Learning disability and Northern Ireland: Achieving proportionate universalism through administrative data research

卫生、社会服务和公共安全部最近发布的一项名为“健康和良好改变生活（2012-2022）”的公共卫生战略表明，有学习障碍的人是北方爱尔兰（NI）最脆弱和最弱势的群体之一。事实上，有证据表明，在英国（UK），那些患有LD的人更有可能经历重大疾病，更早地发展它们，并且比整体人口更早地死于它们[2]。此外，即使健康状况如此令人担忧，LD人群也不太可能获得他们所需的一些基于证据的年度健康检查和治疗，并继续面临获得服务的真实的障碍[1] [3]。然而，最令人担忧的是LD的明显隐形。有证据表明，这种不平等现象在这一人群中经常存在并持续存在，因为他们仍然看不见[4]。目前，北爱尔兰并没有详细记录有严重残疾者实际人数的中央登记册。因此，无法评估这一群体可能经历的不平等的形式、背景或程度。这反过来又使得不可能针对这一人群提供有针对性的服务或监测健康方面的不平等。最近，一份提交给北方爱尔兰议会的“研究和信息服务文件”[9]指出，“.根据Marmot在2010年的一项审查[10]，健康不平等是可以避免的，也是社会不公正的。[和].为了降低健康的社会梯度的陡峭度。行动必须是普遍性的，但其规模和力度应与弱势程度相称。因此，政策和战略应针对那些在社会和经济上处于更不利地位的人采取行动。这种方法被称为“比例普及主义”[11]，它需要跨地方和中央政府，以及志愿和私营部门的多机构合作”[12]。为了开始追求并实现NI LD人口的比例普及主义，一个由阿尔斯特大学（UU）学术研究人员组成的多学科团队，布里斯托大学（UofB）和公共卫生署（PHA）、健康和社会护理信托基金（HSCT）和法定部门的高级代表（ARC，Positive Futures）和LD服务用户组（COMPASS）旨在利用、链接和最大限度地利用现有NI管理数据，以（i）开始暴露，利用和探索现有北方爱尔兰（NI）行政数据集中的LD记录（ii）开始考虑NI未来LD记录和识别的最佳实践和战略（iii）制定指导方针，有针对性地为北爱尔兰的LD患者提供支持，以及（iv）建立一个行政数据证据库，以建立未来的研究，促进未来的数据共享，并采取持续行动，减少北爱尔兰LD人群面临的健康不平等。具体而言，该研究旨在（i）使用现有的人口普查数据提供北爱尔兰LD的地理分布图;（ii）使用一系列社会经济指标描述LD人口的人口统计学特征;（iii）使用增强处方数据库和人口普查健康指标数据描述LD人口中医疗保健问题的发病率和合并症;（iv）利用北爱尔兰死亡率数据，探索北爱尔兰贫困社区死亡的原因和背景，（v）通过地方和中央政府、志愿和私营部门的多机构合作，促进和促进整个地区的“比例普遍性”。虽然LD人口和该项目的非学术合作伙伴，法定（PHA和NHSCT）和自愿（ARC，Positive Futures，COMPASS）部门将是研究的主要受益者，但该团队也将强烈影响政策的委托方式，以及如何提供医疗保健和健康促进服务。

A recent public health strategy published by the Department of Health, Social Services & Public Safety entitled 'Fit and Well - Changing Lives (2012-2022)' [1] has shown that people with a learning disability (LD) represent one of the most vulnerable and disadvantaged groups in Northern Ireland (NI). In fact evidence shows that those with a LD across the United Kingdom (UK) are more likely to experience major illnesses, to develop them earlier, and die of them sooner than the population as a whole [2]. Furthermore, even with such a worrying health profile, the LD population is less likely to get some of the evidence-based annual health checks and treatments they need, and continue to face real barriers in accessing services [1] [3]. Most alarming however is the apparent invisibility of LD. Evidence suggests that such inequity often exists and persists among this population because they remain unseen [4]. At present there is no central register detailing the actual number of individuals with LD in NI. As a consequence it is not possible to evaluate the form, context or degree of inequality that may be experienced by this group. This in turn makes it impossible to tailor or to target services or to monitor health in terms of health inequalities for this population. Recently, a 'Research and Information Service Paper' submitted to the Northern Irish Assembly [9] noted that "...according to a review by Marmot in 2010 [10], health inequalities are avoidable and socially unjust...[and]...in order to reduce the steepness of the social gradient in health...actions must be universal, but with a scale and intensity proportionate to the level of disadvantage. Therefore, policies and strategies should target action at those experiencing greater social and economic disadvantage. This approach is termed 'proportionate universalism' [11] and it requires multi-agency working across local and central government, and the voluntary and private sectors" [12].To begin to pursue and achieve proportionate universalism for the LD population of NI, a multi-disciplinary team comprising academic researchers from Ulster University (UU), University of Bristol (UofB) and senior representatives from the Public Health Agency (PHA), the Health and Social Care Trusts (HSCTs) the statutory sector (ARC, Positive Futures) and a LD service user group (COMPASS) aim to exploit, link and maximise the use of existing NI administrative data to (i) begin to expose, exploit and explore LD records wherever they reside in existing Northern Irish (NI) administrative datasets (ii) begin to consider best practice in, and strategize for, the future recording and identification of LD in NI (iii) formulate guidelines to tailor, target and implement support for individuals with LD across NI and (iv) establish an administrative data evidence base upon which to build future research, facilitate future data sharing and enable ongoing action to reduce the health inequalities faced by the LD population in NI. Specifically the study aims to (i) provide a geographical map of LD in NI using available Census data; (ii) profile the demography of the LD population using a range of socio-economic metrics; (iii) profile morbidity and comorbidity of health care problems among the LD population using the Enhanced Prescribing Database and Census health metric data; (iv) exploit NI Mortality data to explore the causes and contexts of death among the NI LD community and (v) stimulate and facilitate 'proportionate universalism' across the region through multi-agency collaboration across local and central government, and the voluntary and private sectors. While the LD population and the project's non-academic partners, the statutory (PHA and NHSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, the team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.