The Patient and Public Involvement and Engagement group will work across all of the Convalescence research themes. Areas for patient and public involvement include gaining ethical approval for our work, selection of data variables, design of data collection instruments, data interpretation, development of definitions and dissemination.
The impact of long COVID has significant implications for those who suffer from it, their carers and wider society. There is an ethical need to involve those people who our work is meant to benefit. We also think that our PPI/E work will increase's the practical value of our research.
This will be achieved by:
- Formation of a Public Advisory Group (PAG) made up of those people most affected by long COVID
- Facilitated on-line forum discussions which will enable us to talk to a much wider group of patient, carers and the public
- Provision of training and support to ensure that patients and the public are able to be meaningfully involved in every stage of our research
- Real-time evaluation to enable us to develop our work to meet the needs of our public contributors and researchers
Long Covid PPI Plan
Andy Gibson, John Kellas and Sophie Taysom
Public involvement will become a cross cutting theme in our research. The aim will be to ensure that our work is informed by the experiential knowledge that is held by people who have been directly or indirectly affected by long COVID. This will maximise the potential benefits of our work to people who have been impacted by long COVID and wider society.
This area of research, utilising mixed methods and making use of large quantitative data sets and statistical analysis, requires a bespoke approach to involvement. The work will be led by Dr Andy Gibson with support from John Kellas and Dr Sophie Taysom.
Andy Gibson is an Associate Professor of Public Involvement at the University of West England. He leads the regional public involvement network, People in Health West of England (see www.phwe.org.uk ). He is nationally and internationally recognised for his academic and practical work on public involvement and has extensive links within the public involvement community.
John Kellas is a Community Learning and Development professional and Director of This Equals - a tech, data and community engagement company. He is an expert in PPI and in partnership with Gibson, designed and delivered tailored PPI digital products and a Digital Health and Uses of Data training session used in Bristol and Oxford (BRC).
Sophie Taysom, a This Equals associate, would also be providing support. She has expertise in stakeholder engagement and has extensive experience in health policy.
Public Involvement Advisory Group (PAG)
We will form a PAG of approximately 12 people to guide our research work. The group will be made up of individuals with a diverse range of experience, and ensure that diversity is built in from the outset. The group will also include people who have experience of COVID, long COVID, carers, people who have recovered from COVID. We will advertise the opportunity to be involved in this work through multiple channels - via newsletters and social media, for example the NIHR ARC communications network led by ARC West, relevant websites, e.g. the NIHR database of involvement opportunities https://www.peopleinresearch.org/view-opportunities/ and via the PPI leads for the cohort studies we will be working with who have already developed significant involvement with public contributors. People would be invited to submit an EOI. The final membership of the group will be determined through group discussions with the applicants, facilitated by Gibson and Kellas, with final decision through agreement of PAG members by Gibson and the LH&W Executive Group (co-chaired by Chaturvedi and Sterne). The overall criterion for deciding the composition of the group will be the need to capture a balance of differing experiences of long COVID.
Once formed, the group will select a chairperson and nominate two members to attend quarterly meetings of the COVID-19 longitudinal health and wellbeing Executive Group. The full PAG group will meet independently twice a year to monitor progress, receive updates and ensure our work delivers maximum benefit to patients and carers.
In keeping with the national coverage of the project, Membership of the group will be from more than one geographical area. We will communicate with members through a variety of media including video conferencing and a newly developed digital platform for supporting online public involvement conversations (https://discourse.phwe.org.uk/). The platform will also allow us to, in a controlled way, supplement involvement from our PAG with on-line moderated forum discussion groups involving a wider range of people affected by long COVID.
Members of this group will also be involved in each of the work packages (WP) as described below. How this works in practice will be flexible but we have identified the following as key areas for involvement:
● Input into the design of the survey and ethics application
● Development of long COVID definitions
● Development of the focus group, interview, and schedules
● Interpretation of the survey data and interview data
● Input into the selection of data variables to be collected. What would be important to know from a patient perspective?
● Interpretation of the data
● Input into development of interview schedules and what quantitative data it is intended to collect (in collaboration with Carpentieri and Sheard)
● Interpretation of qualitative data and quantitative data on long-term outcome of COVID-19.
● Public contributors will co-produce, with the research team, an accessible way of presenting the data from the project to non-academic audiences, drawing on the experience and learning from public involvement developed over the course of the project as detailed above. We will work with John Kellas to explore the possibility of using modern data visualisation techniques to do this in an innovative and accessible way.
Training and Support
Andy Gibson and John Kellas will develop bespoke training to support full and meaningful public involvement in this highly technical area. Gibson and Kellas have already successfully developed generic training in the area of digital health and research. The training they develop for this project will give our public contributors a good understanding of the relevant quantitative and qualitative methodologies and data analysis techniques. This will enable them to be involved in every stage of the research, including data interpretation, synthesis and dissemination. In particular, John Kellas will contribute his expertise in data visualisation to explore novel ways of presenting our data and findings to non-academic audiences.
We will use the NIHR Public Involvement standards to guide our work. We will use a public involvement impact log, developed by People in Health West of England, to monitor the impact of our work in combination with a newly produced on-line evaluation tool (https://evaluationcube.phwe.org.uk/nihr) developed by Gibson and Kellas.