VISION 2020 Leeds decentralise eye care by dealing with Eye Health at ICEH London in 2000, programme, we developed consultant-led lower complexity cases in consultant-led, Andy cycled daily to the eye department multiprofessional Community Eye Centres. multiprofessional community settings, at St James’s Hospital, through Leeds’ The centres are located in specific rather than in hospital. We are devel- multi-ethnic suburb of Chapeltown. Andy communities around Leeds. They help oping a multi-disciplinary academy to started to wonder why there were not to target inequalities by offering eye care train ophthalmic nurses, optometrists, more African-Caribbean patients with services to people who would otherwise orthoptists, health care assistants and glaucoma coming to St James’ Hospital, face socio-economic and geographical allied health professionals in line with an given the higher prevalence and earlier barriers to accessing eye care. emerging ‘competency framework’5 which onset (but often all-too-late presen- The Leeds Ophthalmic Public Health is currently being developed in the UK. tation) in this population group. Research Team have continued to research and And finally, before it is too late, we are also confirmed2 that there were no optometry pilot innovative ways to deliver primary starting to develop strategies to be resilient practices in this socio-economically eye care in areas of deprivation, including against the impact of environmental deprived community, and that people the provision of free sight tests and free change and to reduce health care’s found it difficult and expensive to come prescription spectacles in the community. damaging environmental footprint. into the city centre for eye tests Further reading and to pay for prescription Leeds Public Health Team 1 Georgiou T, Funnell CL, Cassels-Brown A, spectacles. O’Conor R. Influence of ethnic origin on the incidence of keratoconus and associated The Leeds Ophthalmic Public atopic disease in Asian and white patients. Health Team (which includes Eye 2004;18(4):379-83. Darren Shickle, John Buchan 2 Awobem JF, Cassels-Brown A, et al. Exploring glaucoma awareness and the utili- and other colleagues) is part of zation of primary eye care services: community the UK’s National Health Service perceived barriers among elderly African Caribbeans in Chapeltown, Leeds. Eye. and is based at the University of 2009;23(1):243. Leeds. The team undertook a 3 Day F, Buchan J, Cassels-Brown A et al, A Glaucoma Health Equity Profile Glaucoma Equity Profile: Correlating Disease Distribution With Service Provision And needs assessment across Uptake in a Population In Northern England. the whole city of Leeds, which Eye 2010;9:1478-85. 4 Kliner M, Fell G, et al. Diabetic retinopathy confirmed that late presentation equity profile in a multi-ethnic, deprived was highly linked with socio- population in Northern England. Eye 2012;26(5):671-7. economic deprivation.3 A VISION 5 Competency Framework for expanded 2020 Equity Profile conducted ophthalmic roles for Ophthalmic Nurses, across Leeds and Bradford4 also The Leeds Ophthalmic Public Health Team and students Optometrists, Orthoptists and Ophthalmic Clinical Scientists. https://www.rcophth. confirmed the links between high promoted eye health at Leeds Carnival. UK ac.uk/2016/01/competency-framework/ © The author/s and Community Eye Health Journal 2016. This is an Open Access COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 5 article distributed under the Creative Commons Attribution Non-Commercial License.
