Title: Learning disability and Northern Ireland: Achieving proportionate universalism through administrative data research
Funder: Economic and Social Research Council

Abstract: 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.


Research activity codes: 2.4 SURVEILLANCE AND DISTRIBUTION;8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: MENTAL HEALTH