International comparisons of mortality data about people with intellectual disabilities

Lead Research Organisation: University of Bristol
Department Name: Sch for Policy Studies

Abstract

The Confidential Inquiry into premature deaths of people with intellectual disabilities in England (2010-2013) reviewed the deaths of all people with intellectual disabilities in five (former) Primary Care Trust areas in South West England. It reported that men with intellectual disabilities died 13 years sooner than men in the general population and women with intellectual disabilities died 20 years sooner than women in the general population. Almost a quarter (23%) of deaths of people with intellectual disabilities were under the age of 50, compared with just 9% in the general population (Heslop et al., 2013).

The study highlighted the absence of national information about the age, gender and cause of death (mortality data) relating to people with intellectual disabilities, and that at present in England it is not possible to disaggregate national mortality data to look at information only relating to people with intellectual disabilities. Without this information, it is difficult to assess the extent of health inequalities faced by this population nationally, to monitor a reduction in premature deaths, or to understand where targeted resources could be most effective.

Discussions with colleagues internationally have indicated that mortality data about people with intellectual disabilities is non-existent or patchy in many countries. As in England, identifying people with intellectual disabilities in national mortality data is rarely possible.

The proposed seminar series will be led by the academic and practitioner (GP) leads of the Confidential Inquiry in England. It will bring together academics, policy-makers and practitioners from a range of countries to discuss and share experiences of measuring and comparing premature mortality of people with intellectual disabilities. The overall aim of the seminars is to ultimately contribute to the identification and reduction of premature mortality in people with intellectual disabilities. Its objectives are to agree internationally comparable information to be collected about the deaths of people with intellectual disabilities and to discuss with, and support, academics, policy-makers and practitioners to gather, analyse and compare their data, sufficient to allow the development of policies and practical strategies to address common concerns identified by the data.

The proposed seminar series will consist of nine key seminar events, supplemented with a dedicated webpage, twitter account and blogs. A mixed model of seminars is proposed, that combines interactive web conferences, online workshops and two face-to-face meetings. Given the range of international collaborators involved, this would make best use of the available resources to geographically dispersed attendees. Where possible, the face-to-face meetings will 'piggy back' with significant national or international conferences that academic researchers and practitioners would be most likely to be attending, and will be held in Australia (Year 2) and the UK (Year 3). In addition to these face-to-face meetings, interactive web conferences and/or online workshops will be held each year using Webex or Adobe Connect (or similar) supplemented with a conference call line to provide enhanced interactive capacity.

The proposed seminar series has support from a range of international academics and practitioners (from 12 countries) who are working to enhance the collection and quality of mortality data about people with intellectual disabilities. The seminar series will strengthen links between UK and international researchers, support internationally comparative data about mortality of people with intellectual disabilities to be collected, and offer opportunities for collaborative papers about premature and avoidable deaths in this population and the development of potential strategies to address the issues.

Planned Impact

The proposal for the seminar series has been led by an academic researchers and a medical practitioner (GP) with an emphasis on making an impact with the work.
Our ultimate aim is to reduce premature mortality in people with intellectual disabilities, so we would expect this population and their families to be the main indirect beneficiaries of the seminar series.
Direct beneficiaries of the seminar series will be
1. Academic researchers measuring and comparing premature mortality of people with intellectual disabilities, and new researchers interested in this field of work
2. Policy-makers aiming to reduce health inequalities
3. Service managers and practitioners supporting people with intellectual disabilities
4. Charities and third sector organisations providing advocacy, information, advice or practical support for people with intellectual disabilities.

