Published: 11 May 2021

Patient and public involvement (PPI) has its challenges, but as a small charity funding in a rare disease area, the Tuberous Sclerosis Association (TSA) faces more than many.

Despite this, the small TSA team supports a broad range of activities to make sure that people and their families affected by Tuberous Sclerosis Complex (TSC) are at the heart of everything the charity does. This is done through the TSC research volunteer network -  a group people with lived experience who are involved in research priority setting, reviewing funding applications and raising awareness publicly at events as well as directly with researchers. 

We were lucky to hear about their work when Pooja Takhar, Head of Research at the charity came to speak at AMRC’s latest Research Manager’s Working Group meeting. In this video, she proudly recaps the learnings she shared with the group, and her positive experience of presenting and discussing the topic with peers. Having been part of the group for the last 7 years, Pooja says she has learnt a lot, made good connections and new friends.

In this conversation, Pooja shares her suggestions on where to focus resources for PPI if they are low, as well as covering some of the key questions bought up at the meeting including how to handle discrepancies between scientific and lay reviewers when deciding what research to fund and how to consider diversity in PPI activities.