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

Lead Research Organisation: University of Ulster
Department Name: Sch of Psychology

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.

Planned Impact

Who will benefit from this research?
The project team are committed to engaging with key stakeholders in the areas of community public health (primary care & acute healthcare, health improvement/promotion), and national policy with the primary aim of reducing health inequalities for the LD population. While the LD population and the projects 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 for the LD population. It is now a legal duty within the UK under the Disability Discrimination Acts (1995, 2005) and the Equality Act (2010) for primary and secondary services to make reasonable adjustments to ensure equality of access to healthcare (Disability Rights Commission, 2006). The proposed project therefore will also be of particular interest to a wide range of government departments, trusts and clinical disciplines (public health researchers, epidemiologists, policy makers, service providers, acute & primary healthcare, health promotion & improvement teams, learning disability services, statutory and voluntary sectors, etc.). Project members are also committed to sharing project knowledge with all ADRC-NI partners on completion of the project.
How will they benefit?
Non-academic statutory and voluntary partners will ensure that the analytic process and findings will directly inform targeted public health, health promotion, primary healthcare, acute healthcare, clinical and national policy level interventions. Involvement and representation from both statutory and voluntary organisations, as well as service user group representation affords a valuable and unique opportunity to pursue and achieve proportionate universalism for the LD population of NI. The following proposed outputs have been planned to maximise and ensure impact. A project website and social media account will be created. These will provide a public and accessible 'audit trail' of how administrative data can be accessed and used to facilitate change in policy and practice. Specific consideration will be given to non-academic bodies and service users in the design of the website. A targeted intervention strategy for delivering focussed, context sensitive social health promotion and healthcare across NI will be formulated by the project team identifying the reasonable adjustments that can be made to community, primary, secondary and tertiary healthcare services including health promotion/screening. Using the project findings the team will target services to 'high-risk' areas across NI. A summary report and pathways to policy document will be compiled and sent to the ADRC-NI, the Office of First Minister and Deputy First Minister in NI, Regional Group on the Health & Wellbeing on Learning Disabilities and the Bamford Group on Learning Disabilities. On completion of the analyses the team will organise a knowledge exchange conference to ensure that project findings are effectively communicated to all stakeholders highlighting the reasonable adjustments that can be made to community, primary, secondary and tertiary healthcare services. The conference will be promoted and advertised through all stakeholders. One of the primary roles of all stakeholders is to support policy development which has wider connections with the voluntary sector, the Assembly, government departments, practitioners and academics. Importantly, this event will bring statutory and voluntary service providers together to discuss the pursuit/achievement of proportionate universalism for the LD population while clearly addressing the many inequalities that this population so frequently face. Finally a series of peer-reviewed publications will be produced and an ADRC-NI workshop will be organised to discuss data access, linkage, analysis and impact.
 
Description Background

Proposals for the 2021 Northern Ireland (NI) Census indicated that NI citizens will, for the first time, be able to explicitly report that they (or members of their household) live with a learning disability. Given that, at present, there is no central register detailing the actual number of individuals with a learning disability in NI, this future Census data, supplemented by a variety of other Census metrics and data from an array of other NI administrative data sources (that contain important information on e.g. housing, family, employment, education, health, income, services and supports), will have the potential to transform our understanding of learning disability at a population level and, more importantly, our ability to more effectively respond to the needs of those living with learning disability. In anticipation of, and in preparation for this new and improved national data on learning disability, the current study, which commenced during the proposal/planning stage of the 2021 Census and under the auspices of the UK's Administration Data Research Partnership, aimed to access and analyze existing administrative data relating to learning disability in NI, from 2007 and 2011, in order to highlight the availability, utility and import of learning disability data in NI, and to promote and stimulate future use of this administrative data in the region.

The findings of the study reveal much about the current state of play in NI regarding administrative data and learning disability. While there is much to be positive and optimistic about, there are also notable challenges and obstacles that will need to be overcome if we are to truly realize the potential of our existing and future administrative data. Among other things the study findings have revealed (i) the value and potential of Census data, alone, in identifying and locating individuals with learning disability in NI, and describing much about the socio-economic, health, education and demographic characteristics of the learning disability population, (ii) the limitations of poorly defined/designed Census survey questions and the importance of survey item specificity for accurately recording learning disability prevalence, (iii) the immense value of disability-focused household survey data obtained using probability-based sampling methods and its potential to contextualize and amplify the findings from Census data, (iv) the presence of, but, inaccessibility to, a variety of important Northern Ireland administrative data resources that have the potential to transform our understanding of important learning disability issues relating to e.g. health, service use, medication use, education and employment, and finally (v) the importance of administrative data awareness and timely use of data by all. It is hoped that the findings will aid researchers, policy makers, service commissioners and practitioners in all sectors in the years to come.

