Public Engagement

People with learning disabilities experience health inequalities but are frequently excluded from research and their views rarely captured in the research process.

The Scottish Learning Disabilities Observatory (SLDO) identified the need to develop robust public engagement methods with this marginalised group to improve quality and diversity in learning disabilities health research.

Establishing The Research Voices project (funded by Wellcome) SLDO also wished to challenge attitudinal barriers that result in the exclusion of people with learning disabilities from health research.

The project developed an adapted Citizens’ Jury method to empower people with learning disabilities to deliberate on conceptual and practical issues and to make recommendations to the global learning disability research community. A Citizens’ Jury is a form of deliberative democracy where groups of 12-24 people from different backgrounds come together to deliberate on challenging issues. They undertook a process of knowledge and skills development that built on the strengths and assets of the group.

The Research Voices group decided to focus their Citizens’ Jury on the following question:

How can people with learning disabilities influence health research?

Including influencing:

What research is done to help people with learning disabilities

How this research is done

The Research Voices Project was developed and lead by Angela Henderson, Deborah Kinnear, Rhiann McLean, Lois Cameron & Nikki Ewing from the Scottish Learning Disabilities Observatory. The Project was a Winner in the MVLS Engagement Awards 2019 rewarding good public engagement practice with MVLS research

• The Research Voices project
• What is a Citizen Jury 

This project was a partnership between the Scottish Learning Disabilities Observatory and Talking Mats.

The team recruited 12 people with learning disabilities from across Greater Glasgow and Clyde who were demographically representative of the wider learning disabilities population. The group also worked with a member of the National Involvement Group (NIN) who joined the interview committee for the projects lead post.

The population with learning disabilities is diverse, and to support the inclusion of people with more severe learning disabilities we collaborated with PAMIS to deliver a ‘Quieter Voices’ engagement strand. PAMIS supported us to connect with parents of people with profound and multiple learning disabilities in order to understand how they would like to be involved in health research.

• Talking Mats
• National Involvement Group
• PAMIS 

The Scottish Learning Disabilities Observatory was set up with Scottish Government funding to generate evidence and build understanding of the causes of poor health and health inequalities experienced by people with learning disabilities.

Examples of research that systematically engages people with learning disabilities are rare. There are multiple barriers to inclusive health research with people with learning disabilities that are cited in the literature, including attitudinal barriers, communication barriers and systemic barriers.

The learning from this project is relevant to any MVLS research that seeks to address health inequalities or engage with marginalised groups.

The project has been evaluated at all stages.

We invited independent observers to attend and record all engagement events and their comments and observation will be included in an evaluation which will be published June 2020.  Members of the citizen’s jury have reported positive personal outcomes resulting from their participation. The group have built trust and communication skills.  They have also gained considerable knowledge of research and research processes.

Increase in skills and knowledge

The group met for five capacity building workshops before the Citizens’ Jury in which they learned new skills including: working together as a group, asking good questions and finding consensus. They also had a workshop on health research where they learned why and how health research is conducted. These workshops were delivered by the Scottish Learning Disability Observatory and the Talking Mats team. The group put this learning into action during the intensive five day Citizens’ Jury in November and December 2019. Through the course of the Citizens’ Jury, the group heard from seven expert witnesses from the world of health research including university professors, an ethics committee member and a co-researcher with learning disabilities.

The Research Voices group moved from limited knowledge of health research to debating on the ethics and risks of being ‘flagged’ in routinely collected health data. Having just learned about what an ethics committee is and what they do, the group questioned the ‘ethics’ of not involving people with learning disabilities on these committees. They also challenged the structures of funding behind research, saying that people with learning disabilities are better placed to know the priorities for health research:

“You can watch a football game but playing the game is totally different” - group member

Increased confidence

 “The confidence the team has given me is second to none” – group member

Most group members had little to no experience of advocacy or group working, and very limited knowledge of health research.

At first, the group struggled to anticipate what a Citizens’ Jury would be like and they were anxious about what would be expected of them.

