A citizens’ jury that sought to hear from people with learning disabilities about how to best include people with learning disabilities in health research. This project aimed to engage in co-design approaches throughout the whole process.
Problems and Purpose
The project aimed to hear from people with learning disabilities about health research and provide recommendations for inclusive engagement this research. In doing so, the project also aimed to challenge assumptions about who can take part in research and in what roles they can take part in. [1]
This was a time to hear from people with learning disabilities about this and generate more appropriate recommendations for this type of engagement from their input. [2]
Background History and Context
The project took place in 2019 in Scotland. [3]
Prior to the project, the Research Voices team hosted a roundtable at the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Conference. This roundtable sought feedback on the proposed Research Voices Citizens’ Jury and discussed the inclusion of people with learning disabilities in health research. Attendees were also able to offer questions for the citizens’ jury for jurors to later discuss and deliberate on. [4]
Organizing, Supporting, and Funding Entities
The project was funded by the Wellcome Trust as a joint project with The Scottish Learning Disabilities Observatory and Talking Mats. [5]
Participant Recruitment and Selection
Nine participants took part in the citizens’ jury of a possible 12 that were selected to take part. Five were men, and four were women, with ages ranging from 16 to 66 years old. These participants were recruited from the Greater Glasgow and Clyde areas through purposive and stratified sampling based off Scotland’s 2011 census. [6]
There were challenges to recruitment since the targeted participants are such a small proportion of the population. There were also challenges around working with and through organizations to recruit people, with the organizations often stating that the people they represent would not be interested or have capacity to participate. However, various measures were put in place that aided in recruitment, such as having a dedicated recruitment lead, emphasizing the benefits of taking part, utilizing active recruitment processes and making use of networks. [7]
Methods and Tools Used
Citizens’ jury.
Many considerations were made in the deliberative process to ensure all participants were able to respond and participate equally. This often involved allowing more time for people to think about the question that was asked and responding to it. It also involved acknowledging and honoring personal stories that were shared, as at times these stories were emotionally heavy and moving. [8]
What Went On: Process, Interaction, and Participation
A citizens’ jury was established and made up of people with learning disabilities. Participants deliberated on health research and provided recommendations on inclusive public engagement for it. [9]
Deciding on the question
The deliberation question was developed and decided upon through a collaborative process between health researchers and people with learning disabilities. This involved voting on a question and then further deliberation on how to best word it. [10] It was important for the group to decide on their own question to ensure that it is relevant to what matters to them. This involved a three-stage process of setting the parameters, refining the options, and finally nominal voting. This process was not rushed, and allowed for time and support so jurors could fully engage in the process. [11]
Jurors decided and then deliberated on the question “how can people with learning disabilities influence health research?” [12] This question included two sub-questions: “what research is done to help people with learning disabilities?” and “how this research is done.” [13]
Citizens’ Jury
Participants heard from seven experts (other sources say eight, see source [15]), who were briefed to make their presentations accessible to the participants, and then engaged in question-and-answer sessions. [14] Participants then deliberated on what they heard to provide recommendations that were collated into a report.
The initiative took place between July to November 2019. [15] Prior to the citizens’ jury, there were five preparatory workshops to build relationships and trust, and educate participants on deliberation practices and skills. The citizens’ jury took place over five days as well. [16]
A Talking Mats approach was used before and after the process to assess and understand how participants found taking part in the process. [17]
Influence, Outcomes, and Effects
A report with 10 recommendations was produced from this initiative with guidelines for how to include people with learning disabilities in health research. The report was written in collaboration with the participants, with minor editing to aid understanding. [18]
Analysis and Lessons Learned
Pre- and post-interviews showed that there was an increase in understanding of health research and confidence in communicating by the participants who took part in this process. [19] Expert witnesses also had positive experiences of taking part in the process and presenting to participants. [20]
This initiative also showed that people with learning disabilities are able to deliberate on complex issues when the issues are presented in an accessible way and with appropriate support and resources. This can also include taking more time to unpack and process information, and one-on-one support. At times, some participants struggled with deliberative elements such as “challenging different perspectives and finding consensus in the moment.” Memory and recalling information were also a challenge at times, but facilitators actively sought to support jurors in this. [21]
See Also
NewDemocracy Podcast Episode 42: Deliberation and disability with Rhiann Maclean and Max Hardy
NDIS Citizen’s Jury Scorecard (Australia based)
The Research Voices Citizens’ Jury: About our Citizens’ Jury (video)
References
[1] Scottish Learning Disabilities Observatory (n.d.) About Research Voices. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/about-the-project/
[2] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf
[3] Ibid.
[4] McLean, R. (2019, November) Including the voices of people with Learning Disabilities in health research: A 2019 IASSIDD roundtable. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/project-blog/iassidd-2019/
[5] Scottish Learning Disabilities Observatory (n.d.) About Research Voices. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/about-the-project/
[6] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf
[7] McLean, R. (2019, September) "Is it one of those weight loss groups?” The experience of recruiting jurors for the Research Voices Project. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/project-blog/
[8] newDemocracy (n.d.) Episode 42: Deliberation and disability with Rhiann Maclean and Max Hardy. Available at: https://www.newdemocracy.com.au/2021/02/01/episode-42-deliberation-and-disability-with-rhiann-maclean-and-max-hardy/
[9] Scottish Learning Disabilities Observatory (n.d.) About Research Voices. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/about-the-project/
[10] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf
[11] McLean, R. (2020, September) Choosing a Jury Question. Scottish Learning Disabilities Observatory. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/project-blog/choosing-a-jury-question/
[12] Scottish Learning Disabilities Observatory (n.d.) About Research Voices. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/about-the-project/
[13] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf, p. 2
[14] Ibid.
[15] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf
[16] Scottish Learning Disabilities Observatory (2021). Research Voices: Including the voices of people with learning disabilities in health research. Citizens’ Jury Evaluation Report. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/reports-and-resources/
[17] Scottish Learning Disabilities Observatory (2021). Research Voices: Including the voices of people with learning disabilities in health research. Citizens’ Jury Evaluation Report. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/reports-and-resources/
[18] Scotting Learning Disabilities Observatory (2019) Research Voices Citizens’ Jury Recommendations on Involving People with Learning Disabilities in Health Research report. Available at: https://www.sldo.ac.uk/media/1905/research-voices-citizens-jury-recommendations-report.pdf
[19] newDemocracy (n.d.) Episode 42: Deliberation and disability with Rhiann Maclean and Max Hardy. Available at: https://www.newdemocracy.com.au/2021/02/01/episode-42-deliberation-and-disability-with-rhiann-maclean-and-max-hardy/
[20] Scottish Learning Disabilities Observatory (2021). Research Voices: Including the voices of people with learning disabilities in health research. Citizens’ Jury Evaluation Report. Available at: https://www.sldo.ac.uk/inclusive-research/research-voices-project/reports-and-resources/
[21] Ibid.