Methodology

Three primary sources of data were accessed and analyzed for the current study: (1) data from the 2011 Census, (2) data from the NI General Registrar Office, and (3) data from the 2007 NI Survey of Activity Limitation and Disability (NISALD). The study also used NI Settlement Band data and linked data from the NI Multiple Deprivation Measure. Access to the data from the first two sources was provided by the Administrative Data Research Centre - NI (ADRC-NI; now the Administrative Data Research NI - ADR NI), part of a recent UK-wide initiative funded by the Economic and Social Research Council (ESRC) to increase use of administrative data sources and linkages for research purposes. The data from these sources was linked by the Northern Ireland Statistics and Research Agency (NISRA) Research Support Unit (RSU) team, tested for potential disclosure problems, de-identified and, made available to the research team in a secure setting at NISRA headquarters in Belfast. The NISALD data (private households only), collected by NISRA in 2006-2007, was sourced from the UK data archive (UK Data Archive Study Number 7236). Ethical approval for this study was obtained from the Ulster University Research Ethics Committee, and the Administrative Data Research Network.

Key findings

Prevalence

National learning disability prevalence based on 2011 Census crude learning disability indicator
• The prevalence of learning disability within the overall Census population = 2.2%
• The prevalence of learning disability among those aged 15 years or younger = 3.8%
• The prevalence of learning disability among those aged 16 years or over = 1.7%

Prevalence within communal establishments
• The prevalence of learning disability among those aged 15 years or younger = ~13.1%
• The prevalence of learning disability among those aged 16 years or over = ~13.9%.

Prevalence within private households
• The prevalence of learning disability among those aged 15 years or younger = 3.8%.
• The prevalence of learning disability among those aged 16 years or over = 1.5%.

Prevalence by Health & Social Care Trust
• Overall prevalence of learning disability ranged from 1.9% (Northern HSCT) to 2.5% (Belfast HSCT)
• Prevalence among those aged 15 years or younger ranged from 3.2% (Southern HSCT) to 4.8% (Belfast HSCT)
• Prevalence among those aged 16 years or over ranged from 1.5% (Northern HSCT) to 2% (Belfast & Western HSCTs)

National learning disability prevalence based on the more explicitly defined measure of intellectual disability contained within the 2007 Northern Ireland Survey of Activity Limitations and Disability (NISALD)
• The prevalence of learning disability within the overall NISALD sample = 0.5%
• The prevalence of learning disability among those aged 15 years or younger = 1.3%
• The prevalence of learning disability among those aged 16 years or over = 0.3%

Socio-economic and demographic characteristics of NI's learning disability population

• According to the Census data, over 60% of those reporting a learning disability were male.
• In relation to age, learning disability was more common among those aged 15 years or younger. While 29% of those who had a learning disability in addition to at least one other health condition were under 16 years of age, 50% of those who reported learning disability as their only health condition were under 16 years of age.
• From the Census data, learning disability status was associated with greater deprivation. Among those reporting a learning disability as their only health condition, 12.7% were in the first decile (i.e. most deprived) while 7.6% were in the 10th decile (least deprived). Among those reporting learning disability with at least one other health condition, 15.1% were in the first multiple deprivation index decile while 5.9% were in the 10th. Over 39% of those living with a learning disability within the Belfast HSCT area were in the first multiple deprivation index decile.
• The majority of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions, were neither living as part of a couple nor living alone
• Regarding activity limitation, the majority (52%) of those with a learning disability as a single condition indicated that their day-to-day activities were not limited, while a minority (19%) indicated that their day-to-day activities were limited a lot. Conversely, 68% of those living with a learning disability comorbidly with at least one other health condition indicated that their day-to-day activities were limited a lot while only 12% indicated that their day-to-day activities were not limited.
• Within the overall Census sample, 1.3%-1.4% respectively of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions, identified as non-white (=1.1% prevalence of learning disability among non-white ethnic population in NI).
• Over 35% of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions resided within the Belfast Metropolitan Urban Area while over 23% of those with a learning disability, either as a single health condition, or, comorbidly with other health conditions resided in a small village, hamlet or the open countryside.

