Table 6 Recommendations to creating effective PPI in mesothelioma research
Challenges | What mesothelioma researchers can do |
|---|---|
1. Short timeframes to develop research ideas and apply for grant funding | Engage with local asbestos or mesothelioma support groups, e.g. Hampshire Asbestos Support & Awareness Group (HASAG), to recruit service users interested in research and build long-term collaborations |
2. “Patient and public involvement” is hard to grasp as a concept | Draw on the NIHR guidelines on PPI as well as other resources, e.g. Applied Research Collaboration networks, to explain, in lay terms, what PPI means to a lay public. When seeking patients and service users who are new to PPI, give concrete examples of PPI in past research on mesothelioma When involving patients and service users as PPI representatives over the course of a project, designate a research team member as support for PPI representatives in ongoing projects, include them in regular meetings and check if there are aspects of the project that are more difficult to understand. Provide training where necessary and where acceptable to people new to PPI |
3. Understanding the concept of “patient and public involvement” is a process that happens over time | Engage with service users over a number of occasions to facilitate their understanding of PPI, e.g. engage with patients and carers at mesothelioma events such as Action Mesothelioma Day Point new PPI representative in the direction of public-facing resources on PPI, e.g. NIHR “Become a Research Champion”, the “Be Part of Research” website, or the “European Patient Ambassador Programme” |
4. Abstract nature of PPI and scientific jargon can be intimidating to service users and the lay public | Explain research in lay language, using guidance such as that from NIHR on writing Plain English Summaries. Provide concrete examples of PPI activities to lay public and patients |
5. High burden of disease in mesothelioma | Where involving patients is not possible, involve instead family caregivers or bereaved family members and explain to them why their perspective is equally valuable |