One group member was surprised at how confident she became:

 “The questions were coming to me. I felt surprised with myself.  At the beginning I don't know how I'll come up with - but I did.  I thought the beginning I would feel nervous but I was quite confident” – group member

Some group members struggled to find the confidence to ask a question to Expert Witnesses, but leaned on their peers for support (sometimes asking someone else to ask their question on their behalf, or to sit with them while they spoke):

 “I could be your voice for you” – group member

Prioritising accessibility

Although we modelled our engagement on a Citizens’ Jury, we maintained flexibility and made some key adaptations, including:

• The introduction of skills-building sessions in advance of the jury
• Shorter workshop sessions spread across a longer time period
• The use of Talking Mats to enhance and structure communication and evaluation
• Use of communication tools such as red and green cards 

We would suggest prioritising access over maintaining the fidelity of an engagement model, a traditional Citizens’ Jury process would not have facilitated the same quality of contribution from jurors as our adapted model.

Time and dedicated resource

A barrier to meaningful inclusion is a lack of dedicated time and resource. What made this project unique and successful was that we were able to dedicate 18 months and a part time employee to the task of recruiting, upskilling and supporting the group to complete a Citizens’ Jury. The dedicated resource was worth the investment and the quality of deliberation reflects the importance of time.

However, the team reflected that more time should have been allocated to two key pressure points in the project: the recruitment of Jury members and the recruitment of expert witnesses.

Inclusion from the beginning

At all stages of the project we have adopted an inclusive approach, starting with the recruitment of our project engagement lead, which was designed and conducted with input from a member of the National Involvement Network (NIN) with learning disabilities, who said following the interview:

 “I really liked being involved in making the [Talking] mat. At the interview I knew what I had to do and I felt the other interviewers listened to me and my opinion.”

The involvement of a person with learning disabilities was possible from the start of the project because we were able to harness the skills and experience of a person from the NIN who was trained in Talking Mats, with a clear independent role which was central to the interview process and improved the quality of the information gained by panel members. The Talking Mats design gave all panel members particular insight into those ‘soft skills’ that were felt to be crucial to the project and that might not have come through so clearly if only the traditional presentation and questions were used.

The little things  

The reality of piloting an approach to engagement is that it can be hard to know what will have the most impact. As a team, it was important for us to tune into the little things that were meaningful to group members

An example of this was that the group felt insecure about what to wear to the Citizens’ Jury, particularly as they knew they may be meeting smartly dressed professionals. In the workshop directly preceding the jury, they asked for matching t-shirts to wear. This came as a surprise, it wasn’t planned or budgeted for. But we tuned into what was behind the request: a wish to avoid feeling underdressed (and disempowered), a drive to look cohesive, like a team. The result was that the group felt heard, evidenced in a conversation between two group members on the first day of the jury:

Juror 5: “[the facilitator] doesn’t just say she’s listening, she shows she is”

Juror 8: “Yeah I can’t believe we actually got them [the t-shirts]” 

Relationships

It was important for this group to build enough trust in each other to be able to respectfully challenge each other and deliberate together as part of the jury. It was important for group members to spend the initial workshops learning about each other and getting the opportunity to work together and socialise together.

“the jury would be less meaningful if we weren’t all close” – group member

 Jurors also acted as natural advocates and supports for each other, encouraging participation.

“I’m proud of [other juror] for taking the lead and speaking” – group member

The legacy of the group is that through their work together they have evidenced that people with learning disabilities have the capacity and desire to engage in deliberation about complex topics. The resources used to support the group and plan the adapted Citizens’ Jury will be made available online on the SLDO website.

The process also had a lasting impact on Expert Witnesses who provided testimony to the jury. They found themselves immersed in a different type of expertise; the experience of the jurors. The Citizens’ Jury challenged expert witnesses by asking them about real life impact as well as questioning the tone or content of their presentations and asking them poignant questions. The group challenged the preconceptions of leaders in the field of policy and research and demonstrated that people with learning disabilities can have well informed opinions about complex ideas.

“I was really humbled, challenged and inspired by the questions and reflections from the jury… I spent the entire train journey home considering some of their reflections, thoughts and their questions” - Expert Witness

“This jury was an excellent example of how important people’s lived experience is in shaping health research” - Expert Witness

The publication of the Jury Consensus report, expected March 2020, will be shared with the global health research community. A key strand of evaluation in the coming months will focus on the impact of the Jury’s recommendations, and the application of the process learning from the project.

For more details about this project and the ongoing engagement work at the Scottish Learning Disabilities Observatory please contact Angela Henderson and Rhiann McLean. 

For details about the project and final outputs visit Research Voices Project