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Innovative data use: can we learn more from what is already available?

DANEMAYER, Jamie
September 2023

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A short talk given at the Disability Innovation Summit: Inclusive Interactions conference organised by GDI hub on 13 Sep 2023.

The use of published datasets on the prevalence of disability is reviewed. The numbers of datasets and their harmonisation is described and the advantages, limitations and opportunities for use are outlined. 

The global birth prevalence of clubfoot: a systematic review and meta-analysis

SMYTHE, Tracey
ROTENBURG, Sarah
LAVY, Chris
August 2023

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Estimates of the birth prevalence of clubfoot in low and middle income settings range from 0.5 to 2 per 1000 births. However, there is currently no estimate of global birth prevalence of clubfoot.

A systematic review of studies was carried out reporting the birth prevalence of clubfoot across all countries and regions worldwide in the last 10 years. Africa Wide Information, EMBASE, CINAHL, Global Health, LILACS and Medline databases were searched for relevant studies from January 1st 2012 to February 9th 2023. Pooled prevalence estimates were calculated using the inverse variance method, and a random effects model was applied to account for heterogeneity between studies.

 

eClinicalMedicine,  Vol 63 September, 2023

DOI:https://doi.org/10.1016/j.eclinm.2023.102178

Assistive technology in Korea: Findings from the 2017 National Disability Survey

DANEMAYER, Jamie
LIN, Myung-Joon
July 2023

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Explicitly monitoring the need, use and satisfaction of assistive product (AP) provision is essential to support population health and healthy longevity in ageing/aged countries, like Korea. We present findings from the 2017 Korea National Disability Survey (NDS) on AP access and compare them to international averages, introducing Korea’s data into the wider coherence of global AP research.

 

Disability and Rehabilitation: Assistive Technology

https://doi.org/10.1080/17483107.2023.2225565 

 

Assistive technology access in longitudinal datasets: a global review

DANEMAYER, Jamie
MITRA, Sophie
HOLLOWAY, Cathy
HUSSEIN, Shereen
March 2023

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Functional limitations become more prevalent as populations age, emphasising an increasingly urgent need for assistive technology (AT). Critical to meeting this need trajectory is understanding AT access in older ages. Yet few publications examine this from a longitudinal perspective.

This review aims to identify and collate what data exist globally, seeking all population-based cohorts and repeated cross-sectional surveys through the Maelstrom Research Catalogue (searched May 10, 2022) and the Disability Data Report (published 2022), respectively. Datasets incorporating functional limitations modules and question(s) dedicated to AT, with a wave of data collection since 2009, were included.

 

International Journal of Population Data Science; 2023

Vol. 8 No. 1 (2023): IJPDS Standard Issue
 https://doi.org/10.23889/ijpds.v8i1.1901

Assistive Technology Changes Lives: an assessment of AT need and capacity in England

AUSTIN, Vicki
PATEL, Dilisha
DANEMAYER, Jamie
MATTICK, Kate
LANDRE, Anna
SMITOVA, Marketa
BANDUKDA, Maryam
HEALY, Aoife
CHOCKALINGAM, Nachiappan
BELL, Diane
HOLLOWAY, Kathy
2023

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The aim of this research was to undertake a Country Capacity Assessment (CCA) to inform a more integrated approach to Assistive Technology (AT) provision in England. The results aim to support policymakers in identifying actions to strengthen service delivery to better meet disabled people’s needs, improving outcomes for AT users and reducing inefficiencies in the current approach. This report was prepared by Global Disability Innovation (GDI) Hub for the Disability Unit in the Cabinet Office His Majesty’s Government (HMG). The research was undertaken from November 2022 to March 2023 and led by the Global Disability Innovation (GDI) Hub, which is the World Health Organization (WHO) Global Collaborating Centre on AT access, using WHO tools in the Assistive Technology Assessment (ATA) suite

Are persons with disabilities included in the effort to leave no-one behind? Mapping disability data in development in Asia and the Pacific

CBM GLOBAL’S INCLUSION ADVISORY GROUP
February 2022

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In the Asia Pacific region, UNFPA and partners work together to implement the Incheon Strategy to “Make the Right Real” for Persons with Disabilities. The Incheon Strategy is the region’s first set of disability-specific development goals to track progress towards the fulfilment of rights of persons with disabilities.

In the region, it is estimated that there are over 650 million persons with disabilities. However, without accurate, timely and disaggregated data, countries are unable to develop effective policies and programmes, monitor the wellbeing of persons with disabilities and evaluate the equity and impact of development efforts. This endangers country commitments to ‘leave no one behind’ and undermines their obligations to the Convention on the Rights of Persons with Disabilities.

