Sunday 24 April 2016

A Safe Space - some further thoughts

This challenging question was posed by Ziggy's Wish and almost instantly invites thoughtful consideration. In one respect I make a choice to attend so I carry a certain responsibility but I have most likely bought a ticket so do I have a right to a duty of care from the organisers?

@Delia_Muir and I (@DerekCStewart) followers of @ziggyswish were invited to write responses. You can read the whole piece here

Delia and I are advocates of public involvement in health related research and have a shared background in drama.

Ziggy’s Wish use the arts as a powerful and effective means of ‘engagement’ in a way which delves beyond the surface to help make statements about people’s lives which can have meaningful impact. This means that they are at the cutting edge of exploring people feelings as well as their views.

Health research and drama, it can be argued, set out to ask questions, invite involvement and participation which it is hoped will answer questions that improve people's health and wellbeing.

@RachelMoorhouse, Creative Producer with Art with Heart asks... 

  • Do our voices come from a place of authenticity and authority, through personal or shared experience? 
  • Do we feel confident that we can respond to difficult questions or conversations that the work may provoke?

The first question lies at the heart of meaningful patient involvement. The authenticity and authority of being affected through personal illness or that of a close friend, relative or colleague. As we become involved in helping researchers to make research that is more relevant and answers appropriate questions, can we feel confident when we challenge and criticise professionals in their field.

Rachel equally speaks to all clinical researchers when she recommends...

  • Speak with organisations and individuals with knowledge and experience, those who are proficient in dealing with the complexities of the subject. Ask their advice, and be honest about your shortcomings. Point your audiences to these organisations in promotional material, so that they can seek support if required.

The word 'audiences' can be simply translated into research participants especially if our goal is a better relationship with the public.

Delia Muir reminds us of the ethical issues for research - 

  • You could look at this as an ethical question. If I wanted to invite vulnerable people to take part in a research project, I would have my work scrutinised by an ethical committee and would have to justify my approach. 
Matthew Green Associate Professor of Modern English Literature, University of Nottingham
says, the same article...

  • seems clear that the responsibility is and should be a shared one

Responsibility for research, given that much of it is funded and supported by public funds must be shared.

Thank you Ziggy's Wish, Delia Muir, Rachel Moorhouse and Matthew Green for the opportunity to join in a discussion with you. Thank you Hannah Ellis and Ravi Thornton for the invitation.

Final Note

Before my cancer I was a drama teacher working mainly with young people excluded from schools and for two years across different  special schools in Nottinghamshire. After cancer I worked for a number of years with theatre companies like Interplay, Full Body & The Voice, Graeae and Roundabout producing resource packs which contained objects and elements from the performance.

Yet, the very nature of the arts and theatre is precisely to evoke and at times provoke a ‘feeling’ response. This is especially true of drama, where through the safety of a fiction we can explore issues and help make meaning and sense of the world. The live and immediate places us in the heart of the action.

It is what makes drama in education an effective learning medium and separates it from other subjects. Where else can we try things out, move forward and back in time, explore what is being said alongside what is being thought and felt. When effectively facilitated the action takes place ‘as if’ it is happening now, at this moment in time with us as participants which allows us examine situations at a very personal level. The fact that it is a ‘fiction’ and that the people are in-role provides its own barrier of security.

Equally, we are searching for answers in clinical research and the safety of ethics committees, robust processes and good questions are vital components.

So, should we in in clinical research be using the arts more to engage, involve and have a meaningful relationship with the public?

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