The theme of AIRD 2020 was: “What we learnt this year about, and through, involvement - and making sure local voices shape future research and practice”. The aim was to draw on the knowledge, skills, perspectives and experiences of local people and communities, especially in relation to the Covid-19 pandemic, and to develop ideas for strengthening public involvement at the ARC.    

The event was chaired by Dr Natasha Curran, medical director at the Health Innovation Network, who co-leads the ARC’s implementation and engagement activities. 

The evening began with two presentations. The first was from Dr Josephine Ocloo, the ARC’s diversity and inclusion lead, who presented on the outcomes of an ARC community Zoom event held in April. The aim of the event was to rapidly gather evidence on the unequal impact of Covid-19 on people with protected characteristics. This evidence was then summarised and submitted to the UK parliament to inform policy.   

The second presentation was by ARC researcher Lisa Brighton and Rashmi Kumar, a patient and public contributor, both from the ARC’s palliative and end of life care team. They described a rapid online consultation of people affected by serious illness during the Covid-19 pandemic designed to capture experiences, concerns, and priorities for future palliative and end of life care research. 

In the discussion and Q&A that followed, several people highlighted the need for engagement events such as these to lead to specific outcomes and actions. Others reflected on the importance of researchers being genuinely embedded in local communities in order to build trust and engagement. 

After a short break, the audience was split into smaller groups. Each group was invited to come up with practical suggestions for strengthening involvement by diverse service users, carers and members of public throughout the ARC’s work. Suggestions fed back to the wider group included:     

  • Involving more diverse groups with the ARC’s research
  • Setting up a citizens’ panel to feed into research proposals and plans
  • An increased focus on participatory research, including offering specialist training
  • Being clear about how research benefits local people and communities
  • Working closely with local leaders, influencers, role models, community and social media groups.

The organisation of AIRD 2020 was led by Savi Hensman, the ARC’s patient and public involvement coordinator.

I’d like to thank everybody who attended and contributed. We will be exploring the ideas and suggestions gathered in more depth over the next few months. The aim is to inform the ARC’s patient and public involvement and engagement strategy and structures, and ensure that local voices shape the ARC’s work.

Savi Hensman

Savi Hensman, the ARC’s patient and public involvement coordinator