Sunday, 24 April 2016

Learning for Involvement

Many of us who have become actively involved with health related research dislike the word 'training' as it seems to imply that we need to be taught something and moulded into behaving in a certain manner.

Learning (at our own pace, in our own time, at our own leisure in a manner that allows us to choose what we want to learn when we need to know) seems a much better description.

I am speaking, of course about Informing Healthcare Through Clinical Research and am going to be blogging here and tweeting @DerekCStewart with #IHTCR in the weeks running up to 6th June and during the weeks of the course.

This is a transformative, free, online course that means that I can find out about Clinical Research, think about many of the issues, understand some of the challenges and build my knowledge about what needs to happen to improve our health and wellbeing.

The first outing of the course had over 4000 people taking an active part with more than half staying with the course. Many members of the public joined in as well as people from throughout the world.

It is only fair to point out that I appear in the course, helped @kareninns1 to get the views of some patients and we both work at the National Institute for Health Research Clinical Research Network. I am therefore biased yet thoroughly enthusiastic.I have also written previously in this blog about - It's a MOOC, take a Look.

For years, patients and the public, who become actively involved had to wait for any courses and other meetings to make sense of clinical research. 

The major shift here is that of control and autonomy - where we are given more choice and power to find out for ourselves. This is not training - it is learning.

I much prefer the term learning and am grateful to my colleague @emma_lowe for pointing me in the direction of Jane Hart. This approach to Modern Workforce Learning applies even more for the public trying to learn in research. 

Our approach has been to get people together to talk about research through the Building Research Partnerships programme which acts as an introductory session for the public to meet people working in research.  There is a nice video clip of BRP in action from NWC CRN and the course notes are now part of CRN’s National Learning Resources

This takes me very nicely to the excellent and extensive campaign #whywedoresearch and the TWEETFEST which took place during the week beginning Mon 16th May 2016. 

On 17th May 1230-1330 @kareninns1 and @DerekCStewart hosted a Tweetchat on the very topic of Learning and supporting involvement in research with #myresearchlearning

You can also find out more about the Patient Research Ambassadors Initiative (PRAI) with @SimonRStones in the evening between 2000-2100hrs. Find out more about PRAI on BrightTalk TV

All of this excitement led up to International Clinical Trials Day and the OKtoASK Facebook discussion Friday 20th May and...

     ...the relaunch of the MOOC 

           Improving Healthcare Through Clinical Research.

Look out for more on learning in my next post and you might want to have a look at a recent webinar on the challenges and opportunities of involving the public that @AntimonyWray and I gave for research trainees.

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?