Patient and public involvement activity and impact
Our PPI team (Jenny Teke, Abi Ojo, Mike Willis, Gulsoom Akhtar, Clair Goddard, Beth Clegg, led by Ken Clare) represents a range of ages, genders, ethnicities and lived experience of T2D and/or obesity. In the last 6 months, unfortunately, Clair had to resign due to a change in employment, and three new members (Chris, Sarah-Louise and John) joined to bring a lived experience of undertaking the LCD programme, as we work to co-develop a long-term follow-up study (currently under review with Diabetes UK). This study simply would not have been achieved without the PPI team, who played a critical role in every stage of the research. A summary of our PPI activity and impact is summarised in Table 1.
| PPI activity | Impact |
|---|---|
| Initial proposal conception and co-development | A successful patient-centred proposal |
| Biannual PPI meetings | Continuous research co-development and patient-centred focus to research conduct, interpretation and dissemination |
| PPI WhatsApp group, regular member check-ins, session evaluations and post-session support provided by PPI lead Ken Clare | Highly productive and cohesive group working and very low attrition |
| PPI data collection training | PPI members took part in the patient interview data collection, which enhanced the patient-centredness of our approach, enriched the study data and contributed to developing participant relationships which resulted in excellent adherence rates |
| PPI lead Ken Clare represented the group at all internal and external project meetings | PPI activity and input are shared, discussed and actioned during every stage of the research |
| PPI member co-design and testing of all patient-facing materials | Good study uptake and completion rates |
| PPI members fed into NIHR reporting | Ensure all PPI activity is documented and shared |
| PPI co-development of study website: www.remission.study and supporting materials (Table 2) | Expanded reach and engagement of the research and study |
| PPI ongoing research co-development | A new co-developed research proposal and the recruitment of three new PPI team members |
| PPI involvement in service user interviews at 12, 18 and 52 weeks | Enhanced participant engagement, enriched study data and person-centred focus |
| PPI-led dissemination and learning (see Public and patient involvement dissemination and shared learning) | Significantly enhanced reach and impact of the study |
Patient and public involvement dissemination and shared learning
Our PPI team played a critical role in the co-development of dissemination materials and were actively involved in the process of sharing learning. These activities are documented in Table 2.
| Dissemination and shared learning activities | Outputs and impact |
|---|---|
| Co-presentation of the Re:Mission study at European Congress on Obesity (ECO) 2021 online and Re:Mission study posters ECO 2022 in Dublin | Shared learning to an international audience, and co-authorship of conference abstracts |
| Co-presentation of the Re:Mission study posters at the UK Congress on Obesity (UKCO) in Lancaster 2022 | Shared learning to a national audience, and co-authorship of conference abstracts |
| Co-presentation of the Re:Mission study and good practice PPI learning to the sense nutrition professional group in Autumn 2023 | Shared learning to a large audience of nutrition professionals |
| Co-authorship of key patient-orientated papers – see RA10, RA12, RA13, RA19, RA20, RA22 | Co-authorship of international peer-reviewed manuscripts, which emphasise the importance of person-centred care |
| The Re:Mission study PPI group’s own peer-reviewed publication (RA1) | PPI-led production and authorship of a peer-reviewed manuscript which shares critical learning from the Re:Mission study PPI activity to an international audience |
| Co-presentation at the Yorkshire Obesity Research Alliance event | Shared learning and best practice with key policy, practice and public stakeholders across Yorkshire |
| Presentation of Re:Mission PPI activity by three group members at the ASO webinar: the importance of PPI from a research and public perspective | Shared learning and best practices to key policy-makers and practitioners across the UK |
| Co-presentation of a PPI workshop to early career researchers (ECR) which used the Re:Mission study as an example of good practice at UKCO 2022 ECR day | Shared learning around the importance of PPI to a national audience of ECR professionals; this included a practical workshop where delegates were supported to develop their own PPI plans |
| Co-presentation of a PPI workshop to ECR which used the Re:Mission study as an example of good practice for the European Association for the Study of Obesity November 2023 | Shared learning around the importance of PPI to an international audience of ECR professionals. This has changed views, perceptions and practice around PPI internationally |
| PPI-led presentation to the Yorkshire and Humber Clinical Research Network on the Re:Mission study and best practice PPI learning in 2023 | Shared learning on the study findings and good PPI practice to a regional diabetes audience |
| PPI co-development of study website materials: Participation filmPatient experience blogsGlossary of terms | Expanded reach and engagement of the research and study. For example, the participant survey video has received 337 views (28 September 2024) |
| PPI co-development of LCD patient journey film and illustrated patient journal | These materials will be used to help communicate the evaluation findings (patient journal) and patient experience to a wide range of stakeholders which include the general public, GPs, SPs, to raise awareness of the programme and the evaluation findings to the widest possible audience (directly addressing a need arising from the evaluation findings) |
| Co-presentation of the planned Re:Mission study British Journal of Diabetes recorded webinar (March 2024) | This will showcase learning from the patient experience special edition to a national and international audience of diabetes specialists |
| PPI member chaired the LCD symposium at UKCO 2024 | Demonstrates the importance and impact of the voice of lived experience |