This groundbreaking report demonstrates the importance of ensuring data is inclusive and provides recommendations for immediate action in order to improve the collection, analysis and reporting of disability data

Estimating need and coverage for five priority assistive products: a systematic review of global population-based research

DANEMAYER, Jamie
BOGGS, Dorothy
DELGADO RAMOS, Vinicius
SMITH, Emma M
KULAR, Ariana
BHOT, William
RAMOS-BARAJAS, Felipe
POLACK, Sarah
HOLLOWAY, Catherine
January 2022

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Assistive technology (AT) includes assistive products (APs) and related services that can improve health and well-being, enable increased independence and foster participation for people with functional difficulties, including older adults and people with impairments or chronic health conditions. This paper uses the umbrella term ‘functional difficulty’ (FD) to refer to all of these groups. This systematic review was undertaken to identify studies presenting population-based estimates of need and coverage for five APs (hearing aids, limb prostheses, wheelchairs, glasses and personal digital assistants) grouped by four functional domains (hearing, mobility, vision and cognition).

 

BMJ Glob Health. 2022; 7(1): e007662

doi: 10.1136/bmjgh-2021-007662

Measuring assistive technology supply and demand: A scoping review

DANEMAYER, Jamie
BOGGS, Dorothy
SMITH, Emma
DELGADO RAMOS, Vinicius
BATISTELLA, Linamara R
HOLLOWAY, Catherine
POLACK, Sarah
December 2021

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The supply of and market demand for assistive products (APs) are complex and influenced by diverse stakeholders. The methods used to collect AP population-level market data are similarly varied. In this paper, we review current population-level AP supply and demand estimation methods for five priority APs and provide recommendations for improving national and global AP market evaluation.

Abstracts resulting from a systematic search were double-screened. Extracted data include WHO world region, publication year, age-groups, AP domain(s), study method, and individual assessment approach.

 

Assistive Technology 
The Official Journal of RESNA
Volume 33, 2021 - Issue sup1: Companion Papers to the Global Report on Assistive Technology

https://doi.org/10.1080/10400435.2021.1957039

Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

The definition of disability and disability related data collection and analyses - Applying the IASC Guidelines in the northwest Syria humanitarian response

UNHCR INCLUSION TECHNICAL WORKING GROUP, SYRIA PROTECTION CLUSTER (TURKEY)
February 2021

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Action by humanitarian partners to strengthen inclusion of persons with disabilities in the humanitarian response in an evidencebased manner remains highly needed – this note aims to support that effort by providing background and explanation on the definition of disability as well as on how to interpret and use data related to disability.

 

The note also provides elaboration on the Syria Protection Cluster (Turkey) recommended disability-related data collection methodology for humanitarian organizations and entities in northwest Syria. Thereby the note aims to stimulate and assist the broader humanitarian community in northwest Syria in adopting the Washington Group Short Set of Questions on Functioning, especially in relation to disability focused data collection and in understanding and utilizing assessment findings, specifically prevalence-rates of disability in northwest Syria.

 

For more elaborated description of the situation of persons with disability in northwest Syria and practical suggestions for humanitarians on enhancing inclusion of persons with disabilities in programming, this note is to be read in conjunction with the ITWG “Self-reported barriers to activities of daily living of persons with disabilities living in IDP sites in northwest Syria” brief report and recommendations.

 

Impact of Covid-19 on people with disabilities in Albania

LAHE, Alma
SHEHU, Arlinda
January 2021

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This report aims to assess the level of access that People with Disabilities have to services and institutions during the pandemic period, as well as to analyze their economic and financial needs to cope with the consequences of the crisis caused by COVID-19.

The survey was conducted in the form of a quantitative field survey. 360 individuals participated in the survey: 199, or 55.3%, of the participants were people with disabilities (PWDs) while the remaining 161 persons, or 44.7%, were guardians or parents of a person with disabilities. The survey was conducted in all 6 districts of the country. The questionnaire was designed to gather information on the perceptions, attitudes, behaviors and experiences of people with disabilities during the COVID-19 period.

