Broadening Engagement and Awareness of Chronic Pain and of Public Involvement

PI Title: Dr Sarah Harrisson 

Lead member: Keele University 

Chronic pain (lasting 3 months or longer) is associated with significant distress and disability. People living with chronic pain often find participating fully in family life, work, and the wider community difficult; and they are under[1]represented in research and PI activities.

We want to co-design and evaluate a new patient-centred primary care-based intervention to improve the lives of people with chronic pain. To do so, we need ways to broaden awareness and of research and PI in this population. In our previous SPCR-funded project, a group of 5 public contributors including SB took on the Research Ambassador role (conduits between people in their communities and researchers). They asked people living with chronic pain what research mattered to them and we learned that they would value a film featuring people living with chronic pain showing “behind the scenes” of PI.

PI and research are often seen as mysterious and potentially inaccessible to under-represented groups. Film offers a powerful, accessible medium that allows people with lived experience to convey their message directly in their own words.

This proposed project, aims to:

1. co-produce a series of short films to capture people’s experiences of living with chronic pain and the benefits of engaging in PI and research.

2. broaden awareness of and encourage engagement in PI activities and research amongst people living with chronic pain from under-served communities.

We will use a participatory film-making approach to capture people’s experiences of chronic pain and the benefits of engaging in PI and research. Participatory filmmaking will allow us to work in a person-centred way; to be responsive and flexible to the needs of those involved.

We will work alongside the contributors (the Research Ambassadors) from our previous project who were key to developing the concept of this project. At key points in the timeline (see figure), we will meet as a group in a series of iterative, online meetings. We will keep in touch using our existing WhatsApp group. The Research Ambassadors will meet to steer the project:

1)      prior to filming - to design and refine the planned content, style of the film and points for reflection

2)      at the start of editing – to review footage and refine the overarching narrative

3)      on completion of editing - to review the final cut and discuss plans for dissemination

Research Ambassadors will invite up to 4 people living in Black African, Asian and Caribbean heritage communities to take part in the project. All contributors will be invited and supported to take part in filming. It is anticipated that not all contributors will directly engage in the entirety of the film-making process. Research Ambassadors will seek the views and perspectives of the contributors from their communities. Aligned with UK standards for PI, all contributors will be reimbursed for their time.

Expected outputs

• A series of short films (1-3 minutes) suitable for social media

• Inclusive materials to support others to make best use of the films

• Accessible project report

• Basis for engaging PI to inform future research

Amount awarded: £8,000