QUANTIFYING INEQUALITY Measuring inequality in eye care: the first step towards change Jacqui Ramke Equality vs equity University of New South Wales, School of Social Sciences, Sydney, New South We must remember that equal rates of Wales, Australia. treatment between subgroups (such as surgery) will not necessarily mean we are ‘Health inequalities’ are differences in delivering equitable services. For health between different subgroups of a example, the Nigerian National population1, for example women/men, Blindness and Visual Impairment Survey Lance Bellers/ICEH people with/without disabilities, and showed that, although women had urban/rural dwellers. received almost half of all cataract Many of us have insufficient information surgery (47%), they still suffered from to understand the nature and extent of the two-thirds of the bilateral cataract inequalities that exist, and whether our Gathering appropriate information helps blindness (67%)4 in the country. This services are effective. This lack of information us to understand inequality. TANZANIA means that Nigerian women must receive restricts our ability to plan appropriate much more than 50% of all the strategies to reduce inequality, and to track The acronym ‘PROGRESS’ can help us operations in order to reduce this inequity. our progress towards equitable eye health. to think about which subgroups to Fortunately, we can obtain this infor- monitor, as it sets out a range of social mation by monitoring health inequality. factors that are often associated with How do we monitor Monitoring is a process that helps to health inequality (Figure 1.)2 Some of inequality? determine whether policies and practices these have obvious subgroup categories We can incorporate inequality monitoring are working, and whether change is (e.g. age, gender, disability), but others into our hospital or clinic’s existing needed. There are two main sources of require us to adopt clear and consistent system, whether electronic or manual. data we can use to monitor inequality – definitions, e.g. socioeconomic status, The monitoring cycle is shown in population-based surveys, and education level, area of residence (rural Figure 2. information collected from our clinics. vs urban) or occupation category. We have already selected the relevant Ideally, we would use information from health and social indicators and chosen Figure 1. PROGRESS: social factors both of these data sources. However, few the subgroups we want to monitor. The associated with health inequality2 of us have the time and money to next step is to collect the data. If we want implement population-based surveys, so P Place of residence to know if there is inequality in who this article will focus on monitoring R Race, ethnicity, culture and language receives cataract surgery, for example, we inequality using clinic-based data. For can begin to record, on a regular basis O Occupation example, you may have noticed that, (e.g. monthly), the number of people in compared to the community served by G Gender and sex each of our selected subgroups who are your hospital, most of the people under- R Religion receiving surgery. going cataract surgery are from the E Education Figure 2: Cycle of health monitoring families of government employees (and S Socioeconomic status very few are farmers) or from a ‘wealthy’ S Social capital Select relevant area in town (and very few from poorer Plus Age, other disability, migratory status health and social areas, or rural areas), or from the most indicators powerful ethnic, religious, or language group (and very few from minority What should we monitor? groups). Or perhaps you have noticed that Once we have identified the subgroups, very few of your surgical patients are we can use any of our routinely collected Implement elderly widows. Collecting clinic-based health indicator(s) to investigate Collect data changes information is a way to confirm or uncover inequalities between the subgroups. these sorts of inequalities. These indicators include: • The prevalence of conditions (e.g. blind- Who should we monitor? ness, visual impairment, trachomatous To reduce inequality, we must identify trichiasis, diabetic retinopathy) which subgroup(s) of the population Report Analyse • Quality of care (e.g. visual outcome (e.g. farmers, people from poorer or results data after cataract surgery). urban areas, or minority groups) are less • Access to services by different groups; able to get access to, and benefit from, e.g. cataract surgical coverage, cataract Adapted from Figure 1.1 of WHO’s Health Inequality our services. Some of us work in settings surgical rate, refractive error correction Monitoring Handbook3 where the Ministry of Health and/or coverage, attendance at diabetic hospital has already identified priority retinopathy screening, ability to pay Once we have collected the data, we subgroups to monitor, so advice and • Eye care service factors; e.g. the can calculate, and then compare, the resources may be available locally. For distribution of eye care facilities and the proportion of cataract surgery delivered others, we will need to decide which eye health workforce, and the availability to each subgroup (e.g. by dividing the subgroups are most relevant to monitor in of subsidised services or financial number of women by the total number our particular setting. protection for vulnerable subgroups. of operations). These figures are often 6 COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016