How will they benefit?
1. Academic researchers
It is vital that equivalent definitions and methods are used to collect internationally comparable data. This would include a clear definition of 'people with intellectual disabilities' and harmonious mortality data. Academic researchers will benefit from the seminar series by having a forum to discuss, share and explore cross-national issues in collecting and understanding internationally comparable mortality data. The seminar series would be particularly timely for academics from a range of European, North American and Australasian countries who are now starting to address gaps in mortality data both within and between countries. It would also provide an opportunity for junior researchers interested in this under-researched area to become engaged in exciting, collaborative work in the future.
2. Policy-makers aiming to reduce health inequalities
The seminar series will provide policy makers with an opportunity to debate their need for data with academic researchers to ensure that appropriate data is collected and translated into relevant information. Reducing differences in life expectancy, along with increased healthy life expectancy in the most vulnerable groups in society, are key objectives of the Public Health Outcomes Framework in England. Policy makers therefore require accurate intelligence to understand how health inequalities impact on the health of vulnerable groups, and what the particular national and local needs are in this regard.
3. Service managers and practitioners supporting people with intellectual disabilities
The Confidential Inquiry in England identified that many service managers and practitioners were unsurprised at the early deaths of people with intellectual disabilities. In general, they lacked knowledge about potential contributory factors to premature deaths and how they could effective ameliorate these. The seminar series could directly benefit service managers and practitioners by providing them with accurate information about premature and avoidable deaths of people with intellectual disabilities, and possible preventative measures that could be taken e.g the need for flu and pneumonia immunisations for people with intellectual disabilities at high risk of death from respiratory infection; or the need for appropriate fall prevention strategies to prevent deaths from accidents. In essence, service managers and practitioners would be helping to translate the mortality data into effective practice-related action to reduce premature deaths at the 'front line'.
4. Charities and third sector organisations
Charities and third sector organisations perform an important advocacy and campaigning role for many people with intellectual disabilities. They will benefit from the seminar series by engaging in discussions about ways to reduce health inequalities in people with intellectual disabilities, that they can then use in campaigning and advocacy interventions.

Publications

10 25 50
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Dieckmann F (2015) The Life Expectancy of People with Intellectual Disabilities in Germany. in Journal of applied research in intellectual disabilities : JARID

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Florio T (2015) Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia. in Journal of applied research in intellectual disabilities : JARID

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Heslop P (2015) Mortality in People with Intellectual Disabilities. in Journal of applied research in intellectual disabilities : JARID

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Heslop P (2015) Mortality of People with Intellectual Disabilities in England: A Comparison of Data from Existing Sources. in Journal of applied research in intellectual disabilities : JARID

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McCarron M (2015) Mortality Rates in the General Irish Population Compared to those with an Intellectual Disability from 2003 to 2012. in Journal of applied research in intellectual disabilities : JARID

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Ouellette-Kuntz H (2015) Understanding Information About Mortality Among People with Intellectual and Developmental Disabilities in Canada. in Journal of applied research in intellectual disabilities : JARID

 
Description Funding for the webinar series has enabled us to establish a strong network of academics, practitioners and policy-makers whose work is related to mortality of people with intellectual disabilities, and reducing premature deaths in this population. The network has a contact list of over 80 people from more than 15 different countries. The network will continue to act as a community of support beyond the funding from the ESRC. The network has undertaken a number of significant pieces of work: we have developed guidelines for reporting internationally comparable data about mortality of people with intellectual disabilities which are now starting to be adopted. We have also worked hard to understand international data about mortality of people with intellectual disabilities, and the differences between countries in the age and cause of death of this population.
Data from Leicestershire in England, Ireland and Massachusetts State in the USA suggest higher mortality rates for people with intellectual disabilities than more recent England figures. Finnish national figures and data from two Canadian provinces gave lower mortality rates than in England. A similar study of New South Wales gave substantially less complete identification of people with ID in those aged 70 or older so the lower standardised death rate produced is therefore probably not comparable. The latest comparable data that we have is presented below, drawn from Glover et al. 2017.

Comparison of directly standardised, all-causes mortality rate for people with ID with comparable figures from other national or sub-national studies. Rates are standardised to 2013 European standard population (from Glover et al. 2017).

