Patients and the public were an integral part of the 2015–2022 NIHR BTRU in ODT. We worked closely with stakeholders to create a dynamic research environment with a commitment to shared values in PPIE and effective, timely reporting of evidence allowing translation into clinical practice. The BTRU’s management group benefitted from public members who assisted in the delivery of the unit’s aims.
Our Patient and Public Research Panel (PPRP) was established in 2016 and amassed 50 members by 2021. The PPRP played a pivotal role in the unit, with six new research applications supported in 2020–21 alone, including co-production of the second stage of the NIHR EME E-CLAD UK trial (Andy Fisher) with two lay co-applicants. The impact of our PPI was captured and included changes to the ideas around equity of access to organ perfusion technology.
We addressed inequalities in organ donation and transplantation, including an NIHR-funded systematic review and evidence synthesis in organ donation within Black, Asian and Minority Ethnic communities led by the Deputy Director (Andy Fisher) and former PPIE Lead (Jenny Hasenfuss). Through this we connected with various communities of experience and built relationships with local and national patient organisations, including the South Asian Health Network.
Our PPRP contributed to wider activities, including postgraduate training and joining a workstream within the Canadian Donation and Transplantation Research Programme. Our public engagement activity hit a peak in 2019–20, with BTRU patients, public and research colleagues coming together to host a symposium, talks and interactive stalls at a range of events including the World Transplant Games and Cambridge Festival. Our PPIE continued effectively despite the challenges posed by COVID-19 during the last two years of the unit. Moving to online remote working inspired blog posts and increased attendance at our engagement events.
We used creative methods to share perspectives on organ donation and transplantation and build an understanding between stakeholders. These included a Haiku poetry collection which was created jointly by colleagues from across the BTRU. An interactive session using poetry as a public engagement tool won the prize for the most creative session at the UK Knowledge Mobilisation Forum conference in March 2019. We disseminated news of our activities through the quarterly publication of the Get Involved newsletter and via Twitter, both of which will continue under the new unit.
We sought to strengthen the PPI literacy of colleagues, fostering strong links with other NIHR infrastructures.
To disseminate our PPI learning, we secured project funding from the Newcastle University Tilly Hale & Engage FMS schemes. This facilitated the project ‘Great Expectations: building a shared understanding of the role of lay co-applicants in research’ as a collaboration between the our BTRU, the BTRU in Donor Health and Genomics, NIHR Research Design Service North East and public members. The key learnings from the 2021 lay co-applicant workshop have been captured in a video animation, which has been disseminated widely to colleagues within health and social care research settings.
We will build on these firm foundations in the 2022–2027 NIHR BTRU in ODT and look forward to continuing to work with our many PPIE colleagues in the future.