presented as percentages (the proportion feasible and sustainable in your setting. ultimately achieve universal eye health. multiplied by 100). Another simple way to It is better to begin with a small number For more information on monitoring quantify inequality is to calculate the gap of indicators (such as uptake of cataract inequality, see WHO’s Health Inequality between the subgroups (e.g. subtract surgery by gender and urban/rural Monitoring Handbook: http://www.who. the number of women from the number residence) and collect and analyse int/gho/health_equity/handbook/en/ of men to see how many more men have these accurately and consistently, rather References received surgery). than introducing many measurements 1 Hosseinpoor AR, Bergen N, Koller T, et al. Equity- oriented monitoring in the context of universal health This can be done on a monthly, that take a lot of time and effort; which coverage. PLoS Med 2014;11:e1001727. quarterly and annual basis, and means it will become unsustainable. 2 O’Neill J, Tabish H, Welch V, et al. Applying an equity inequality calculations can be reported You can expand your monitoring system lens to interventions: using PROGRESS ensures consideration of socially stratifying factors to illuminate alongside the total number of operations with more indicators once it is running inequities in health. J Clin Epidemiol 2014;67:56-64. in each subgroup in well-designed tables, smoothly. 3 World Health Organization. Handbook on health inequality monitoring with a special focus on low-and graphs and maps. The information can Monitoring is essential if we are to middle-income countries. Geneva: World Health then be communicated to hospital understand the nature and extent of Organization, 2013. 4 Abubakar T, Gudlavalleti MV, Sivasubramaniam S, administrators and health managers. A inequality in the populations we serve. Gilbert CE, Abdull MM, Imam AU. Coverage of hospital- worked example is provided below. The information must then be used to based cataract surgery and barriers to the uptake of surgery among cataract blind persons in Nigeria: The When expanding your monitoring inform policies, programmes and Nigeria National Blindness and Visual Impairment process, try to be realistic about what is practices to reduce inequities and Survey. Ophthalmic Epidemiol 2012;19:58-66. Worked example Imagine your eye clinic is in an urban centre (population In a report, you would normally include Table 1 (which shows the 150,000) that also serves the surrounding rural district number of operations in each subgroup) and compare the (population 350,000). You conduct intermittent outreach percentages in each subgroup). In addition, you can use the services, and would like to conduct more as you think few rural information about the relative ratio to point out that there were dwellers are coming to your eye clinic. 1.3 times more male than female patients, and 5.3 times more You begin to monitor who is presenting for cataract surgery. urban than rural patients. In the first quarter you conduct no outreach trips and your monitoring data for January to March is shown in Table 1. This information alerts you that rural dwellers, and rural women in particular (of whom there were only 4), are not accessing your Table 1. Tally of cataract operations by gender and area of residence services as much as their urban counterparts. Number of operations You then decide to do more outreach and deliver two outreach activities in the next quarter. The monitoring data for April to Women Men Total June is given in Table 3. Rural 4 31 35 Table 3. Tally of cataract operations after outreach Urban 91 94 185 Women Men Total Total 95 125 220 Rural 35 41 76 You can work out and compare what percentage of the total 62 59 121 Urban number of operations were performed on patients belonging to each subgroup, e.g.: Total 97 100 197 • 57% of patients (125 ÷ 220 x 100) were men • 43% of patients (95 ÷ 220 x 100) were women • 84% of patients (195 ÷ 220 x 100) were urban Table 2. Measures of inequality after outreach • 16% of patients (35 ÷ 220 x 100) were rural Absolute gap Relative gap You can further demonstrate the inequality between women and Difference Ratio men, and between rural and urban dwellers, by calculating the absolute gap (subtract the smaller number from the larger number) Gender Men – Women Men ÷ Women and the relative gap (divide the larger number by the smaller number). 100 – 97=3 100 ÷ 97=1.0 Table 2. Measures of inequality: absolute gap and relative gap Place of Urban – Rural Urban ÷ Rural Absolute gap Relative gap residence 121 – 76=45 121 ÷ 76=1.6 Difference Ratio You might conclude from this that providing outreach services Gender Men – Women Men ÷ Women has been effective in reducing both gender and place of 125 – 95=30 125 ÷ 95=1.3 residence inequalities. You could use this information to Place of Urban – Rural Urban ÷ Rural advocate for regular outreach activities and continue to monitor residence 185 – 35=150 185 ÷ 35=5.3 your services each quarter to identify further changes that are needed. © The author/s and Community Eye Health Journal 2016. This is an Open Access COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 7 article distributed under the Creative Commons Attribution Non-Commercial License.
