Creativity in public involvement: Supporting authentic collaboration and inclusive research with seldom heard voices

Abstract: Background: The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. Methods: This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members. Results: Creative methods enabled the PI group members to successfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that their active involvement in the PI group has had on their personal development and perspectives on research. Conclusion: The impact of using creative methods in PI for this patient-reported outcome measure (PROM) development project improved collaboration and understanding between PI members and the academic team. The authentic engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

Public involvement (PI) is the term used to describe the role of members of the public in research projects. People carrying out research about healthcare realise that involving members of the public is important; it can help researchers to plan and prepare projects so that the way research is carried out and reported makes sense to patients and ensures that we research important questions. Public involvement typically uses group meetings and discussions which can be difficult for people who have communication difficulties. This article describes a process for introducing creative activities that was used in a PI group for people who have communication difficulties. The activities included using videos, pictures and objects to support group members to be more involved in meetings. The research team noted examples of when these activities were successful and gathered feedback about them from group members. Using activities supported people with communication difficulties to interact with one another in PI meetings. The activities helped them to understand the words and processes that are used in research so that they could help to make these aspects of the project simpler for others. They also discovered how their own skills and experience fit into the project. Thinking creatively and using activities rather than just words and talking helped to establish a successful public involvement group with people who have communication difficulties. The group has supported the research team to create a more accessible research project. Using these types of activities may be a helpful way to involve other people who find groups and discussion difficult in research.