5 Jul 2022

The event aimed to bring people together to discuss what has changed since the pandemic and highlight some of learning about and through, involvement which may shed a wider light on research in health and social care.

Active Involvement in Research event on Zoom 2022

The event was chaired by Natasha Curran, ARC South London’s implementation and involvement lead and medical director of the Health Innovation Network, alongside Rashmi Kumar, chair of the Involvement Advisory Group and a trustee of Lambeth patients and public participation group.

Rashmi Kumar said: "It’s exciting to see the developments that have happened since our event last year with the new involvement structures in place across the ARC."

The last two years have been very challenging and ARC South London has been busy delivering research associated with Covid but it’s important that we reflect and think about what we have learnt. What barriers have there been to deliver effective meaningful research that will be applicable and can be implemented to address everyday challenges for researchers and for the public.

Rashmi Kumar

Rashmi Kumar

The first presentation was on ‘Empowering better end of life dementia care: patient and public involvement during the Covid-19 pandemic’ by Catherine Evans, professor of palliative care at the Cicely Saunders Institute and Jane Ward, a patient and public involvement (PPI) chair for the Empowering better end of life dementia care (EMBED-Care) programme.

Catherine Evans said: “The aim of the EMBED-Care programme is to empower people with dementia of all ages, carers and staff to identify and act on changing physical, psychosocial and spiritual needs, addressing these across care settings and their transition in care.”

Using the ‘You said, we did’ approach to involvement highlighted the wider application on recommendations to maximise public and community involvement in research.

Jane Ward

Jane Ward

This presentation was followed by a discussion between Beverley Randall, ARC South London executive and board member; associate programme director, Mosaic Clubhouse and Savi Hensman, ARC South London’s involvement coordinator and member of the Service User Research Enterprise. They discussed why and how research matters from communities’ perspective.

 

It’s important that researchers look like us, so that we can build trust and that they use language that is understandable to local people from diverse backgrounds.

Beverley Randall

Beverley Randall

As researchers it’s important that we work with community organisations and think about our research being outside in rather than inside out.

Dr Josephine Ocloo, ARC South London’s equity, diversity and inclusion lead

Following a Q&A the attendees went into breakout groups to discuss two questions:

1. From your experience during the pandemic, what key things have you learnt which might strengthen health and care research, and involvement?

2. From this learning, what are the implications for involvement in health and care research, and more generally for ARC South London’s research moving forwards?

Feedback from the event was very positive with lots of suggestions for future discussion topics.

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