PPIEP at Oxford Health BRC

Oxford Health BRC contributed to the Community Conversations programme, a Health Innovation Oxford & Thames Valley (HIOTV) initiative that brings underrepresented voices into the heart of health research and service design.

The programme uses co-production and participatory methods to engage with communities often excluded from healthcare planning. Through webinars and qualitative research, it explores the lived experiences of groups such as Gypsy, Roma and Traveller communities, people with learning disabilities, sensory impairments, and LGBTQ+ individuals.

In March 2025, OH BRC supported a webinar focused on Gypsy, Roma and Traveller communities. This session contributed to a growing body of work informing the Thames Valley and Surrey Secure Data Environment (TVS SDE), helping ensure that future data-driven innovations are inclusive, trusted, and community-informed.

The Community Conversations playlist, including the OH BRC-supported webinar, is available on HIOTV’s YouTube channel. These sessions offer valuable insights into how different communities perceive health data and how researchers can build more inclusive systems.

Jointly hosted by the Oxford and Oxford Health Biomedical Research Centres (BRCs) and facilitated by the external organisation Open Edge.

The March 2024 workshop evolved from a conversation between a researcher and the public contributors from the Diversity in Research(DIR)PPIEP group. This group, jointly run by the PPIEP teams from both Oxford and Oxford Health BRCs, focuses on inclusion and increasing diversity in health-related research. Following this conversation, a survey was sent out to BRC researchers, gathering their thoughts and needs about diversity and inclusion. This ethnicity inclusion workshop was the result, and it was co-produced with the DIR Group.

Objectives were to create an increased awareness and understanding of why ethnicity inclusion is important for health research and outcomes. Attendees learnt about the INCLUDE framework and other ethnicity inclusion resources. In addition, they practiced how to apply this guidance to research projects and other activities. Finally, it was hoped that future training and support needs would be identified, through gathering evaluation and feedback.

Watch the video below “Increasing ethnic diversity in health research” which explains the INCLUDE framework.

How many people attended? Who was the audience?

Approximately 40 people attended, 31 of whom completed feedback forms. There was a mix of PPIEP staff members, from the BRCs and from the university, researchers, and public contributors from the DIR PPIE group.

What did they learn?

The day started with a guided self-reflection, allowing attendees to understand their own ethnicities and identities and whether they belonged in a marginalized group or centred group. Those who were centred or struggled to identify their ethnic identity were asked to figuratively step back. Those attendees who were marginalised were asked to step forward. This was a clear and impactful way to start the day.

The first session was led by Professor Shaun Treweek, from the University of Aberdeen and Trial Forge. The clear message from Professor Treweek was “Research design is about making choices, once made, there may be no way back. If bad choices are made it bakes in inequality.” After this, the workshop heard from Dr Shoba Dawson, from the Trial Forge Research Centre in Sheffield, about practical approaches to ethnicity inclusion in research. Dr Dawson’s session focused on why and how inclusivity needs to be a whole systems approach, in terms of people and stages in the research cycle. She also spoke about EDI and Intersectionality, about power and privilege and about equity in research

Attendees reported a substantial increase in understanding, knowledge, and confidence about ethnicity inclusion. They learnt about ethnicity inclusion tools and resources already in existence and how to apply these tools. They had newfound confidence in challenging study eligibility criteria. Finally, a deeper understanding of various concepts, such as Intersectionality, EDI vs PPI, “ethnicity” vs. “race” and why ethnicity inclusion is important.

What was the feedback about the event?

Attendees found it inspiring to be in a group of link-minded people, dedicated to EDI. Attendees appreciated the organisation, the atmosphere, the presentations, the discussion and co-working session and the opportunity to network. Suggestions for future events would be to have more time to delve deeper into the concepts and to digest the information. Increased diversity, particularly in relation to the lack of men, was hoped for, in the future. All attendees who submitted feedback forms agreed that the day had met their expectations. Feedback shared has already been collated into a list of potential future learning opportunities and workshops, to increase confidence and knowledge around ethnic inclusion and more widely about inclusivity in research.

“It was an excellent workshop – great speakers and great facilitation. Good time-scale, enough time to discuss. I love coming away from a workshop with concrete ideas and practical plans for application and INCLUDE.”

“Informative but also informal, friendly and collaborative. Excellent speakers.”

“I have learned so much just by talking to people (during the registration period).”

In 2022, Dr Polly Waite, Associate Professor of Clinical Psychology at the University of Oxford was awarded a 12-month NIHR Development and Skills Enhancement Award. This award helped increase capacity to deliver randomised controlled trials in more than one location. These trials will test psychological treatments for adolescent anxiety disorders, particularly panic disorders. One day, routine services will hopefully offer these new treatments.

