Published: 02 July 2021
Public contributors and researchers from the mental health theme at the NIHR Greater Manchester Patient Safety Translational Research Centre share some strategies that enabled them to work collaboratively with individuals from marginalised communities to co-design research.
Greater diversity in patient and public involvement and engagement (PPIE) is essential to ensure research is able to make a tangible difference to the people it’s designed to help. The COVID-19 pandemic has highlighted widespread health inequalities in society. Nurturing a ‘culture of equality’ throughout PPIE in research benefits both researchers and public contributors working to improve patient safety in health and social care.
Set up in 2018, the PPIE group for the mental health theme at the NIHR Greater Manchester Patient Safety Translational Research Centre includes 21 members from a wide range of backgrounds and communities. All members have lived experience of self-harm or suicidality and experiences of mental health services either as users or carers.
Creating a patient group
When recruiting public contributors, a flexible approach and wide reach is essential. Clear wording and visual images can encourage engagement. It’s also helpful to be as transparent as possible around what’s involved in terms of time commitment and payment.
It’s important to engage with a wealth of user groups. We’ve met our contributors through a variety of ways which include mental health poetry events, university public engagement events, social media and working with local services.
Establishing trust for PPIE takes time, commitment, loyalty, honesty, generosity, acceptance and acknowledgment. Strong relationships enable people to feel confident enough to contribute where they feel their voice is heard. We recognise that everyone brings their own skills and experiences and create opportunities for individual personal development.
Language and culture
From our experience, using terms like ‘hard to reach’ and 'Black, Asian and Minority Ethnic (BAME)’ can disengage some people. It is helpful to name the specific community you are working with instead of using generic terms, as this will clearly indicate the barriers that particular communities face and assist with cultural competency knowledge and training.
In addition, we believe, recognising cultural variations in communication, translation, and important religious and non-religious days helps to build trust and boosts engagement.
Like everyone else, we relied upon video conferencing during the pandemic to enable us to continue to work together, and this had implications for diversity and inclusivity. All of us, public contributors and researchers, spoke at virtual conferences. Some of our group find travelling challenging due to a number of reasons, including mobility issues, geographic location and social anxiety. Video conferencing helped to ensure more of us were able to be included as some barriers were removed.
However, we’ve experienced various challenges when using video conferencing for PPIE, including digital access issues and sensory overload. It’s important to be mindful that some members may feel silenced or lost during meetings, especially when group dynamics shift. Unwritten rules of communication can be harder to understand online. Communication preferences differ between people, and we don’t have the usual coffee and cake to help put people at ease during virtual meetings.
Reflecting on PPIE processes and practice can help prompt insights and initiate new directions. Our group’s feedback mechanism was initially a safety feature, but it has developed into a way to share our reflections outside of meetings. This shared learning helps us to continually develop and improve our ways of working.
Our experiences have taught us many things, including these three key take-home messages:
- Invest in building authentic relationships.
- Recognise individual needs – although some people share a common factor (such as attending mental health services), everyone has unique experiences and skills. Continually adapt your approaches to recognise contributors’ own specific circumstances, wellbeing, needs and preferences.
- Embrace change – continually evolve your approach as you learn from each other.
There are no shortcuts to increasing engagement with seldom heard communities – you need time and resources; and a mix of different methods, online and offline
Dan Stears has more than 20 years' experience as a mental health service user, is a leader of a Greater Manchester service user organisation and is a passionate advocate for mental health and LGBTQ+ rights.
Javed Rehman has lived experience as a mental health service user and is dedicated in his pursuit for cultural equality, diversity and inclusion in mental health services and research.
Dr Louise Gorman, Research Associate, NIHR Greater Manchester Patient Safety Translational Research Centre (GM PSTRC)
Professor Roger Webb, Professor in Mental Health Epidemiology, GM PSTRC
Professor Nav Kapur, Theme Lead, GM PSTRC
Dr Leah Quinlivan, Research Fellow, NIHR Greater Manchester Patient Safety Translational Research Centre