PREDICT-meso Network Member @AfroditaMarcu and her team at University of Surrey , working with the Univeristy of Leeds, have just published an interesting paper on Patient and Public Involvement (PPI) in mesothelioma.
It provides provides a detailed picture of the benefits and challenges of PPI in mesothelioma and is well worth a read!
Key findings are:
- Wanting to help other mesothelioma patients was one of the main motivations to take part in the project. One prominent motivation for participation was the search for meaning and hope for patients and their families.
- The coordinators from the mesothelioma patient organisations were interested to know more about PPI, research and mesothelioma-related activities so that they could inform the patients that they were supporting
- Participants were mainly motivated by a desire to get answers to questions around trials and treatment, but also to gain a sense of existential meaning and hope for the future
- Participants did not know what to expect of the project or of their role as PPI members, either because they were unfamiliar with the concept of PPI or because the project aim was not well explained or easy to grasp. For many participants, the purpose of PPI only became clear with time.
- The use of scientific language was an additional barrier to becoming involved in PPI activities, with some participants finding scientific jargon rather intimidating
- Need to provide more information about roles and relationships prior to our first meeting, as a lack of understanding about PPI was reportedly confusing our participants.
- Study has had considerable impact, as it has led to the creation of a sustainable PPI group, Me-So- Involved