GENDER Putting women’s eyesight first Damian Facciolo sufficient. Some organisa- Mark Maina/Fred Hollows Foundation Regional Programme tions already disaggregate Manager (Western Pacific): data by gender for analysis, International Agency for the Prevention of Blindness, but it is important that all eye Singapore. care organisations should do so. Data should be carefully Camille Neyhouser Learning and Best Practice analysed and compared to Coordinator & Gender the demographics of the Strategy Coordinator: community. Are there gender The Fred Hollows Foundation, differences in the number Sydney, Australia. of patients? Why do they Two-thirds of blindness and exist? Do the numbers vary visual impairment occurs in on certain days or in different women , and recent prevalence 1 locations? How does the surveys in Vietnam and China gender balance of staff show an imbalance in the members affect the balance of A woman waits to have her patch removed after surgery. KENYA coverage of services across patients? Increasingly, donors expect this data and expect to see some areas. We know that, compared to How can we improve? men, women account for the greater gender issues addressed.4 Although many barriers exist for both men burden of blindness from cataract.2 4 Create opportunities for women and women, gender inequalities makes Women and girls face numerous barriers across the eye health workforce, access harder for women. In November in accessing eye care services and are and support them. Although this 2015, a regional forum (meeting) was less likely to utilise them. varies according to cultural contexts held in Cambodia to focus on improving Understanding gender dimensions is and regions, the gender of eye health eye health for women and girls. an important aspect of public health and workers can affect access to services Knowledge from the forum and from other development. In 2009, Gender was the by female patients. Female eye health effective models will be used to produce a theme for World Sight Day and the focus professionals need to be supported guide for good practice. The forum and mentored. Women often have to of articles in this Journal.3 The World highlighted five practical ways to improve work extra hard to negotiate for Health Organization action plan called services for women and girls. resources to do their clinical work and Universal Eye Health: A Global Action Plan 1 Ensure services are community- must balance family pressures. They 2014-2019’ prioritises equity and it is based. Screening and appropriate also face a greater risk of overt and clear that we need to do more to improve treatment should be provided close to subtle discrimination and violence in services for women and girls. home or in the workplace. Outreach the workplace. Managers of services should be tailored to the programmes, services, clinics and What are the barriers for specific needs of women and girls and hospitals need to be attentive and women and girls? be organised at a time and location responsive to ensure female workers Often, the barriers faced by women are suitable to maximise their participation. are employed, retained and promoted. not fully understood by health care Schools and market places are two 5 Reach higher. Our approach should providers. Greater understanding can be possibilities, but the best ideas and be based on equity, not just equality. achieved through regular data collection advice will come from women In many contexts, it is not enough for (separately for men and women), themselves – therefore encourage service data to report an equal 50/50 knowledge, attitudes and practice (KAP) female community representatives to split between men and women. surveys, satisfaction surveys and gender work with you in programme design. Blindness prevalence is generally analyses. Consultation with both women 2 Tap into the expertise of others. higher for women because they have a and men helps to ensure that services are Partnerships with women’s organisa- longer life expectancy and are more delivered in a way that is gender-sensitive tions, the women’s agency or ministry likely to experience non-communicable and relevant to that community. in the government, maternal and child diseases such as cataract and commu- Lack of access to household resources health services, gender-focused NGOs nicable diseases such as trachoma. and opportunity costs (e.g. loss of income and microfinance networks can Some organisations set firm targets due to the time taken to attend appoint- strengthen and more effectively target that encourage services to reach a ments) prevent women from accessing programmes for women and girls. In higher number of women than men. eye care services. As women are often Cambodia, the Fred Hollows References less educated than men and are less Foundation is working with the Ministry 1 Clayton JA, Davis AF. Sex/Gender Disparities and Women’s Eye Health Current Eye Research 2015 likely to access information outside the of Women’s Affairs to deliver a project 40(2): 102-109 home due to their caretaking role, they to remove the barriers faced by 2 Grey Z and Ackland P. IAPB Cataract Surgical are also less aware of eye health treat- women. Coverage. Finding 3. Page 11. August 2015 http://tinyurl.com/IAPB-catarac ments and services. Women have reduced 3 Disaggregate and analyse data. 3 Courtright P, Lewallen S. Why are we addressing power to make decisions in the household Disaggregating (or splitting) clinical gender issues in vision loss? Comm Eye Health J 2009 22:17 and sometimes de-prioritise their own data by gender and age is critical 4 Crook S. A View from SiB – Gender. 2015. health in favour of others in the family. – just collecting the figures is not www.iapb.org/view-sib-gender 8 COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 © The author/s and Community Eye Health Journal 2016. This is an Open Access article distributed under the Creative Commons Attribution Non-Commercial License.