Location Dates ID PYER Directly Standardised mortality rate (ID) Comments Reference
Leicestershire, England 1993-2005 23,077 34.42 (30.42 to 38.73) Register, incomplete age spectrum - under 20s not included Tyrer et al. 2007
Finland 1996-2007 378,987 16.81 (16.30 to 17.34) National social security linked to mortality Arvio et al. 2016
Manitoba, Canada 2000-2005 29,046 18.2 (Cis not calculable) Established mortality / social security / health data Ouellette-Kuntz et al. 2015
Republic of Ireland 2002-2012 271,416 33.7 (31.8 to 35.7) Register McCarron et al. 2015
SE Ontario, Canada 2004-2011 14,598 15.9 (13.4 to 18.7) Register Ouellette-Kuntz et al. 2015
New South Wales, Australia 2005-2011 270,649 10.6 (9.3 to 12) Social security linked to mortality. Less complete for age <5 or >70 Florio et al. 2015
England 2010-2014 59,280 22.6 (20.4 to 24.9) Primary care data linked to mortality Glover et al. 2017

This data has opened up new research questions in relation to deaths of people with intellectual disabilities, particularly related to understanding apparent variation between countries, identifying ICD-10 coding disparities for recording deaths of people with intellectual disabilities (e.g. some people reportedly dying from having intellectual disabilities which is clearly incorrect), and looking in more detail at within population differences between males and females. The network established by the ESCR award is committed to furthering work in these ways in the future.
Exploitation Route The group has worked collaboratively to draft out some guidelines about reporting mortality of people with intellectual disabilities. Some authors are now starting to use these guidelines - see the most recent papers by Glover et al. 2017 and Trollor et al (2017). The group has now set a Task and Finish exercise to complete an international consensus statement to be ratified by IASSIDD by summer 2018, and to run a masterclass about understanding mortality data as it relates to people with intellectual disabilities in summer 2018..
Sectors Communities and Social Services/Policy,Healthcare

URL http://www.bris.ac.uk/sps/seminars/international/resources.html
 
Description There is an important link needed between academic information about age and cause of death, and practice based initiatives to reduce premature death. As a group contributing to the seminar series, we have been exploring this issue, along with policy makers and practitioners. As an example, in the USA, information about potential excess mortality in relation to falls and aspiration pneumonia has led to targeted training and the development of guidelines for care workers about early warning signs and actions to be taken. Work undertaken in England has contributed to the development of policy-related guidance about mortality of people with learning disabilities (see national guidance for Learning from Deaths https://www.england.nhs.uk/ourwork/part-rel/nqb/). The inclusion of deaths of people with intellectual disabilities has been enhanced by being able to draw on examples from other countries and collaborators in our seminar series meetings. In addition, at regional level, we hosted a placement from Emily Lauer from the USA for a series of eight workshops held across England to discuss the impact of mortality reviews and how the findings from reviews of deaths could be used to improve services for people with intellectual disabilities. In 2020-2021, with the global pandemic, the international collaborative group worked together to share information about the diagnosis and impact of COVID-19 on people with intellectual disabilities. A fortnightly bulletin was shared to the group, and a wider cohort of academics, professionals and policy makers to share materials, data and reports and to ask advice of each other. The network was hugely valuable in enabling this to happen.
First Year Of Impact 2017
Sector Healthcare,Other
Impact Types Societal,Policy & public services

 
Description Briefed Peers for House of Lords debate
Geographic Reach National 
Policy Influence Type Gave evidence to a government review
URL https://hansard.parliament.uk/Lords/2016-10-17/debates/1D28FF14-2D08-4A21-BCDF-A01DBF7C6A18/Disabili...
 
