Trials of the Mind feat. Sasha’s Trial, 2015

 

 

Contents

 

How Do You Make Clinical Research Engaging?
Sasha’s Trial
Patient and Public Engagement and Involvement
Press
Responses to Trials of the Mind
From Stage to Screen
Sasha’s Trial – Film (32 min)
Responses to Sasha’s Trial – Film

 

 

How Do You Make Clinical Research Engaging?

 

In 2015, we partnered with Clinical Research Network Greater Manchester (CRNGM), part of the National Institute for Health Research’s, to support their research project:

To improve public understanding of clinical research on dementia and mental illness, and encourage people to take part in health studies.

We began by working with CRNGM to really understand their project’s objective, which we defined as engaging the public around 18 key points, including:

  • Why do we carry out clinical research?
  • Dispelling the myths about clinical trials.
  • Acknowledging there can be risks associated with clinical trials.
  • Being proud of the benefits associated with clinical trials.
  • Making it clear that saying yes to hearing more about research trials, doesn’t obligate you to take part, or take away any control you have over your involvement in research trials.
  • Making it known that you have the right to ask to be part of a clinical trial.

In order to achieve this objective we created the applied narrative Sasha’s Trial – a story designed to be strategically integrated into CRNGM patient and public engagement and involvement events.

 

 

Sasha’s Trial

 

It was crucial we delivered the 18 key points in a way that the public could relate to. To do this we created a narrative that revolved around two characters we amalgamated from real-life accounts: 16-year old Sasha, and her Grandad.

Sasha struggles with anxiety and her Grandad is living with dementia. Even so, they share a touching closeness, full of patience and loving despite the differences in their ages and outlooks. Together they explore the challenges of their medical conditions and the subject of clinical trials. As Grandad’s health deteriorates, however, and Sasha struggles to make sense of this, her confusions threaten to overwhelm her. Faced with decisions she now must make alone, what hopes can Sasha’s future hold?

 

 

Patient and Public Engagement and Involvement

 

CRNGM held their 2015 patient and public engagement and involvement day at the Manchester Museum. Here we delivered Sasha’s Trial in the form of an integrated stage performance. For this we designed the wraparound workshop Trials of the Mind which partitioned the performance into four scenes – Summer, Autumn, Winter and Spring. This not only allowed CRNGM to hold facilitated discussions between each scene, but also gave the public some space and time to process both the emotional and practical information they were being presented with.

 

SUMMER

AUTUMN

WINTER

SPRING

 

 

Press

 

‘Trials of the Mind: An Interactive Look at Dementia and Mental Health Research’ (Simon Bland, Journalist)

Thought provoking and at times shockingly raw and powerful, the story of Sasha and her Grandad brought these very real issues to life right before the, often teary, eyes of the viewers.
The four scenes (or seasons, as they were presented to viewers) showed how the relationship between the pair changed as their respective conditions took hold. We saw how Sasha’s anxiety and tendency to self harm was managed by medication, while her misconceptions about clinical trials were corrected when her Grandad revealed that he had been using them to curb his encroaching Alzheimer’s symptoms. Each segment was succinct and hard hitting, setting the tone perfectly for the group discussions that followed.

Each scene represented a different stage of dementia and/or mental health difficulty, and the immediate and long-term effects clinical trials can have on their progression. Sandwiched in between each scene were discussion sessions moderated by healthcare professionals, where viewers could dissect what they had seen and ask questions in a supportive and informed environment.

The aim of the day was to demystify clinical trial initiatives and dispel the myths surrounding dementia and mental health research.
The ups and downs of Sasha’s Trial presented new angles through which to view the treatment of dementia and mental health problems, spurring a great many insightful questions from audience members. Once the day’s performance was over, representatives of Clinical Research Network Greater Manchester invited attendees to participate in an overall Q&A, where the group could voice concerns, quiz experts on the truth behind clinical trial misconceptions and most importantly, get informed and factual answers. It was a fresh approach and looking around the room, one that clearly worked well.

The real gift offered by Trials of the Mind was its ability to humanise medical research.
The day was inspirational and hit home a single overriding message: Understanding and investing in research and not being afraid of it, is the key to finding better results. Dementia and mental health issues may remain taboo topics in some circles, but Trials of the Mind showed us that they really don’t have to be.

 

 

Responses to Trials of the Mind

 

Member of the Public
On the power of Applied Narrative.

Service-user Researcher
On the power of Applied Narrative.

Research Nurse
Highlighting the need for further dissemination.

Clinical Researcher
On the value of collaboration in overcoming negative perceptions.

Mental Health Theme Lead (CRNGM)
On taking the message into schools.

Research Delivery Manager (CRNGM)
On the aims of CRNGM.

 

 

From Stage to Screen

 

In order to support CRNGM’s intention to hold further events in care homes and secondary schools across Greater Manchester, we also delivered the the Sasha’s Trial narrative in the form of a film. Whilst this required some changes to the scripting, it made excellent use of the performers whilst we had them, and provided CRNGM with a lasting resource.

 

 

 

Sasha’s Trial – Film (32 min)

 

 

 

Responses to Sasha’s Trial – Film

 

The film was even more powerful than the theatre performance. Obviously it’s different; close-ups of people, and being able to read the emotions on their faces in a way that you can’t really in the theatre. It was powerful. I think it moved everyone in the audience to tears. I want everybody to see it. Many people don’t really understand what dementia is like. This is as powerful a representation of dementia as I’ve seen.

I loved the positive end. The problem is that much of what people read about dementia or see about dementia is bleak, and we need to show those positive sides as well; that even at the later part of the story it’s not the end. There can still be new adventures, there can still be explorations. The way you leave the film feeling tremendously moved, it’s very sad, but there’s a little bit of optimism in there.

Alan Miles, Dementia activist and writer, Ctrl+Alz+Shift

 

It was superb. The film took something quite abstract like a clinical trial, and made it very human, very approachable. It was beautifully done. Very sensitive. The script was very good. It captured dementia. It captured the emotional problems of the young girl; distress, confusion. Initially I thought: What was the point of the clinical trial if he’s deteriorating anyway? But then they bought it back around to the iPad, which he had used in the trial. That was very powerful and he obviously did get some benefit from it, even in his late stage.

The other powerful message it gives is that clinical trials aren’t just about drugs and guinea pigs, things like that, because both of their trials had nothing to do with medication. One was family therapy, so obviously a complex intervention, the other was around the iPad. So I think that was another powerful, but subtly done message.

Prof Iracema Leroi, Professor of Psychiatry/Horary Consultant, Manchester Institute for Collaborative Research on Ageing