An important part of this award is to involve young people and clinicians in the research. This involvement is funded and supported by the Oxford Health BRC.

Dr Waite’s team needed to set up a UK-wide group, made up of young people with lived experience of panic attacks. The team advertised for group members via social media. The group has held two online meetings, where researchers consulted the group members about issues. A recent example was the use of and access to digital interventions as treatments. In general, the young people in the group liked this idea. However they said that access to therapist support was also needed, and they were worried about their privacy. They want to be able to use their phones to access the treatment and to have downloadable content. The researchers are now using this feedback to make these treatments even more accessible and effective.

Dr Waite’s team also looked at evaluating new therapies and training clinicians to deliver them. They spoke to training providers, service leads, and clinicians working in Child and Adolescent Mental Health Services (CAMHS). The feedback highlighted that it would be helpful to have concrete examples of how a clinician might deliver specific treatment components, within treatment manuals and materials.

The team has now added these examples to the Oxcadat Resources , a resources bank for clinicians treating patients with a broad range of mental health conditions. In addition, training workshops are  delivered to both trainee and qualified therapists.

The NIHR funded ORIGIN study has been funded to allow 16-24 year olds, particularly from underrepresented groups, to co-design an online arts and culture intervention aimed at reducing anxiety and depression.

The ORIGIN study, run by the Oxford Health BRC’s Mental Health in Development Theme, is being led by Dr Rebecca Syed Sheriff and Professor Kam Bhui, Co-Chief Investigator EDI Academic Lead, and involves former Oxford Health BRC Director, Professor John Geddes as co-applicant.

The study will be an active collaboration of 1,500 young people with NHS Trusts, UK universities, museums and charities. Importantly, and emphasising the BRC’s EDI commitment. The study participants will include underrepresented autistic and LGBTQI+ young people, ethnic minorities, and those on NHS waiting lists for mental health support, including in some of the most deprived areas of the UK such as Cornwall, Liverpool, Sheffield and Blackpool. Active inclusion of these underrepresented individuals will ensure a relevant and engaging intervention is produced.

The study arose from a pilot project, O-ACE that included diverse young people from its inception. One of the grant holders of the ORIGIN study is a public co-applicant with lived experience of being autistic and having mental health issues, and with connections to Bernardo’s and the Youth Futures Foundation.

Patients and Research Group (PAR)

The BRC’s Patients and Research Group (PAR) brings together patients, carers and members of the public who are interested in being involved in mental health and dementia research.

Regular PPIEP Research Meetings are organised where you can present your project to a panel of PAR members.

Regular emails are sent to the group sharing current PPIEP opportunities.

The Dementia Advisory Group plays a vital role in shaping research within the Oxford Health BRC Dementia theme. Comprised of up to 12 in-person members, with additional contributors supporting online, the group brings together individuals with first-hand experience of dementia whether personally, as a family member, carer, friend, or through professional roles.

Evolving organically from the Oxford Health BRC Advisory Group established over six years ago, the Dementia Advisory Group has been active under its current name since around 2021. It is sometimes referred to as the Brain Health Clinic Advisory Group, though both names reflect the same group and purpose.

Members collaborate closely with researchers to ensure that dementia research is informed by lived experience. This includes quarterly in-person meetings and ad hoc online contributions. Activities range from shaping study design and reviewing funding applications to improving the accessibility of research materials. A key focus is ensuring that services such as the Oxford Health BRC Brain Health Clinic, are designed around the needs and preferences of those who use them.

Contributors are reimbursed for their time and expertise. To express interest in joining or to learn more, please email: jasmine.blane@psych.ox.ac.uk

ENGAGE is a group of research participants from the Oxford Health Clinical Research Facility (OH CRF). They provide PPI input on your research including how to create clear information for potential research participants. They share their perspective to help you consider how to design your study and identify potential issues. ENGAGE meets every two months.

The Oxford Health BRC is committed to ensuring that young people have a voice in mental health research and that we listen to a diverse representation of young people’s views to build an evidence base that is acceptable and authentic to the lives of young people.

The NeurOx YPAG is a group of young people (between 14 and 18 years old) who work with the Neuroscience, Ethics and Society (NEUROSEC) team to help develop methods for working with young people to better understand their views.

The Early Psychosis Research Group has set up a patient and public involvement group to provide PPI expertise across all of their group’s studies. It involves a group comprising young people with psychosis, some people who have recovered from psychosis, and their carers.