Treialon Cymru and Inclusivity in Trials
Presentations include
- Introduction to the INCLUDE initiative, roadmap and guidance, and an overview of various INCLUDE frameworks (specific example of on the INCLUDE Impaired Capacity to Consent Framework): Dr Victoria Shepherd
- Improving LGBTQ+ inclusivity in trials: Dr Adam Williams
- Talking Trials: Martina Svobodova and Dr Nina Jacob
NIHR INCLUDE initiative
Clinical trials provide evidence for the effectiveness and safety of healthcare interventions. However, populations recruited into trials are often not representative of the target population. The NIHR INCLUDE initiative aimed to address the lack of representation in health and care research. As part of this work, a series of guidance and frameworks have been developed to help trial teams think about how their trial might make it easier, or more difficult, for some people to take part in a trial. One example is the INCLUDE Impaired Capacity to Consent Framework which aims to help trial teams think specifically about whether adults with impaired capacity to consent should be included in their trial for its results to be widely applicable, what challenges there may be to making this possible, and how to reduce those challenges.
Talking Trials
People from minority ethnic backgrounds face health inequalities but are under-represented in research designed to address these inequalities. The Talking Trials project (set up as a partnership between the Centre for Trials Research and South Riverside Community Development Center in Cardiff) utilises an adopted deliberative democracy approach, combining it with less verbo-centric participatory art approaches. Together with a group of co-researchers from diverse ethnic backgrounds, we discuss health research and seek to provide well-considered recommendations to clinical trial stakeholders to facilitate inclusive engagement and involvement in research. We explore how people from diverse ethnic communities can influence health research including both what research is done and how, shifting the focus from co-researchers communicating barriers towards actively identifying solutions.
Presenters
Dr Victoria Shepherd is a Senior Research Fellow in the Centre for Trials Research at Cardiff University where she leads a research programme exploring inclusivity of under-served populations in trials with a particular focus on the ethical and methodological challenges around trials involving adults with impaired capacity to consent. Her current project (CONSULT) includes exploring the barriers and facilitators to conducting trials involving adults who lack capacity, the development of a decision support intervention for families acting as research proxies, and a SWAT to evaluate the decision support intervention in a range of trials and settings. She led the development of the ‘NIHR INCLUDE Impaired Capacity to Consent Framework’, which aims to support researchers to consider the ethical, legal, and methodological issues surrounding trials involving adults with impaired capacity, and to design trials that are more inclusive of these populations.
Martina Svobodova
Martina Svobodova is a Research Associate in the Centre for Trials Research at Cardiff University. Her research interests include the undertaking and improvement of the various clinical trial methodologies and exploring alternative ways of improving these via public involvement and art based approaches. She chairs the CTR Equality and Diversity committee.
Dr Nina Jacob
Dr Nina Jacob is a qualitative researcher at Cardiff University’s Centre for Trials Research. Her background is in medical sociology. She is experienced in deploying a wide range of qualitative methods and using sociological theories in advancing the science of improvement in health and social care.
Martina and Nina co-lead on the Talking Trials project with a current award funded by the ‘Rethinking public Dialogue’ UK Research Innovation experimentation fund.
This event is being run by Treialon Cymru if you have any questions, please contact the event team.
Free