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PPI Activities at Encephalitis International

Our CEO, Dr Ava Easton, has been heavily involved in PPI work and has headed innovative activities for recent studies which are supported by Encephalitis International. An example of this, is the COVID-19 Clinical Neuroscience Study (COVID-CNS) for which Ava chaired their PPI panel. The COVID-CNS study involved multiple researchers across the University of Liverpool and King’s College London, asking important questions in order to, understand the biological causes of neurological and neuropsychiatric complications in hospitalised COVID-19 patients. [Further details on the study’s published findings can be found here: COVID-19 Clinical Neuroscience Study (COVID-CNS) – COVID-19 Clinical Neuroscience Study (COVID-CNS) – University of Liverpool

This PPI panel was a multi-disciplinary team including patients and patient advocates. Panels such as this brings different perspectives, experiences, and knowledge to the
research process.

Ava continues to champion the involvement of people affected by encephalitis into research.

Examples of other PPI work

PPI activities can be very varied. Some of the crucial work that people have been involved in includes:

  • Reviewing and commenting on patient information
    sheets and consent forms
  • Acting as patient representatives
  • Sitting on PPI panels, to share the perspectives of people
    living with encephalitis.
  • Helping to create study promotional materials
  • Recruiting for pilot studies
  • Giving feedback on the accessibility of research materials, such as follow-up questionnaires
Page Created: 18 March 2024
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