Global estimates of the need for rehabilitation based on the Global Burden of Disease study 2019: a systematic analysis for the Global Burden of Disease Study 2019

CIEZA, Alarcos
CAUSEY, Kate
KAMENOV, Kaloyan
HANSON, Sarah Wulf
CHATTERJI, Somnath
VOS, Theo
December 2020

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Background: Rehabilitation has often been seen as a disability-specific service needed by only few of the population. Despite its individual and societal benefits, rehabilitation has not been prioritised in countries and is under-resourced. We present global, regional, and country data for the number of people who would benefit from rehabilitation at least once during the course of their disabling illness or injury.

 

Methods: To estimate the need for rehabilitation, data from the Global Burden of Diseases, Injuries, and Risk Factors Study 2019 were used to calculate the prevalence and years of life lived with disability (YLDs) of 25 diseases, impairments, or bespoke aggregations of sequelae that were selected as amenable to rehabilitation. All analyses were done at the country level and then aggregated to seven regions: World Bank high-income countries and the six WHO regions (ie, Africa, the Americas, Southeast Asia, Europe, Eastern Mediterranean, and Western Pacific).

 

Findings: Globally, in 2019, 2·41 billion (95% uncertainty interval 2·34–2·50) individuals had conditions that would benefit from rehabilitation, contributing to 310 million [235–392] YLDs. This number had increased by 63% from 1990 to 2019. Regionally, the Western Pacific had the highest need of rehabilitation services (610 million people [588–636] and 83 million YLDs [62–106]). The disease area that contributed most to prevalence was musculoskeletal disorders (1·71 billion people [1·68–1·80]), with low back pain being the most prevalent condition in 134 of the 204 countries analysed.

 

Interpretation: To our knowledge, this is the first study to produce a global estimate of the need for rehabilitation services and to show that at least one in every three people in the world needs rehabilitation at some point in the course of their illness or injury. This number counters the common view of rehabilitation as a service required by only few people. We argue that rehabilitation needs to be brought close to communities as an integral part of primary health care to reach more people in need.

 

VOLUME 396, ISSUE 10267, P2006-2017, DECEMBER 19, 2020
https://doi.org/10.1016/S0140-6736(20)32340-0

Trends in prevalence of blindness and distance and near vision impairment over 30 years: an analysis for the Global Burden of Disease Study

GBD 2019 Blindness and Vision Impairment Collaborators
December 2020

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To contribute to the WHO initiative, VISION 2020: The Right to Sight, an assessment of global vision impairment in 2020 and temporal change is needed. This paper aims to extensively update estimates of global vision loss burden, presenting estimates for 2020, temporal change over three decades between 1990–2020, and forecasts for 2050.

A systematic review and meta-analysis of population-based surveys of eye disease from January, 1980, to October, 2018 was carried out. Only studies with samples representative of the population and with clearly defined visual acuity testing protocols were included. Hierarchical models were fitted to estimate 2020 prevalence (with 95% uncertainty intervals [UIs]) of mild vision impairment (presenting visual acuity ≥6/18 and <6/12), moderate and severe vision impairment (<6/18 to 3/60), and blindness (<3/60 or less than 10° visual field around central fixation); and vision impairment from uncorrected presbyopia (presenting near vision <N6 or <N8 at 40 cm where best-corrected distance visual acuity is ≥6/12). We forecast estimates of vision loss up to 2050.

 

https://doi.org/10.1016/ S2214-109X(20)30425-3

Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
et al
October 2020

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This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.

Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

Long-term outcomes for children with disability and severe acute malnutrition in Malawi

LELIJVELD, Natasha
GROCE, Nora
PATEL, Seema
NNENSA, Teresa
CHIMWEZI, Emmanuel
GLADSTONE, Melissa
MELLEWA, Macpherson
WELLS, Jonathon
SEAL, Andrew
KERAC, Marco
October 2020

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Severe acute malnutrition (SAM) and disability are major global health issues. Although they can cause and influence each other, data on their co-existence are sparse. This study aims to describe the prevalence and patterns of disability among a cohort of children with SAM.

A longitudinal cohort study in Malawi followed SAM survivors up to 7 years postdischarge. Clinical and anthropometric profiles were compared with sibling and community controls. Disability at original admission was identified clinically; at 7-year follow-up a standardised screening tool called ‘the Washington Group Questionnaire’ was used.

 

BMJ Global Health 2020;5:e002613

http://dx.doi.org/10.1136/bmjgh-2020-002613

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

When does disability begin? Identifying the age of onset

MONT, Daniel
October 2020

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Issues are discussed about adding to the Washington Group questions to collect information on the age of disability onset. Issues include:

  1. People may not remember the exact age
  2. The exact age may be difficult to determine
  3. People may have onsets of difficulties in different domains at different times

 

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

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