Research Voices

Background

People with learning disabilities experience major health inequalities that can impact on all aspects of their lives. They also face barriers to engagement in research that seeks to identify, influence and address their health needs. Organisations that fund, approve and review research all agree that patients and the public should be involved in research. However, very little is known about the views of people with learning disabilities on health research.

The Research Voices project was funded by the Wellcome Trust in 2018 as a joint project between The Scottish Learning Disabilities Observatory and Talking Mats. This project is about bringing people with learning disabilities together to:

  • Provide insight into the views of people with learning disabilities on health research
  • Challenge attitudinal barriers to involvement of people with learning disabilities in research as participants, subjects and collaborators
  • Challenge structural barriers that limit opportunities for inclusion in research
  • Generate recommendations supporting inclusive public engagement in health research.

This project established a Citizens’ Jury of people with learning disabilities to debate and deliberate on health research. A Citizens’ Jury is a demographically representative group of Citizens who come together to deliberate on important issues and offer recommendations for the future.

The Research Voices Citizens’ Jury explored this key question:

  • How can people with learning disabilities influence health research?

This involved looking at the different types of research to help people with learning disabilities and how this research is done. 

The Jurors produced 10 recommendations for how to address barriers to inclusion in health research experienced by people with learning disabilities. You can read the report below, alongside multiple outputs from the project, including blogs about the process, short films, case studies and an evaluation report. 

This project was led by Rhiann McLean and Angela Henderson, with close involvement from colleagues from across the University of Glasgow School of Health and Wellbeing, NHS, PAMIS and other contributors. Some of the Jurors have continued to be involved in SLDO research, including John Cassidy (profile below). 

Outputs and resources from Research Voices

The Jurors came up with 10 recommendations to address barriers to inclusion in health research for people with learning disabilities. 

These blogs, written by Public Engagement Lead Rhiann McLean and Talking Mats Director Lois Cameron, contain rich learning and information about the process of co-creating the Research Voices Citizens' Jury, from the challenges of recruiting and jurors to working collaboratively to ensure the voices of people with profound learning disabilities were included in the project. 

Some of the people involved in Research Voices

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Angela Henderson

Angela was formerly the Director for Policy and Impact for the Scottish Learning Disabilities Observatory and remains an affiliate team member, having moved in 2024 to work with the Scottish Government leading the development of annual health checks and learning disabilities data. Angela is interested in how evidence is used in policy making and was involved in many projects at the Observatory. These included: Understanding the impact of Covid-19 on people with learning disabilities The Research Voices Project Helping to set up the SPIRE learning disabilities data project Analysing information about drug prescribing for people with learning disabilities

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John Cassidy

John participated in the Citizens' Jury as part of the Research Voices project with SLDO in 2018, and has since worked with the Observatory on a number of projects offering his insights and lived-experiences to research and inclusive communication projects, including This is Me: Valuing the lives of people with learning disabilities, and Research for Everyone. John is a valued member of People First Scotland, a Board Member of Values Into Action Scotland and also an active contributor to various projects led by the Health Foundation, Kings College London and NHS Scotland, as well as working with researchers in Psychology and General Practice here at the University of Glasgow School of Health and Wellbeing.

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Dr Laura Hughes

Laura is a Lecturer in Clinical Psychology at the University of Glasgow, and an affiliate of the Scottish Learning Disabilities Observatory, having joined the team in 2015. With the Observatory, Laura was involved in projects looking at the health of people with learning disabilities in a number of large data-sets, including primary health care records, Scotland's 2011 Census and health records of people born with Down Syndrome in Scotland over a 25 year period. Laura studied Psychology and has extensive experience of working with people with learning disabilities in her previous roles, for example, as a Befriender, a Learning Assistant and an Assistant Psychologist. Read more about Laura at the link below

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Professor Deborah Cairns

Deborah is the Director of the Scottish Learning Disabilities Observatory and Professor of Health and Neurodevelopmental Conditions, in the School of Health and Wellbeing, at the University of Glasgow. Deborah is passionate about her research which aims to improve the health of people with learning disabilities and their families. She has worked on many different projects about people with learning disabilities including: cancer incidence, cancer screening, multi-morbidity (having two or more health conditions), oral health and COVID-19, to name a few. She has also worked on projects about the physical and mental health of family members who support someone with a learning disability. Deborah is committed to conducting research that has impact and works closely with self-advocates with learning disabilities, family carers and third sector organisations who are pivotal in all of her work and who have a shared vision of ensuring the human rights of all people with learning disabilities are recognised, supported and upheld. Read more about Deborah here.