General health and comorbidity status of NI's learning disability population

Learning disability as a single health condition
• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 3.5 times more likely to be non-white.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 2.5 times more likely to live in areas of most extreme deprivation (i.e. the first and second multiple deprivation index deciles).
• Those whose day to day activities were 'limited a little' were over 4.5 times more likely to have bad or very bad health, while those whose day to day activities were 'limited a lot' were over 22.5 times more likely to have bad or very bad health compared to those reporting good or very good general health.

Learning disability with at least one other health condition
• Compared to those reporting good or very good general health, those who had bad or very bad general health were more likely to be female.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were over 5.5 times more likely to reside in a private household.
• Compared to those living a small village, hamlet or open countryside, those living in the Belfast metropolitan urban area, a medium sized town, a small town, or a village, were more likely to have bad or very bad health.
• Compared to those reporting good or very good general health, those who had bad or very bad general health were significantly more likely to live in more deprived areas (i.e. within the first seven multiple deprivation index deciles).
• Those individuals whose day to day activities were 'limited a little' were over 2 times more likely to have bad or very bad health, while those whose day to day activities were 'limited a lot' were over 18 times more likely to have bad or very bad health compared to those reporting good or very good general health

Health condition comorbidity under 16 years

• Among those with a learning disability in this age group, the most commonly co-occurring health conditions were communications difficulties (66.4%), mobility issues (33.4%), 'other' health conditions (26.2%) and respiratory problems (23.7%).
• Compared to those under aged 16 years who had multiple health conditions not including learning disability, a higher proportion of those under aged 16 years who had multiple health conditions including learning disability experienced memory loss (1.6% v 4.5% respectively), communications difficulties (17.1% v 66.4% respectively), and mental health problems (5.3% v 15.6% respectively).

Health condition comorbidity over 15 years

• Among those with a learning disability in this age range, the most commonly co-occurring health conditions were communications difficulties (53.2%), mobility issues (52.1%), mental health problems (45.7%), memory loss (25.2%) and respiratory problems (24%).
• Compared to those over aged 15 years who had multiple health conditions not including learning disability, a higher proportion of those over aged 15 years who had multiple health conditions including learning disability experienced memory loss (12.4% v 25.2% respectively), communications difficulties (5.5% v 53.2% respectively), mental health problems (25.7 v 45.7 respectively) and blindness or visual impairment (9.6% v 10.9% respectively).

Mortality and cause of death among NI learning disability population

• Overall, 4.8% of individuals who identified the presence of a learning disability during the 2011 Census died between March 2011 and December 2015. Among those without a learning disability at the 2011 Census, 3.7% died during this period.
• Among those who died and where learning disability was recorded as their only health condition at the 2011 Census, circulatory system complications were the most common cause of death (22%), followed by respiratory system complications (16.5%), then neoplasms (13.2%).
• Among those who died and where learning disability was recorded as one of a number of health conditions at the 2011 Census, circulatory system complications were the most common cause of death (19.2%), followed by nervous system complications (16.1%), then respiratory system complications (14%).
• Compared to those in the NI population who did not identify the presence of a health condition at the 2011 Census, those individuals who indicated that learning disability was one of a number of underlying health conditions had the highest risk of death between March 2011 and December 2015. These individuals were almost six times more likely to die (OR=5.87, 95%CI=5.82-5.92) compared to the large majority of the NI population who were free from health conditions at the last Census. In comparison, those who had multiple health conditions excluding learning disability at the 2011 Census were approximately three times more likely to die during this period (OR=3.38, 95%CI=3.36-3.40).