Description Gave evidence to SAGE committee
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact Improvements in the protection of people with learning disabilities against COVID-19. Vaccination rates approaching those of the general population.
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation Catholic University of Applied Sciences of North Rhine-Westphalia
Country Germany 
Sector Academic/University 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation Karolinska University Hospital
Country Sweden 
Sector Hospitals 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation Queen's University Belfast
Country United Kingdom 
Sector Academic/University 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation Trinity College Dublin
Country Ireland 
Sector Academic/University 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation University of Massachusetts
Department University of Massachusetts Medical School
Country United States 
Sector Academic/University 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description 2014 IASSIDD Europe Regional Congress 
Organisation University of New South Wales
Country Australia 
Sector Academic/University 
PI Contribution Chaired two meetings of collaborators and interested people to discuss standardising data across international borders in relation to mortality of people with intellectual disabilities
Collaborator Contribution Engaged in discussions. We agreed core standardised data to be collected in all countries regarding mortality of people with intellectual disabilities
Impact A working paper stating the core data to be collected in relation to mortality of people with intellectual disabilities
Start Year 2014
 
Description Co-applicant for grant looking at mortality of people with ID in N.Ireland 
Organisation Ulster University
Country United Kingdom 
Sector Academic/University 
PI Contribution This project will use data-linkage techniques to develop the most comprehensive population-based estimates of the prevalence of learning disability (as recorded in the 2011 Census), and the variation of these estimates within and between small geographical areas in Northern Ireland. Furthermore, associations between personal, familial, social, and economic factors and learning disability will be examined. These aims will be met through the project's two linked phases and will be conducted through the ADRC-NI who will facilitate analyses of the entire NI population. I will be acting as a consultant to this project.
Collaborator Contribution The Lead Collaborators will be linking the 2011 Northern Ireland Census to key Health and Social Care Data Resources and the Northern Ireland Death Register in order to meet the key research aims and intentions. The project will also document the frequency of use of ICD-10 codes relating to learning disability severity (ICD-10 codes F70-79) as cause of death in Northern Ireland.
Impact This is a multidisciplinary collaboration, involving a range of academics in Northern Ireland and the Northern Ireland Statistics and Research Agency (NISRA).
Start Year 2017
 
Description Roundtable at IASSIDD World Congress 2016 
Organisation University of Perth
Country Australia 
Sector Academic/University 
PI Contribution We facilitated a round table group discussion about mortality of people with intellectual disabilities at the IASSIDD World Congress. We attracted 30+ people to the discussion group updating each other about current work in relation to mortality of people with intellectual disabilities. This resulted in some new partnerships, e.g. with a team of academics and practitioners from Western Australia.
Collaborator Contribution We have been in touch sharing information about our work.
Impact None yet
Start Year 2016
 
Description Special Edition of JARID journal about mortality of people with intellectual disabilities 
Organisation Catholic University of Applied Sciences of North Rhine-Westphalia
Country Germany 
Sector Academic/University 
PI Contribution Myself and Dr Matt Hoghton (co-applicants for the award) provided academic expertise by being the lead editors of a Special Edition of the Journal of Applied Research in Intellectual Disabilities (JARID) about mortality of people with intellectual disabilities.
Collaborator Contribution Colleagues from six countries in total came together as a result of the seminar series to write papers for a Special Edition of the Journal of Applied Research in Intellectual Disabilities. A colleague from the USA helped with the editing process. The Special Edition was published in August 2015.
Impact The Special Edition of JARID was published in August 2015. It contained papers presenting data about mortality of people with intellectual disabilities from six different countries.
Start Year 2014
 
Description Special Edition of JARID journal about mortality of people with intellectual disabilities 
Organisation Queen's University
Country Canada 
Sector Academic/University 
PI Contribution Myself and Dr Matt Hoghton (co-applicants for the award) provided academic expertise by being the lead editors of a Special Edition of the Journal of Applied Research in Intellectual Disabilities (JARID) about mortality of people with intellectual disabilities.
Collaborator Contribution Colleagues from six countries in total came together as a result of the seminar series to write papers for a Special Edition of the Journal of Applied Research in Intellectual Disabilities. A colleague from the USA helped with the editing process. The Special Edition was published in August 2015.
Impact The Special Edition of JARID was published in August 2015. It contained papers presenting data about mortality of people with intellectual disabilities from six different countries.
Start Year 2014
 
