Table 2.
Experiential knowledge: Coding framework from the meeting transcripts
| Category | Code | Definition |
|---|---|---|
| 1. Roles | 1.1 Reference to public collaborators' own role | A statement, story, comment or other utterance comes from a public collaborator and includes a reference or alluding to the role that the person has as a public/patient/carer collaborator. For example, by saying ‘I don't want to be difficult’, ‘this isn't a criticism’, ‘can I just ask’, and so forth. |
| 2. Clarification—Public collaborator asks clarifying questions which are: | 2.1 Clarification supported by own experience | A public collaborator asks a question that refers to, or is clearly anchored in, their own experience. It needs to be explicit that the experience referred to is their own. For example, ‘Would that work? Because when I tried it didn't really help me’. |
| 2.2 Explicit reference to own lack of knowledge | Absence of knowledge—could be technical or experiential—the public collaborator explicitly refers to own lack of knowledge, for example, I don't know, I'm not sure and so forth. | |
| 2.3 Clarification supported by one's own understanding of the topic | A public collaborator asks a question that is anchored in their knowledge about the topic. Their topic knowledge must be clearly referred to, for example, ‘So if I understand you correctly, clinical effectiveness is found when you compare this new treatment to what's currently delivered by GPs?’. | |
| 2.4 Clarification with reference to other people's perspectives/lives including popular culture | A public collaborator asks a question on behalf of others, either because they are prompted or because of own initiative. For example, ‘we don't seem to have a problem with X‐raying vast amounts of people umm exposing them to radiation for breast cancer screening just wondering why we would consider it for this?’. | |
| 2.5 Clarification, unsupported | A public collaborator asks a question but it is not clear what the question is arising from, beyond it being asked to clarify something. This could be naïve questions, for example, ‘What is clinical effectiveness?’ and this could be asked more elaborately, for example, ‘When you told us about the study and the treatment, you mentioned clinical effectiveness and I don't understand this word, what is clinical effectiveness? Has it got anything to do with clinical practice?’. | |
| 3 Stories—Public collaborator tells stories | 3.1 Personal story | Stories related to themselves. |
| 3.2 Distancing story | Shares a story but they are using nouns that generalize the story, for example, words like ‘one’ instead of ‘I’, or ‘people’ instead of ‘we’. | |
| 3.3 Others' story | Shares a story about a friend, family member, or something they witnessed or were told. This can include observed stories about something a public collaborator has seen, for example, someone's treatment by a nurse, and representative stories where the public collaborator speaks on behalf of others and may be relating stories from, for example, a patient group they belong to. | |
| 3.4 Concern | Shares a concern or raises a question that relates to their own experiences, for example, but not limited to asking for advice or bringing up a problem with an existing service. | |
| 4. Answering a question | 4.1 Answering questions | A public collaborator answers question about his/her own behaviour, views or experience directly. This is brief, can include details of experience but is shorter than a story. |
|
5. Commenting: Comments are not stories, but views/statements/opinions on what's being said in the meeting. The subcodes in this category mirror the subcodes in category 2 (clarification), see this set for full definitions. |
5.1 Comment supported by own experience | Connecting a personal experience with the project. It needs to be explicit that the experience referred to is their own. |
| 5.2 Comment with explicit reference to own lack of knowledge | Absence of knowledge—could be technical or experiential—the public collaborator makes a comment and explicitly refers to his/her own lack of knowledge. | |
| 5.3 Comment with reference to the understanding of the topic | A public collaborator makes a comment anchored on their knowledge about the topic. Their topic knowledge must be clearly referred to. | |
| 5.4 Comment with reference to other people's perspectives/lives including popular culture | A public collaborator makes a comment on behalf of others. | |
| 5.5 Unsupported comment, which could include an opinion | ||
| 6. Researcher's input | 6.1 Researcher experiential knowledge | Researcher shares personal experience. |