First published by GCPH 07 March 2022
In this blog, Mohasin Ahmed discusses the team’s work on the Lived Experience Panel component of the Common Health Assets research project.
The value of the voices of those with lived experience (LE) is becoming increasingly recognised in research. Lived experience expertise can bring insights otherwise missed by research teams, which helps ensure higher quality research findings with more relevancy to real-world contexts. As discussed in our previous blog, the Common Health Assets project is looking at how community-led organisations use ‘assets-based approaches’ to improve health and wellbeing. Within the project, we will work with a panel of individuals who are involved with the community organisations in the research to ensure the project is informed by ongoing community expertise.
“Nothing about us, without us” is a slogan taken from the South African disability rights movement. This highlights the importance of putting people at the heart of research which is undertaken in their communities. Participatory research helps to avoid assumptions being made about groups of individuals, as it moves participants away from being ‘subjects’ and allows them to directly influence how the research is carried out and how findings are interpreted.
It recognises the irreplaceable expertise that people have about their own lives and situations and promotes reciprocity in the research process – empowering participants to feel valued and to expand their skills and knowledge. Enabling participants to co-develop and inform the research process gives participants power in their participation and allows for a mutually beneficial relationship between participants and the research team.
The LE Panel will consist of 12 adults who have recently been involved with the study’s community-led organisations from across the UK. It will meet at key stages of the research process to guide and inform the research questions, methods, data analysis and interpretation of results – with space for ongoing involvement and communication between Panel meetings. Participants of the Panel will be directly involved in research activities such as Q-sorting.
The hands-on nature of these participatory methods allows participants to actively engage with the research, placing more value on their expertise. Training opportunities will also be provided to allow participants to build their skills and knowledge around community-based research, which they can share with the organisations that they are involved with. This will promote a two-way learning exchange between the researchers and Panel participants, which will elevate community voices and strengthen researcher-participant relations.
As a new member of the GCPH team, I have experience in how participation and advocacy can manifest at different levels, having facilitated collective advocacy groups for people with lived experience of mental health issues. These groups were participant-led, which gives people more power and control in sharing their views and experiences.
However, I have observed cases where these groups were invited to share their views by external parties in a way that causes disempowerment. For example, when the method of engagement does not suit their needs, or when high expectations are set related to the actions and communications that will follow from consultations.
With these considerations in mind, the LE Panel will aim to avoid this type of disempowerment and strengthen community empowerment by following the Standards for Community Engagement, the UK Standards for Public Involvement and looking to previous examples of successful Patient and Public Involvement and Engagement Panels to inform its development.
Due to ongoing COVID-19 concerns, our first Panel meeting will be held online with the hopes to bring the Panel together to spend time in each of the partnered communities in the near future – allowing participants to connect and learn from each other in their own communities.
Benefits of this type of engagement was demonstrated by the Panel of the Go Well project which brought together residents from the different GoWell study areas across Glasgow and resulted in participants having an increased involvement in local politics and connections to those from other Glasgow communities. The Panel also helped participants gain interpersonal skills which translated into increased capacity for decision-making, effective communication and campaigning.
The Public Engagement handbook has also highlighted important considerations for the development of our LE Panel. This includes ensuring the Panel is a safe environment for views to be shared without fear of judgement and utilising co-facilitation and co-delivery methods to redistribute power within the Panel. We will be flexible in our approach, working with community-led organisation managers to ensure our methods are fit for purpose. We will also be open to unanticipated challenges and foster continuous evaluation to improve facilitation and promote learning throughout the life and work of the Panel.