Around 35 people took part in the event. Bringing together ARC South London patient, service user, carer and public contributors, research staff and key partners, this focused on ‘Building ongoing communication throughout the life cycle of research’.

Sometimes, even when researchers are committed to involvement, the people involved do not always have a clear idea of how the research is progressing and what difference their views and experiences have made. The event offered an opportunity to look at how to tackle this challenge.

Rashmi Kumar, chair of the Involvement Advisory Group and a public member of the ARC’s Executive and Board, welcomed everyone attending. Presentations followed.

Mary Newburn, the patient and public involvement and engagement lead for the ARC’s maternity and perinatal mental health theme, spoke on ‘Building ongoing communication throughout the lifecycle of research – reflections of a service user PPIE Lead and a service user researcher.’ She outlined how people could be involved at different levels; from consultation through to co-production and user-controlled research, and ways of keeping track of, and acknowledging, how much difference input from contributors; and how involvement had been strengthened in the ARC. 

Achieving public and community involvement throughout the life of research is a matter of relationships, resources, reciprocity and reflection.

Mary Newburn, maternity and perinatal mental health, public involvement lead

Mary Newburn, ARC South London maternity and perinatal mental health theme theme

Josephine Ocloo, the ARC South London equity, diversity and inclusion lead, a senior researcher at King’s College London, described her longstanding interest in participatory research and the impact of personal experience which led her to advocate for harmed patients. To her, activist scholarship was “concerned with the rights and lives of the oppressed and with marginalised forms of knowledge. Among its fundamental aims are to challenge power relations that lead to social, political and economic inequalities and to promote justice and equality.” She described a ​ community peer research methods in which members of the community being researched took part in designing, conducting, analysing and disseminating the research.

Activist scholarship is concerned with the rights and lives of the oppressed and with marginalised forms of knowledge. Among its fundamental aims are to challenge power relations that lead to social, political and economic inequalities and to promote justice and equality.

Dr Josephine Ocloo

Josephine Ocloo

Both speakers made the point that this was not just about methods but sharing power. People attending then met informally in small groups to discuss what practical measures might strengthen collaboration and communication in research involvement, drawing on points made by the speakers and their own experience. There was also a chance to ask questions and make comments in the larger group. Feedback on both presentations was very positive overall.

Watch the presentations from the event