Employment among NI learning disability population

• In the overall population and among those aged 16 years or over, 18.8% of individuals who reported the presence of a learning disability at the 2011 Census also indicated that they were in paid employment. Among the remainder of the NI working-age population, regardless of health condition status, 55% indicated that they were in paid employment.
• The top five areas of employment among those who reported the presence of a learning disability at the 2011 Census were 1. Sales and retail assistants (10.9%), 2. Employment in areas including farming, gardening, carpentry, labouring, goods handling and storage, and shelf filling (8.2%), 3. Associate professional and technical occupations (6.6%), 4. Kitchen and catering assistants (4.3%), 5. Domestic cleaning (3.8%).
• Mode of employment was notably influenced by both sex and settlement band. For example, of the most common modes of employment, a higher proportion of females were employed as care assistants and home carers, waiting staff, or kitchen catering assistants. A higher representation of males was evident within all remaining modes of employment. In relation to farming, gardening, carpentry, labouring, shelf-filling, or goods handling and storage, 92.7% of jobs were held by male respondents. In relation to settlement band (i.e. city, town, rural), 70.3% of individuals with a learning disability who worked in farming or gardening, and 55.6% of those who worked as a labourer resided in a rural area. Over 50% of those who worked as a waiter/waitress, handling goods, office administration, or associate professional/technical occupations resided in a city.
Exploitation Route We hope that these findings will (i) highlight the availability, utility and import of learning disability data in NI, (ii) promote and stimulate future use of this data in the region, (iii) incentivize those in power to facilitate NI data custodians to share/link available learning disability relevant data where possible and (iv) lay some useful foundations for the more advanced and sophisticated learning disability statistical modelling that will be possible in the years to come and the policy changes that will emerge as a consequence.

It is hoped that our engagement with the Northern Ireland Statistics and Research Agency and The NI Census Team proves useful both to those responsible for the correct enumeration of the NI learning disability population at the next Census (and for future Censuses) and those who might continue this research once the new Census data (and other administrative data sources) becomes available. Early signs are positive, in that the NI Census Team have already begun to engage with project partners to ensure that the learning disability population will be adequately supported at the next Census.
Sectors Communities and Social Services/Policy,Healthcare
 
Description Preliminary findings (from LD-mortality survival analyses and general health condition latent class analyses) have been shared with statutory bodies (representatives from HSCTs, HSCB), voluntary organisations (director of ARC NI, Director of Positive Futures) and advocacy network partners (Director of COMPASS). Input and advice from these individuals/organisations has been instrumental in helping to refine early analyses, LD coding and to direct future analyses. Future (scheduled) engagemnent with these individuals/organisations will ensure that completed project findings can be translated into policy/practice relevant outputs. Given (i) the specificity complications of the extant 2011 Census learning disability survey item, (ii) the data access and linkage restrictions imposed by the Digital Economy Act, that currently prohibit important health and service use related analyses in NI, and (iii) the new and improved learning disability survey content that is to be included in the next NI Census; it became clear that the value of the current project lay not necessarily in what the consortium could learn about learning disability from extant administrative data in NI, but instead, what it could learn about administrative data utility and potential in time for the next NI Census (2021). The consortium therefore attempted not only to demonstrate some of the linkages and analyses that are possible with administrative data relating to learning disability, but to highlight a range of issues faced by the consortium over the lifetime of the project that will hopefully help to improve and promote use of administrative data in the future (i.e. aim #2). Four queries relating to the inclusion, framing and collection of learning disability data in the NI Censuses (past and future) arose over the course of the project. In an attempt to seek clarification on each, and to highlight important issues relating to future Census data collection, the consortium initiated correspondence with the Northern Ireland Census team. Specifically, the consortium was interested to know more about (1) the origins and 'evolution' of the disability content in the Northern Ireland Censuses, (2) why learning disability is being framed/assessed in the forthcoming 2021 Census in the way that it is, (3) how the Census Team intend to ensure the correct and complete enumeration of individuals with learning disability living in particular residences and communal establishments on Census day and (4) how the Census Team aim to support individuals with learning disability to manage the changes in mode of administration of the 2021 Census. The responses to these queries and a number of follow-up queries are detailed in our Final Report. It is hoped that this exchange proves useful both to those responsible for the correct enumeration of the NI learning disability population at the next Census (and for future Censuses) and those who might continue this research once the new Census data (and other administrative data sources) becomes available. Early signs are positive, in that the NI Census Team have already begun to engage with project partners to ensure that the learning disability population will be adequately supported at the next Census
First Year Of Impact 2021
Impact Types Societal,Policy & public services
 
Description A Population Accountability Approach to Special Educational Needs (SEN) in Northern Ireland
Amount £161,511 (GBP)
Funding ID ES/S00601X/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 05/2019 
End 10/2020
 
