Table 1 Thematic structure
Theme | Subthemes | Examples |
|---|---|---|
Content | Research literacy | Researchers and universities can seem intimidating |
Empowerment | Wider lack of awareness amongst public of how to get involved in research | |
Interaction | Move away from traditional methods of dissemination | |
Communicating about PPIE | Frustration about “not hearing back” if you have helped out | |
Information about studies | Dislike of term “lay summaries” | |
Dissemination of findings | Frustration with not seeing how research has changed practice for patients | |
Usability | Too academic Corporate Less is more Visuals | Elitist Hard work, cognitively demanding to work through webpages (information overload) Want to connect and talk to researchers Can feel overwhelming with too much information Navigation was tricky for some with some confusion over what things were in each section and occasionally inadvertently veering off the hub to other pages Unclear at times as to who sections were intentionally for |
Signposting | Links via trusted organisations, other groups Visibility on noticeboards, social media Tailor messages/information to specific groups | Suspicion over websites, sites text message that are not associated with familiar organisations e.g., NHS Traditional methods e.g., community noticeboards are still acceptable for sharing information Some organisations/ groups e.g., Patient Panel Groups within General Practices may not know that they could help to signpost, and how |
Connectedness | Equality, Diversity, Inclusion Disconnect Connections to researchers and universities Active partnership with HEI | Sense of belonging Not being heard Not feeling connected Feeling that macro level organisations are not connected to individuals Research may be viewed as an “academic exercise” not based on real need |