Raising Voices for Better Choices
Inclusive research practice has to be a priority for researchers and funders in this post-COVID era. There is a lot to gain from working in collaboration with people with real world data trapped within their own lived experience.Dr Sondra Butterworth
Inclusive mixed methods research is like weaving a tapestry of knowledge that celebrates diversity, embraces equality, and promotes positive change in communities. By using both quantitative and qualitative methods, we ensure that every voice is heard and valued, contributing to a more equitable and inclusive world.
Remember, your voice matters in our research journey
towards a better and more inclusive future!
The concept of inclusive research was one which had primarily been used in the field of learning disabilities. It was grounded in approaches that include the views of research participants.
(Walmsley & Johnson 2003; Kiernan 1999).
The Power of Mixed Methods: Mixed methods research combines both quantitative and qualitative methods. It’s like using a magnifying glass and a telescope together! This approach lets us see the big picture (quantitative data) and understand the details (qualitative insights) at the same time.
Inclusivity and Equality: In our research, we make sure that everyone’s voice is heard. We include people from different backgrounds, ages, and abilities. This helps us create a fair and equal representation of the community we’re studying.
Equity and Fairness: Equity means giving everyone what they need to succeed. We ensure that all community members have an equal opportunity to participate in our research. This might mean providing translations, accessible materials, or adapting methods for diverse needs
Inclusive Research is said said to empower the participants and produces authentic knowledge. Advocates of inclusive research state that a central premise in inclusive research is that those who have in the past so often been the mere objects of investigation themselves, become the agents of their own transformation.
The LEARN study team are focused on understanding the experience of participants living with neurodegenerative diseases who take part in interventional clinical trials. Working with charity and industry partners we are exploring patient centered design of clinical trials of small molecules for disease modification or symptomatic relief as well as Advanced Therapy Medicinal Products (ATMPs, i.e. cell transplantation and gene therapy). This work is feeding into improved trial design platforms and patient communication tools.
Our RareQoL Team are delighted to be working with the Learn Study Team based at Cardiff University
This research study is funded by the Michael J Fox Foundation.
EDIRA: Equality Diversity and Inclusive Research Association
Dr Sondra Butterworth invited Associate Professor Dr Andrew Mitchell from the University of Chester to join her in chairing EDIRA.
Eminent professionals from diverse background agreed to participate in 3 consultation events in 2022.
Based on their feedback and guidance we developed a Research Question and received ethical approval from the University of Chester to undertake a inclusive research small study.
The survey was distributed to members of our Rare Community Network and members of the Genomics Partnership Wales Sounding Board.
The outcomes from the study are being written up for publication. The results will be shared at our EDIRA conference in May 2023.
If you are interested in community based research and would like our involvement,