CHILDREN WITH DISABILITIES How to ensure equitable access to eye health for children with disabilities Hannah Kuper understand the different difficulties However, many children with disabil- Co-director: International Centre for Evidence they face in accessing services in your ities are not enrolled in school, and so in Disability, London School of Hygiene setting. Children with disabilities are will miss out. Linkages can be made with and Tropical Medicine, London, UK not all the same. For example, children local community health workers and also All children need access to good quality who are deaf or hard of hearing will with rehabilitation programmes so that eye care, and this must include children face different difficulties in accessing children with disabilities who don’t go to with disabilities. eye services compared to children with school can still be included. Childhood disability is very common. physical impairments or those with intel- Staff must be trained in disability The World Health Organization (WHO) lectual impairments. It is therefore awareness to make sure that they interact estimates that there are at least 93 very important to work with people with well with children with disabilities and million children with disabilities worldwide, disabilities and their families in the their families. This can include raising which equates to one in twenty children.1 community to find solutions together. As awareness about the rights of children Childhood disability is particularly common the disability movement says: ‘Nothing with disabilities to have access to eye in low- and middle-income countries. about us without us.’ In order to do this,services, challenging negative attitudes, Children with disabilities may have it is useful to link with a local disabledand offering practical training on commu- a particularly high need for eye health persons organisation or other people with nication with children with disabilities. services. This is because eye problems experience of living with disability. Eye health workers can also receive are a common cause of disability in This consultation process will identify the encouragement that the care they children, and children with disabilities are specific things which can be strengthened provide may change the whole life of particularly vulnerable to eye problems. in your setting, from which a disability those children, resulting in their inclusion For instance, one in three children plan of action can be made.2 in education, livelihoods and social with cerebral palsy experiences visual Clinics must be made physically acces- opportunities. Local Disabled People’s impairment. sible for children with disabilities. The Organisations may be able to deliver, or Eye health services will exclude many child should be able to enter the buildingparticipate in, the training. children if they are not accessible to and access the clinics, toilets and Systems can be strengthened to help children with disabilities or if they are washing facilities. It is also important that overcome cost barriers for children with not proactive about ensuring inclusion. equipment can be used to examine and disabilities, as for other marginalised Eyesight is very important for all children, treat children with disabilities, so that they patients. For instance, transport services even more so when children have other can receive the same quality of treatment may be set up or subsidised to help impairments, such as those who are deaf as everyone else. Ideally, physical acces-children with disabilities. or hard of hearing. sibility should be considered when the Formulating a plan is the first step, Even though children with disabil- clinic is being built, but there is much that but it must be carried out. It can be ities have a greater need for eye health, can be done to improve existing facilities. useful to establish a disability committee they may not have equal access to these Outreach eye care services for or focal person to oversee the imple- services, because they face a number of children are often conducted in schools. mentation of the plan and to develop barriers, including: a specific disability policy. It is • Financial barriers, e.g. paying for important to designate a budget CBM travel or services, since children line for disability inclusion to cover with disabilities are more likely to the costs. The plan and policy may come from poor households. 1 evolve over time, so the programme • Physical barriers that limit must be reviewed regularly to access to buildings or transport make sure it is constantly being • Attitudinal barriers, e.g. when strengthened. children with disabilities are seen VISION 2020: The Right to Sight as less worthy of attention by their aims for all services to be equitable, own families or health workers. and so must include children • Communication, e.g. for with disabilities. Furthermore, if children who are deaf or hard of children with disabilities do not hearing or who have intellectual have equal access to eye health impairments/learning difficulties. then this violates their right to health care, and may also deprive Eye health services therefore need Amina is profoundly deaf and then found her eyesight them of life-long opportunities. It is to be strengthened to ensure that was deteriorating; this made communication difficult the responsibility of all eye health children with disabilities have equal as she had relied on her sight for lip reading. Following workers to make sure that children access, and this must cover all the an eye examination, Amina had surgery for congenital with disabilities are fully included in different activities (e.g. screening, cataracts and received spectacles. She is also their services. outreach, outpatient, counselling, receiving rehabilitation to assist her with both her References medical and surgical treatment, and deafness and remaining vision impairment. These 1 World Health Organisation (2011) World Report referral to other services). intervention activities will greatly improve Amina's on Disability. Geneva: World Health Organization. The first step in ensuring that ongoing opportunities in social inclusion, education 2 CBM. Inclusion made easy in Eye Health Programmes. http://www.cbm.org/article/ children with disabilities have and the chance of decent work as an adult. downloads/54741/Inclusion_in_Eye_ equal access to eye health is to Health_Guide.pdf © The author/s and Community Eye Health Journal 2016. This is an Open Access COMMUNITY EYE HEALTH JOURNAL | VOLUME 29 ISSUE 93 | 2016 9 article distributed under the Creative Commons Attribution Non-Commercial License.
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