Encephalitis International publishes a new paper on Patient and Public Involvement
Encephalitis International is proud to share a new publication on their collaborative work with the University of Liverpool.
A newly published paper by Encephalitis International, including CEO Dr Ava Easton, reflects on the ways in which Patient and Public Involvement (PPI) was integrated into the COVID-CNS study, led by the University of Liverpool. PPI is an increasingly valuable component in research and it has become more important than ever for researchers to collaborate iteratively with patients and the public throughout their research, to ensure that their voice is not lost.
The paper evaluates the approach taken to PPI and reflects on the challenges encountered by those involved in the panel, not least due to the unique barriers posed by COVID-19 restrictions. The candid discussion of such limitations included challenges faced when trying to diversify panel members. Reflections on the experiences of the panel has formed a deeper understanding of the positive impact that PPI can have on the accessibility of patient-facing questionnaires. The paper closes by demonstrating the critical role of PPI within studies, whilst highlighting how the current lack of budget for PPI in research studies, limits its full potential for positive change.
The authors of this paper hope that the findings will be a stepping stone for further productive discussions around PPI, and highlight the value of prioritising listening to patient and public voices by integrating their role throughout the entire research process. The PPI activities carried out during COVID-CNS can act as a model for future research and makes a convincing argument for strengthened communication and collaboration between all lay and professional stakeholders in research.
Full text access to the paper can be found HERE!
With thanks and acknowledgement to all patients, caregivers, and researchers who contributed to the COVID-CNS study.
If you would like to learn more about PPI visit our PPI pages.
To learn more about opportunities to engage with PPI and encephalitis research activities , join our research panel.