Title Census and General Register Office (GRO) data aggregation tools 
Description Census data relating to 10 health conditions, including Learning Disability (LD), for ~1.7m individuals were linked to the General Register Office's mortality register (2011-15). SPSS macros were developed to quickly, efficiently, and reliably recode and link the raw data from Cenus 2011 to the GRO data. Cases were categorised by health status: no health conditions; LD only; LD comorbid; a single condition excluding LD; multiple conditions excluding LD. Cause of death (ICD codes), and mortality rates/100,000 person years of follow-up, by health status were then estimated using these recoded LD-status categories. 
Type Of Material Improvements to research infrastructure 
Year Produced 2018 
Provided To Others? No  
Impact Improves efficiency and standardizes future coding of data (relating to LD analyses) from the ADRC-NI 
 
Title Combined Census 2011 and General Register Office (GRO) Databse (via The Northern Ireland Mortality Study (NIMS)) 
Description The Northern Ireland Mortality Study (NIMS) is a large-scale data linkage study that links the 1991, 2001 and 2011 Census returns for the whole of the enumerated population (approximately 1.6 million individuals) to subsequently registered mortality data from the General Register Office (GRO). The NIMS dataset is recommended to researchers whose primary interest is in mortality in Northern Ireland. 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact The NIMS dataset facilitated the execution of the (i) Learning Disability (LD) - mortality survival analyses and (ii) the LD latent class analyses (see models #1 and #2). 
 
Title Mortality of people with a self-reported learning difficulty in Northern Ireland 
Description Census data relating to 10 health conditions, including LD, for ~1.7m individuals were linked to the General Register Office's mortality register (2011-15). Individuals were categorised by health status: no health conditions; LD only; LD comorbid; a single condition excluding LD; multiple conditions excluding LD. Cause of death (ICD codes), and mortality rates/100,000 person years of follow-up, by health status were estimated using survival analysis. 
Type Of Material Data analysis technique 
Year Produced 2018 
Provided To Others? Yes  
Impact Model and associated findings will inform: (i) Project summary report and pathways to policy document (ii) Peer-reviewed open access publications (iii) Conference dissemination 
 
Title Profiling health conditions for LD population in NI 
Description Latent class analyses of Census Health Conditions for individuals endorsing the Census 2011 learning disability item - stratified by residence (household/communal establishment) AND >16 years of age; No education; Limited day-to-day activity; Long-term disability status. 
Type Of Material Data analysis technique 
Year Produced 2018 
Provided To Others? Yes  
Impact Model and associated findings will inform: (i) Project summary report and pathways to policy document (ii) Peer-reviewed open access publications (iii) Conference dissemination 
 
Title Use of linked data to develop the most comprehensive population-based estimates of the prevalence of LD (as currently recorded in available NI administrative data). 
Description This project aims to use data-linkage techniques to develop the most comprehensive population-based estimates of the prevalence of Learning Disability (LD) (as currently recorded in available NI administrative data), and the variation of these estimates within and between small geographical areas in NI in order to facilitate/achieve proportionate universalism. During the lifetime of the project the following objectives will be achieved: 1. Provide estimates of LD prevalence at a regional level and also for smaller geographical units. The variability of prevalence across geographical units will be estimated (with and without adjustment for population density and deprivation). 2. The development of a regional map detailing the social, economic, health and educational landscape of LD in NI. 3. The execution of a series of fixed and random effects regression models using personal, social, health, educational and economic variables as predictors of LD based on the NI 2011 census. 4. LD data linkage and analysis with data from the NI Multiple Deprivation Measure; the Enhanced Prescribing Database; the Dental Payment System; the Ophthalmic Claim System; & the NI Death Register. 5. The formulation of a proportionate universalism strategy for delivering focussed, context sensitive intervention for LD across NI and for securing unlinked LD clinical data 
Type Of Material Database/Collection of data 
Year Produced 2018 
Provided To Others? Yes  
Impact This will be the first data linkage of its kind in NI and a primary focus of the project is to stimulate awareness and use of a greatly underutilised data resource by ensuring that all members of the ADRC-NI have an opportunity to learn from the project. Project members are committed to sharing project knowledge with all ADRC-NI partners on completion of the project. Specifically, the team will organise a training workshop in Belfast to discuss data access, data handling, data analysis and data impact. It is believed that the linkage design of the proposed study will be greatly beneficial for future exploitation of these data resources by other ADRC-NI members. A key legacy objective of the project is to attempt to facilitate further data sharing in NI. Valuable hospital admissions and health care data that can meaningfully inform stakeholders about the health inequalities experienced by the LD population exists in NI but is currently not accessible (not linked) through the regional ADRC. This data has notable potential not only for advancing the welfare and support of the LD community of NI but for advancing the current project aims. The findings from the current proposed project will greatly incentivise NI data custodians to share this data. 
 