Description Special Edition of JARID journal about mortality of people with intellectual disabilities 
Organisation Trinity College Dublin
Country Ireland 
Sector Academic/University 
PI Contribution Myself and Dr Matt Hoghton (co-applicants for the award) provided academic expertise by being the lead editors of a Special Edition of the Journal of Applied Research in Intellectual Disabilities (JARID) about mortality of people with intellectual disabilities.
Collaborator Contribution Colleagues from six countries in total came together as a result of the seminar series to write papers for a Special Edition of the Journal of Applied Research in Intellectual Disabilities. A colleague from the USA helped with the editing process. The Special Edition was published in August 2015.
Impact The Special Edition of JARID was published in August 2015. It contained papers presenting data about mortality of people with intellectual disabilities from six different countries.
Start Year 2014
 
Description Special Edition of JARID journal about mortality of people with intellectual disabilities 
Organisation University of Massachusetts
Department University of Massachusetts Medical School
Country United States 
Sector Academic/University 
PI Contribution Myself and Dr Matt Hoghton (co-applicants for the award) provided academic expertise by being the lead editors of a Special Edition of the Journal of Applied Research in Intellectual Disabilities (JARID) about mortality of people with intellectual disabilities.
Collaborator Contribution Colleagues from six countries in total came together as a result of the seminar series to write papers for a Special Edition of the Journal of Applied Research in Intellectual Disabilities. A colleague from the USA helped with the editing process. The Special Edition was published in August 2015.
Impact The Special Edition of JARID was published in August 2015. It contained papers presenting data about mortality of people with intellectual disabilities from six different countries.
Start Year 2014
 
Description Special Edition of JARID journal about mortality of people with intellectual disabilities 
Organisation University of New South Wales
Country Australia 
Sector Academic/University 
PI Contribution Myself and Dr Matt Hoghton (co-applicants for the award) provided academic expertise by being the lead editors of a Special Edition of the Journal of Applied Research in Intellectual Disabilities (JARID) about mortality of people with intellectual disabilities.
Collaborator Contribution Colleagues from six countries in total came together as a result of the seminar series to write papers for a Special Edition of the Journal of Applied Research in Intellectual Disabilities. A colleague from the USA helped with the editing process. The Special Edition was published in August 2015.
Impact The Special Edition of JARID was published in August 2015. It contained papers presenting data about mortality of people with intellectual disabilities from six different countries.
Start Year 2014
 
Description Webinar about coding underlying causes of death 
Organisation Office for National Statistics
Country United Kingdom 
Sector Private 
PI Contribution We hosted and contributed to a webinar for international colleagues about coding underlying causes of death.
Collaborator Contribution Office for National Statistics (Myer Glickman) gave a presentation at the webinar explaining WHO rules and conventions in coding.
Impact Recording of the webinar is available at: https://youtu.be/e_v6RMGpJzU
Start Year 2016
 
Description Workshop stream at IASSIDD Health SIRG meeting 2017 
Organisation International Association for the Scientific Study of Intellectual disabilities (IASSID)
Country Global 
Sector Academic/University 
PI Contribution To lead a plenary session and workshops related to mortality of people with intellectual disabilities
Collaborator Contribution Conference/workshop administrative and advertising support
Impact None yet
Start Year 2016
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Boston University
Country United States 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Catholic University of Applied Sciences of North Rhine-Westphalia
Country Germany 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Donald Beasley Institute
Country New Zealand 
Sector Charity/Non Profit 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Karolinska Institute
Country Sweden 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Queen's University
Country Canada 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Radboud University Nijmegen Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Syracuse University
Country United States 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation Trinity University
Country United States 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation University of Glasgow
Country United Kingdom 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation University of Manitoba
Country Canada 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation University of New South Wales
Country Australia 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation University of South Wales
Country United Kingdom 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description collaboration about deaths of people with intellectual disabilities from COVID-19 
Organisation University of Western Australia
Country Australia 
Sector Academic/University 
PI Contribution A smaller sub-group of the wider collaborative have been working together during the COVID-19 pandemic to share information, reports, policies and resources from different countries about the effect of the pandemic on people with intellectual disabilities. These have been brought together by us at the University of Bristol in 2-4 weekly bulletins sent to all collaborators. Key areas of concerns and discussion have been the provision of easy to understand information about the pandemic and how to keep safe for people with intellectual disabilities; the rate of deaths from coronavirus among people with intellectual disabilities; differences in signs and symptoms of the virus in this population; policies that different countries have adopted to prioritise vaccinating people with intellectual disabilities; and the impact of the pandemic on broader aspects of life. The bulletins have been important in keeping people aware of the policies and practices in different countries, and the links to resources have been shared and used by different members of the group.
Collaborator Contribution Partners in the collaboration have shared information, reports, policies and resources from their respective countries about the effect of the pandemic on people with intellectual disabilities.
Impact The outputs have been 2-4 weekly bulletins that collate the information shared by different partners.
Start Year 2020
 
