The inaugural meeting of the expert advisory panel for the Unspoken Voices Project was held at the National Star College (NSC) in July. During this project I aim to put user experience at the heart of my enquiry, so the expert group are a critical lintel in the framework of my research. As such, the success and integrity of this and future expert group meetings are vital to the overall project. I stumbled upon many logistical barriers whilst planning the inaugural meeting. These included coordinating busy calendars, accommodating long journeys and a seeking suitable and available venues. This resulted in a lot of uncertainty surrounding the viability of the meeting. As late as the week prior to the meeting, unforeseen events cast doubt over whether all the group members would be able to attend. It was therefore with great relief and joy that my supervisor, four group members and I could gather on a sunny day in the beautiful grounds of the NSC in mid-July.
The experts brought a range of life experiences to their role as advisors. Two retired professionals, a speech and language therapist (presenting feedback from two of the students at NSC), and a communication aid user with experience of supporting AAC services and product developers came together to offer their advice on conducting research with people with communication difficulties. Three group members had experienced communication difficulties from childhood and two had acquired difficulties during their adult life. One group member had experience of being involved in health research but for the others, this was their first role within an advisory group for a research project.
Members of the group experienced a range of communication difficulties. As a speech and language therapist, my instinct was to try to predict the communication needs of the group and to try to make accommodations for any potential difficulties in advance of the meeting. As a researcher, I took a step back and handed the authority for such decision-making over to the experts. I asked the group how I should conduct the meetings, in what form they would like to receive information and how I should manage communication with all members. As a group, we agreed that meetings should be face-to-face to facilitate communication (although many experts were happy to join the meeting via video-conferencing), in the afternoons to accommodate those who have to travel and should last no more that 2 1/2 hours. Members wanted to receive information about the group via email and many expressed interest in receiving information via a web-based information sharing site, such as this blog. Group members generally felt that information needed to be provided in simple language, may benefit from pictorial support and that it would be useful to have short video summaries of agendas and minutes.
In order that the project is carried out ethically I need to complete a very detailed form, which summarises exactly what I plan to do during the research, how I plan to do it and how I intend to safeguard the participants, to a health research ethics committee. I must be transparent about how I aim to recruit people to the project, ensuring that potential participants are fully informed about what their involvement will entail and what will happen to the information they provide. The standard way of doing this is by providing a very detailed, text-based participant information packs and then securing written consent for each specific element of the project process. I presented drafts of the type of information packs commonly available to research participants. All the experts in the advisory group felt that the level of written information in the draft documents was far too detailed for people with communication difficulties. The consensus was that text needed to be bigger with fewer words and more pictures. The experts also suggested that information should be available on a video that people could access via a link in an email.
I sought the group’s advice about how to make the project attractive to potential participants. We discussed how to encourage people to be involved in the project and the group felt that a strong image might help. The experts reflected on what motivated them to be involved in the group. One individual said “I want to give something back” and another described how communication aids had helped them to overcome the frustration of not being able to say what was on their mind. Promoting the opportunity to get involved and being part of something that could influence change were considered to be key drivers for participation. There was a feeling that too much written information could put some potential participants off and that being able to contact people by email rather than post may be more successful. This feedback will help me to shape my recruitment strategy to fit the needs of people with complex communication disabilities but will involve significant creativity. I have a list of skills I will need to seek out if I am going to realise these suggestions and make my project resources attractive and accessible.
I am already looking forward to meeting with my expert group again in the autumn. In the meantime I have plenty of work to do. I need to find a balance between presenting enough information to people involved in the project that they are suitably well-informed, without overwhelming people for whom written text is difficult to decode. I will delve into the dizzying world of vlogging and YouTube to learn about producing engaging and informative videos for both my expert group and for potential participants. I must also develop my skills in presenting complex and dense information in simple language and use strong images to support my expert advisory group in understanding an appropriate level of detail about the project.
One of the aims of the clinical doctoral research fellowship, the funding grant that supports this project, is to develop clinical-academic leaders. Fellows have a responsibility to develop or to maintain their clinical skills while developing academic and research competence. Working with my advisory group over the course of the project will provide an invaluable opportunity to work in direct partnership with people who have communication difficulties. I will also be able to learn directly from the experts how best to support their participation in this project specifically and more broadly in roles outside of their homes and families. This will be one of the ways I build on my clinical experience, enhance my clinical skills and establish new horizons for my clinical practice.