Description Health and Social Care Board - Programme Manager for Mental Health and Learning Disability - Valerie McConnell 
Organisation Health & Social Care Board, N Ireland
Country United Kingdom 
Sector Public 
PI Contribution Dissemination of project research findings to HSCB representatives Lorna Conn (LC) and Programme Manager for Mental Health and Learning Disability, Valerie McConnell (VMcC).
Collaborator Contribution LC and VMcC assisted in the interpretation and translation of main Census 2011 research findings from a health and social care perspective. HSCB representatives also assisted in the framing and composition of the project consortium's research memos: distributed to (i) the Northern Ireland Census Team and (ii) the Northern Ireland Statistics and Research Association (NISRA).
Impact 2 memos (one for the NI Census team and one for NISRA) detailing and requesting information on the various Census related issues concerning the recording of learning disability discussed at the November '19 project meeting (regarding e.g. data origins, residency status, mode of administration, data accessibility (and obstacles/challenges) and supplementary survey recommendations)
Start Year 2019
 
Description Key research links sustained with members of Danish Institute for Social Research (SFI) in order to encourage the wider and more creative use of administrative data in the UK. 
Organisation Danish National Centre for Social Research (SFI)
Country Denmark 
Sector Public 
PI Contribution To ensure best practice throughout, the research team from UU will visit with members of the Danish Institute for Social Research (SFI). The SFI are world leaders in using linked registry (administrative) data to address research topics in the social sciences: the SFI's mission is to "...generate new knowledge of relevance to society". Prof Murphy and Prof Shevlin are affiliate members of the SFI and are currently working on a registry-based birth cohort study examining the long term physical, psychological and educational outcomes associated with early life adversity in conjunction with Dr Mogens Christoffersen. The project includes two visits by the research team to SFI headquarters in Copenhagen. The first visit will involve consultation with Christoffersen and his team of researchers on project plans. This will allow the team to draw on the SFI expertise and experience in designing administrative data projects, methods of linkage, identifying potential problems, and methods of analysing unit-level and clustered data. In particular the team will seek advice on how administrative data variables can be used as proxies for important social and psychological variables. The second visit will involve a review of the analyses and discussion on aspects of interpretation and best methods for the presentation of the results. In particular we will draw on the SFI's expertise in maximising the social impact of the research and discuss their successful dissemination and implementation strategies.
Collaborator Contribution Dr Mogens Christoffersen has indicated that he will be available throughout the project to provide advice on technical and analytical issues. This relationship will also benefit Dr Hanna-Trainor, as an early career researcher, to develop her skills in administrative data research and to broaden her academic network. As leaders in the interrogation of public data, SFI team are ideally placed to (i) advise on linkage and analysis for the current study and (ii) extend the project further accommodating international comparative analyses.
Impact Jamie to add relevant papers
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Association for Real Change
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Compass Advocacy Network
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Health & Social Care Board, N Ireland
Country United Kingdom 
Sector Public 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Positive Futures, N Ireland
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Public Health Agency (PHA)
Country United Kingdom 
Sector Public 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation Public Health England
Country United Kingdom 
Sector Public 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description The development of a multi-disciplinary team to collaborate on the research project; these partners will be the primary beneficiaries of the research and will be able to move forward after the research is finished and influence policy and service provision in Northern Ireland 
Organisation University of Bristol
Department Norah Fry Research Centre
Country United Kingdom 
Sector Academic/University 
PI Contribution To begin to pursue and achieve proportionate universalism for the LD populaiton of NI, a multi-disciplinary team comprising of 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 voluntary sector (ARC, Positive Futures) and a LD service user group (COMPASS) met with the aim to exploit, link and maximise the use of existing NI administrative data. The research team at UU, guided by the expertise of the partners plan 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. The research team will meet with partners throughout the project to introduce them to the administrative data being utilised and seek their input and guidance on the usefulness of the data being analysed. The research team will also meet with the partners post analysis of the data to gather their feedback in terms of disseminating the findings and moving forward with the data.
Collaborator Contribution The partners consist of an eclectic mix of academic, statutory and voluntary organisations with remits across learning disabilities, service delivery and support, health (healthcare) and health promotion. The wide range of expertise will be invaluable in ensuring that the administrative data available on the population with LD in NI is utilised to its full potential. While the LD population and the project's nonacademic partners, the statutory (PHA and HSCT) and voluntary (ARC, Positive Futures, COMPASS) sectors, will be the primary beneficiaries of the research, they along with the research team will also strongly influence how policy is commissioned, and how health care and health promotion services are delivered.
Impact In progress
Start Year 2017
 