Description symposia at European IASSID conference in Greece 2018 
Organisation Radboud University Nijmegen Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution We discussed with our group members the possibility of presenting a symposium at the 2018 European IASSIDD conference, collated expressions of interest, and submitted applications for two symposia which have been accepted.
Collaborator Contribution partners presenting papers at the conference are: Roundtable 1: what can mortality data tell us about health inequalities at end of life? This discussion will focus on what mortality data tells us about the end of life care in Wales and Ireland. Stuart Todd from Wales, using UK population based data, will consider the links between the nature of death and place of care for people with IDD, and the implications of this for end of life care provision. Mary McCarron will draw on Irish Data from IDS TILDA to present information on approximately 100 older adults who have died across the first 10 years of IDS TILDA. Roundtable 2: Update on what we know about mortality of people with intellectual and developmental disabilities This discussion will update our knowledge about the age and cause of death of people with IDD in Canada, the Netherlands and England. Shahin Shooshtari will present population-based mortality data (2013-2015) for a cohort of 8,629 people with IDD who live in the province of Manitoba in Canada. The mortality rates and the most common causes of death compared to the general population will be presented and discussed. Maarten Cuypers from the Netherlands will present Dutch population based mortality data (2012-2016) about people with IDD compared to matched cases from the general population. Pauline Heslop will present data about the deaths of people with ID in England, identified through the national mortality review programme.
Impact Papers to be shared after the conference in July 2018
Start Year 2017
 
Description symposia at European IASSID conference in Greece 2018 
Organisation Trinity College Dublin
Country Ireland 
Sector Academic/University 
PI Contribution We discussed with our group members the possibility of presenting a symposium at the 2018 European IASSIDD conference, collated expressions of interest, and submitted applications for two symposia which have been accepted.
Collaborator Contribution partners presenting papers at the conference are: Roundtable 1: what can mortality data tell us about health inequalities at end of life? This discussion will focus on what mortality data tells us about the end of life care in Wales and Ireland. Stuart Todd from Wales, using UK population based data, will consider the links between the nature of death and place of care for people with IDD, and the implications of this for end of life care provision. Mary McCarron will draw on Irish Data from IDS TILDA to present information on approximately 100 older adults who have died across the first 10 years of IDS TILDA. Roundtable 2: Update on what we know about mortality of people with intellectual and developmental disabilities This discussion will update our knowledge about the age and cause of death of people with IDD in Canada, the Netherlands and England. Shahin Shooshtari will present population-based mortality data (2013-2015) for a cohort of 8,629 people with IDD who live in the province of Manitoba in Canada. The mortality rates and the most common causes of death compared to the general population will be presented and discussed. Maarten Cuypers from the Netherlands will present Dutch population based mortality data (2012-2016) about people with IDD compared to matched cases from the general population. Pauline Heslop will present data about the deaths of people with ID in England, identified through the national mortality review programme.
Impact Papers to be shared after the conference in July 2018
Start Year 2017
 
