Oxford and Oxford Health BRCs have set up a patient and public involvement group. The Diversity in Research Group, a name chosen by its members, aims to make involvement in health research more engaging to diverse communities, especially those not usually involved. Researchers talk to the group about their research and we discuss how it can reach a wider audience.
The members are from communities under-represented in research. Most are from minority ethnic communities and there are also younger adults. If you are a member of the public or a researcher and want to know more or join the group, please contact Rachel.Taylor@ouh.nhs.uk.
Biographies of group members
Kiran Kaur Manku
“I am passionate about accessible healthcare and inclusion. I am a carer for my brother with severe learning difficulties, autism, and anxiety. I have been actively engaged in mental health and developmental disorder research, and lobby for adolescents with disabilities to be able to access appropriate healthcare. I am Co-Director of a thinktank, The 1928 Institute, researching and representing British Indians and engage with senior policymakers, Parliamentarians, and NHS staff. I conduct community engagement and provide empirical evidence on the communities’ challenges, wants, and needs.”
Angeli Vaid
“I have lived and worked in Oxford for the last 20 years. I have three children and am a family carer for my autistic son. I have an Indian-English background and lots of family in India. I am a freelance trainer and consultant working on a range of health and social care projects in the charity, statutory and university sectors. The medical research world is new to me; I am on a steep but stimulating learning curve and hopeful that I can make a constructive and positive contribution to the Oxford and Oxford Health BRCs’ work.”
Rosemary Musesengwa
“I have been working in and am passionate about Patient & Public Engagement and Involvement for over 15 years. My main interest is the qualitative evaluation of PPI methods from a patient’s perspective. I am also passionate about co-production of PPI methods with researched communities. I also advocate for diversity and inclusion in mental health research in underserved minority communities.”
Arooj Butt
“I had a heart transplant when I was 11 years old, receiving outstanding pre and post-transplant NHS care. I am a commercial lawyer and have recently become aware of PPI projects. My parents and in-laws are from Pakistani origin and I have often translated for them in medical settings. I see the barriers that people from ethnic minorities, especially the older generation, face as they are often not aware of health research taking place. I am passionate about using my experiences to help others, making participation in health research less taboo, better advertised, and more approachable and inclusive.”
Magdalen Wind-Mozley
“I live in Newbury, and I have two children aged 11 and 14. I’m a school governor, and enthusiastic volunteer at local schools and in my community. I have been lucky enough to have done involvement work around vaccines for 6 years, more recently with the Oxford Biomedical Research Centre, and as a facilitator with the newly formed Diversity in Research Group. I have a background in science, and worked as a forensic scientist (which I genuinely loved; working in both casework and Research & Development).”
Tamanna Miah
“Media Spokesperson, Public Speaker, (ex) Trustee, Facilitator, Writer, Host, award winning-campaigner in Mental Health, Bullying, Racism, Youth and more. I’ve been involved in the youth, community and voluntary sector for over 16yrs, from age 11, volunteering locally, regionally, nationally and on a European level, with many positions in charities, advisory groups and youth councils. I have many years of experience in patient and public involvement (PPI). I want to ensure physical and mental health care and good quality research is more effective and inclusive to make a difference and change as many lives as possible.” For more information about my work: www.tamannamiah.co.uk
Della Dolapo Ogunleye
“When I was diagnosed with breast cancer ten years ago, I was shocked as I thought only white people got cancer. The experience opened my eyes to the lack of awareness of the disease within my community and the need for better representation everywhere. Diversity in research and service design is vital to ensuring treatment and care are tailored to everyone’s needs. I’ve also struggled to find a prothesis to match my skin tone which highlights the need for more inclusion in clinical design. Trust is also a key factor. Within the black community, as well as other minority groups in the UK, there is some suspicion of medical institutions. Including representatives from a wide range of communities at the start of the process and clearly explaining its aims, whether it’s research or service design, will help to build confidence and encourage involvement.”
Hameed Khan
“I am a former user of mental health services and currently a carer for my mother who has physical and mental health conditions. I have worked in different voluntary and community roles in the field of health and social care for over 15 years, including the management of Mental Health Advocacy Services for over 6 years to represent and advocate for people with mental health problems. I have extensive experience of working with non traditionally engaged groups (marginalised communities). I ensure Equality, Diversity and Inclusion is at the heart of everything I do, and I have been a member on various Lived Experience Advisory Groups and Research Advisory Groups for different health and social care research projects. I am privileged and honoured to be offered a place on various Public and Patient Involvement and Engagement groups to influence change and make positive contribution to discussions.”
Group activities
Barriers to involvement
The group is exploring what factors prevent under-served communities from getting involved in research, and is developing an approach to outreach work with them.
Demographic survey design
The group helped design a survey to collect demographic information from PPIE groups across the BRCs. Input from the group has been valuable in designing questions that are not alienating or feel as if they are “just ticking the diversity box”. Once demographic data is collected, we will have a clearer idea of where to focus outreach work.
Video about Polygenic Risk Scores
The group provided feedback on a video produced by the Genomics Theme to explain PRS (Polygenic Risk Scores) to the general public.
Joining a CT scan PPI group
Several members volunteered to be part of a PPI group for multi-centre study looking at using CT scans to analyse the potential cardiac risk for patients.
Literature review on outreach methods
Four members are undertaking a literature review on outreach methods to increase involvement with under-served communities.
You can read a bit more and watch a short video of participants talking about their involvement here.
If you would like to join the group, please contact Rachel or Alexandra:
Rachel.taylor@ouh.nhs.uk Public and Community Involvement, Engagement and Participation Lead, Oxford BRC
Alexandra.almeida@psych.ox.ac.uk PPI Manager, Oxford Health BRC