Description Health and Social Care Board Meeting November 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact Dissemination of research findings to HSCB Programme Manager for Mental Health and Learning Disability - Valerie McConnell (and Lorna Conn)

Plan to write 2 memos for circulation to external agencies. The first, was sent to the Census team, and sought clarification on key issues that project partners raised relating to Census 2021 (e.g. piloting of new intellectual disability indicator; procedures regarding the collection of data from non-private households; difficulties relating to online mode of administration for individuals with learning disabilities; etc.). The second, sent to NISRA, campaigned for (i) a new Northern Ireland Survey of Activity Limitations and Disability probability household survey with adequate coverage of (or complete focus on) individuals with learning disability; and (ii) that on-going efforts to over-come difficulties in linking Census with health and other administrative data resources is resolved in advance of the 2021 Census.
Year(s) Of Engagement Activity 2019
 
Description Maintaining key relationships with SFI research team in Denmark 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact To ensure that the available data is utilised fully and appropriately the early career researcher and some of the research team from UU visited SFI in Denmark, world leaders in the analysis of de-identified government administrative data. Project members Prof Jamie Murphy & Prof Mark Shelvin are affiliate members of SFI and have
already begun intensive analysis of Danish Registry data. Leaders in the interrogation of public data, SFI are ideally placed to (i) advise on linkage and analysis for the current study and (ii) extend the project further accommodating international comparative analyses. The meeting also served to broaden the research network for the early career researcher.
Year(s) Of Engagement Activity 2017
 
Description NI Census (Outreach) Team Meeting 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact The Northern Ireland Census Team contacted project partners to ensure that the learning disability population will be adequately supported at the next 2021 Census
Year(s) Of Engagement Activity 2021
 
Description Presentation at International Conference for Administrative Data, Belfast, June 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Two members of the research team Prof Jamie Murphy and Dr Orla McBride presented findings from the initial analysis of the 2011 Northern Census data and General Register Office (GRO) Mortality statistics for Northern Ireland. The initial findings reported on the limitations of the data (in terms of its quality utility) and the demography variation in learning difficulty endorsement as well as mortality and morbidity risk amongst the LD population in NI.
Year(s) Of Engagement Activity 2018
URL https://adr2018.wordpress.com
 
Description Project Partners Meeting September 2019 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact Project partners meeting - Tuesday 24th September - Dissemination of Project Findings (Focus on Census '11 and NISALD data analyses).

Action points from meeting:
1. Secure permission to link NI multiple deprivation data to the 2011 Census data to establish deprivation status of LD populations across NI
2. Produce academic paper describing analytic findings - Submit to International Journal of Population Data Science
3. Sponsor and contribute to Association for Real Change's 21st Anniversary Conference scheduled for June 2020
Year(s) Of Engagement Activity 2019
 
Description Research Team Project Initiation Meeting, Dunsilly Hotel, Antrim, February 2018 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Third sector organisations
Results and Impact The project initiation meeting involved academics (research team from Ulster University), statutory bodies (representatives from HSCTs, HSCB), voluntary organisations (director of ARC NI, Director of Positive Futures) and advocacy network partners (Director of COMPASS). The purpose of the meeting was to introduce the partners to the research project and the potential benefits of working with administrative datasets available on LD population in Northern Ireland. A key legacy objective of the project is to attempt to facilitate further data sharing in NI. Administrative data has notable potential not only for advancing the welfare and support of the LD community of NI but for advancing the current project aims. The findings from the current project will greatly incentivise NI data custodians to share this data further.
Year(s) Of Engagement Activity 2018