Description symposia at European IASSID conference in Greece 2018 
Organisation University of Manitoba
Country Canada 
Sector Academic/University 
PI Contribution We discussed with our group members the possibility of presenting a symposium at the 2018 European IASSIDD conference, collated expressions of interest, and submitted applications for two symposia which have been accepted.
Collaborator Contribution partners presenting papers at the conference are: Roundtable 1: what can mortality data tell us about health inequalities at end of life? This discussion will focus on what mortality data tells us about the end of life care in Wales and Ireland. Stuart Todd from Wales, using UK population based data, will consider the links between the nature of death and place of care for people with IDD, and the implications of this for end of life care provision. Mary McCarron will draw on Irish Data from IDS TILDA to present information on approximately 100 older adults who have died across the first 10 years of IDS TILDA. Roundtable 2: Update on what we know about mortality of people with intellectual and developmental disabilities This discussion will update our knowledge about the age and cause of death of people with IDD in Canada, the Netherlands and England. Shahin Shooshtari will present population-based mortality data (2013-2015) for a cohort of 8,629 people with IDD who live in the province of Manitoba in Canada. The mortality rates and the most common causes of death compared to the general population will be presented and discussed. Maarten Cuypers from the Netherlands will present Dutch population based mortality data (2012-2016) about people with IDD compared to matched cases from the general population. Pauline Heslop will present data about the deaths of people with ID in England, identified through the national mortality review programme.
Impact Papers to be shared after the conference in July 2018
Start Year 2017
 
Description symposia at European IASSID conference in Greece 2018 
Organisation University of South Wales
Country United Kingdom 
Sector Academic/University 
PI Contribution We discussed with our group members the possibility of presenting a symposium at the 2018 European IASSIDD conference, collated expressions of interest, and submitted applications for two symposia which have been accepted.
Collaborator Contribution partners presenting papers at the conference are: Roundtable 1: what can mortality data tell us about health inequalities at end of life? This discussion will focus on what mortality data tells us about the end of life care in Wales and Ireland. Stuart Todd from Wales, using UK population based data, will consider the links between the nature of death and place of care for people with IDD, and the implications of this for end of life care provision. Mary McCarron will draw on Irish Data from IDS TILDA to present information on approximately 100 older adults who have died across the first 10 years of IDS TILDA. Roundtable 2: Update on what we know about mortality of people with intellectual and developmental disabilities This discussion will update our knowledge about the age and cause of death of people with IDD in Canada, the Netherlands and England. Shahin Shooshtari will present population-based mortality data (2013-2015) for a cohort of 8,629 people with IDD who live in the province of Manitoba in Canada. The mortality rates and the most common causes of death compared to the general population will be presented and discussed. Maarten Cuypers from the Netherlands will present Dutch population based mortality data (2012-2016) about people with IDD compared to matched cases from the general population. Pauline Heslop will present data about the deaths of people with ID in England, identified through the national mortality review programme.
Impact Papers to be shared after the conference in July 2018
Start Year 2017
 
Description Provision of evidence to SAGE committee 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact Discussion about deaths of people with learning disabilities from COVID-19 and the need for prioritisation for shielding and vaccination
Year(s) Of Engagement Activity 2021
 
Description series of six webinars and two conferences for collaborators 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact We held a series of six webinars open to anyone with an interest in mortality of people with intellectual disabilities (collaborators), and led by visiting speakers or members of the collaborating group. The webinars have attracted 86 different people from 14 different countries, including practitioners, policy-makers and academics. The webinars have led to a greater understanding and interest in mortality of people with intellectual disabilities, and ongoing work to issue an international call for action about the topic. All webinars were recorded and the slides and recordings made available on the seminar series website. We supplemented the webinars with three meetings that were attached to international conferences that collaborators were likely to be attending. These meetings supported more in-depth discussions and workshop approaches to sharing information and working cooperatively.
The seminar series has had wide support from a range of international academics and practitioners who are working to enhance the collection and quality of mortality data about people with intellectual disabilities. The seminar series has strengthened links between UK and international researchers, and collectively we have published our work in a special edition journal, presented conference symposia at international events, and made inroads to producing internationally comparative data about mortality of people with intellectual disabilities.
Year(s) Of Engagement Activity 2015,2016,2017