Centre for Trials Research, College of Biomedical and Life Sciences, Cardiff University, Cardiff, UK.
Social and Community Medicine, Bristol Medical School, University of Bristol, Bristol, UK.
Health Expect. 2023 Jun;26(3):1236-1245. doi: 10.1111/hex.13740. Epub 2023 Mar 2.
Clinical trials must include diverse participants to ensure the wide applicability of results. However, people from ethnic minorities are included in clinical trials at rates lower than expected given their share of the population. Working with South Riverside Community Development Centre (SRCDC), Talking Trials used public engagement to foster discussions around the underrepresentation of those from minority ethnic communities in clinical trials and to identify and address concerns surrounding trial participation.
We conducted three workshops with 13 co-researchers from minority ethnic backgrounds. We explored perceptions and understanding of clinical trials alongside participatory art activities to help move away from verbocentric methods of communication. These artworks formed an exhibition that was presented to the community, prompting further discussions and engagement.
Co-production workshops were an effective tool to introduce the public to trial research. With little knowledge of clinical trials at the beginning of the process, our co-researchers formed a cohesive group, sharing initial fears and mistrust towards trials. As conversations progressed these attitudes clearly shifted. Artwork produced during the workshops was incorporated into an exhibition. Quotes and creative pieces from the group were included to reflect the themes identified. Presenting the exhibition at Riverside Festival enabled further engagement with a wider diverse community. The focus on co-production helped build a network of individuals new to research and keen to become involved further.
Inclusive and democratic co-production, enriched by participatory art practices, provided a powerful means of enabling our group to create new insights and foster new relationships. Projects like Talking Trials can diversify the research process itself-for example, four co-researchers have commenced lay research partner roles on trial management groups and a lay advisory group is in development.
Three members of staff at SRCDC were on the project delivery group and involved in the initial project design, subsequently helping to connect us with members of the Riverside community to work as co-researchers. Two of the SRCDC staff are co-authors of this manuscript. The project had 13 public co-researchers guiding the direction of this research and creating the artwork displayed in the art exhibition.
临床试验必须纳入多样化的参与者，以确保研究结果具有广泛的适用性。然而，少数民族人群参与临床试验的比例低于预期，这与他们在人口中所占的比例不符。通过与南河滨社区发展中心（South Riverside Community Development Centre，SRCDC）合作，Talking Trials 使用公众参与的方式，就少数民族群体在临床试验中代表性不足的问题进行讨论，并确定和解决参与试验的相关问题。
我们与 13 位具有少数民族背景的共同研究人员合作，开展了 3 次研讨会。我们通过参与式艺术活动，探讨了公众对临床试验的看法和理解，以帮助摆脱以语言为中心的沟通方式。这些艺术作品形成了一个展览，向社区展示，引发了进一步的讨论和参与。
共同制作研讨会是向公众介绍试验研究的有效工具。在项目开始时，我们的共同研究人员对临床试验知之甚少，但他们形成了一个紧密的团体，分享了对试验的最初恐惧和不信任。随着对话的进行，这些态度明显发生了转变。工作坊期间创作的艺术品被纳入展览。小组的引语和创意作品被纳入其中，以反映确定的主题。在河滨节上展示展览，使更多不同背景的社区能够进一步参与。对共同制作的关注有助于建立一个新的研究人员网络，他们对参与研究充满热情。
包容性和民主的共同制作，通过参与式艺术实践得到丰富，为我们的团队提供了一种有力的手段，使他们能够创造新的见解并建立新的关系。像 Talking Trials 这样的项目可以使研究过程本身多样化，例如，有 4 位共同研究人员开始担任临床试验管理小组的初级研究合作伙伴，并且正在组建一个初级咨询小组。
SRCDC 的 3 名工作人员参与了项目交付小组，并参与了项目的初步设计，随后帮助我们与河滨社区的成员联系，作为共同研究人员一起工作。SRCDC 的 2 名工作人员是本文的共同作者。该项目有 13 名公众共同研究人员指导研究方向，并创作了艺术展览中展示的艺术品。
