SPCR Public Involvement and Engagement Fund

• Lead: Stephanie Gillibrand, University of Manchester

This community output project is building on two current projects on community experiences and responses to the COVID-19 pandemic. 

We seek to utilise these themes generated from the research to form the basis of material for a co-created booklet, a ‘zine’.  

 Alongside this zine, we also plan to do an audio-visual piece. We will work with local performing arts charity, Young Identity, and public contributors to collectively write a piece of spoken word/poetry based on the insights from the research and taking inspiration from the stories from the ‘zine’. This will be done via a poetry writing workshop hosted by Young Identity, with diverse local community groups and young people. We will record the final piece as an audio/visual piece, to be used as both a dissemination and wider engagement tool whereby a poet will perform the piece at a launch event of the creative communities workstream. This poetry piece will give local communities the opportunity to raise awareness of public health issues that are important to them in the wake of the covid-19 pandemic, to lay-out their priorities for their own healthcare needs and priorities going forward.

 We will do a launch event at a local community arts-venue, which will seek to bring together local decision makers, including NHS system representatives, local GPs and primary care staff, and  researchers to a) identify ways in which primary care and the wider health system can support local communities in light of exacerbated health inequalities after the covid-19 pandemic b) identify ways in which local communities can have their health needs met by primary care c) identify future research priorities in this area d)research additional under-served groups

 This project aims to:

• Develop a fora for feeding back public health priorities, relevant to primary care and other prevention-based healthcare services such as screenings and vaccination programmes, to reduce health inequalities

• Generate findings relevant to primary care to inform future research priorities for primary care service delivery considering the covid-recovery support programmes relevant to primary care, 

• Test creative approaches for reaching additional under-served communities from areas of high deprivation

• Support relationships and outreach networks between local communities, the third sector and primary care infrastructure, to support the overall NHS goal of helping to work more closely with voluntary and community groups to improve the health of under-served communities.

• Lead: Alice Faux-Nightingale, Keele University

The SPLaT-19 project is currently exploring life with long-Covid in children and young people (CYP) between 8 and 17 years. SPLaTooN aims to share these research findings with CYP in an accessible and engaging way. To do this we will work with CYP in PPIE groups and CYP with lived experience of long-Covid, to coproduce resources providing information and advice to CYP about living with long-Covid.

 Over a four-month period we will meet with CYP PPIE members to explore:

• perceptions of health information, particularly those relating to long-Covid, 

• specific topics of interest about long-Covid, including reactions on the SPLaT-19 findings, and perceptions of access or engagement with health information,

• views of the best formats, methods and platforms to share long-covid health information,

• And how information can be shared in an accessible way.

We will then develop storyboards and mock designs for resources and use these draft materials to underpin a discussion around diversity, inclusivity, and accessibility of resources with the PPIE group. This will ensure we develop outputs that are accessible and relevant to the diverse population of CYP living with long-covid in the UK. 

Our PPIE group will include a range of ages, and we will aim to build in diversity including CYP living with disability and neurodiversity. However, it may not include many CYP who are experiencing long-covid, so we will also work with CYP who took part in the SPLaT-19 interviews and diary exercises to explore their thoughts about our storyboards and/or designs for media to ensure that the proposed content accurately and fairly reflects their experiences. We will arrange for the final content from these sessions to be produced, including CYP and students in this process as much as possible. 

The format and content of the resource will be shaped by the PPIE group and so, at this time, is not fully known. However from previous work we envision the final resources to include a series of short videos, produced in the style of current social media content, which will explore a range of topics about the experiences of CYP with long-Covid and provide advice for people with the condition. These can then be shared on social media platforms familiar to CYP e.g. TikTok. Other graphic media materials such as posters, comics, or leaflets may be produced to be distributed in key locations such as GP surgeries to maximise impact PPIE members and CYP participants. 

• Lead: Dr Sarah Harrisson, Keele University

Chronic high impact pain (CHIP) is pain (lasting 3 months or longer) that is associated with significant distress or disability. The stories of people living with CHIP are complex and diverse. Those living with CHIP often find participating fully in family life, work, and the wider community difficult.

A future programme of research, aiming to improve lives for people with CHIP, is planned to co-design and evaluate a new patient-centred primary care-based intervention for people with CHIP.

This proposed project is the foundation of further work which will allow us to have meaningful PPIE with people with CHIP. However, engaging and involving this population in PPIE activities may be difficult.

The aims of this project are to:

•  Co-produce a PPIE strategy with people with lived experience of CHIP and
• Plan the co-development of the new intervention.

Focusing on co-production will offer potential to be more creative and innovative in developing the PPIE strategy. Optimised for people with CHIP, the PPIE strategy will help to improve engagement, relevance and acceptability of the new intervention. Within the challenging context of CHIP no single approach to PPIE will suit all. To be responsive and flexible to the needs of people with CHIP, informed by our current PPIE work, we will use person-centred approaches to identify, engage and involve up to 12 contributors. This will include people living with CHIP and the people they connect with day-to-day, e.g. partners, family and friends.

Our current PPIE work will set the agenda for the format of the PPIE activities in this proposed project. We anticipate that we will adopt an inclusive and accessible range of activities using innovative approaches, that may include technology (e.g. PhotoVoice, audio/video messaging). PPIE activities will decide and plan an approach for ongoing and meaningful PPIE, co-producing a ‘toolbox’ of resources for use in the future research programme. Potential elements of the future intervention will also begin to be explored.

To evaluate impact, a process of sharing, collating and integrating personal reflections will be embedded within the project. Our reflections will foster shared learning, help build trust and ensure that contributors’ participation is meaningful and rewarding.

Expected outputs

• An innovative framework (a refined “toolbox”) for ongoing and meaningful public contribution optimised for people with CHIP
• Development of a fellowship application (focused on the new programme of research)
• Dissemination in lay/academic publications and presentations, including social media

• Lead: Dr Jessica Watson, University of Bristol

Blood tests are commonly used in general practice. Understanding blood tests is important for patients to help them to become partners in their care and manage their health. It is also important for patient safety; if abnormal tests are not followed up by this could lead to a delay in diagnosis. 

Our research has shown that patients do not always know what tests they have had done and why.2 3 Patients can find it difficult to get their test results and are not always told what their results mean, this can lead to anxiety and frustration for patients. It can lead to extra workload for GPs and primary care staff dealing with follow up phone calls from patients with queries about their tests. 

The NHS is planning to allow all patients to have access to their test results online, however these test results are not provided in a patient centered way, and this could exclude people who do not have access to the internet. 

Patient engagement and co-production are crucial to develop future research to improve test communication. The overall aims of this project are:

• To explore how poetry can be used in a creative way to engage the public in research
• Create an alternative way in which the voices of underrepresented people can be heard by the research community
• To engage a diverse group of participants with lived experiences of medical testing in research to improve test communication

We will do this through three poetry workshops, engaging underserved communities. We have already successfully piloted this approach with great success at a weekly community coffee morning (attended mostly by women of Somali and Caribbean heritage) in the Barton Hill/Lawrence Hill, an area of relatively low socioeconomic status in Bristol. We will produce a film using poems created during poetry workshops to share our work in a novel and creative way with patients and researchers. Finally, we will submit a workshop or oral presentation to the SAPC conference to share our creative approach and ‘found’ poems with a wider academic audience. This novel public engagement activity will be used to underpin Dr Watson’s future Advanced Fellowship application, which aims to use co-production methods in order to develop an intervention to improve test communication.