Table 3.
Main themes identified from written feedback on post-intervention questionnaire
| Group | Role | Comment |
|---|---|---|
| Limited Personal Interactions | ||
| Wiki | Caregiver | “It was easier not to put your whole heart into this as it would have been if it were done face to face with the other participants… I felt something was missing, some sort of connection with others facing the same difficulties.” |
| Wiki | Health Care Professional | “The wiki seemed to reward the last person to change the rankings. In person, a doc such as me could have had a more subtle way to influence the process without being aggressive or trying to take it over.” |
| Importance of Communication to Justify Selections | ||
| Wiki | Patient | “When people explained their rationale for their preferences, I understood. When the ranking was changed without using the chat feature to augment our understanding, I could not discern the rationale for the preferences.” |
| Wiki | Patient | “Although I enjoyed the discussions that did occur and the mix of group members (caregiver, patient, clinician), I'm not sure, as a whole, we really made the most of the chat feature.” |
| Wiki | Health Care Professional | “I think any changes in the top 10 should have had comments to support these changes.” |
| Wiki | Health Care Professional | “In a discussion forum online, I also didn't feel comfortable asking specific people to clarify or explain their choices.” |
| Format Effectiveness | ||
| Workshop | Caregiver | “The format enabled patients and caregivers to engage with a wide group of professionals, other than the traditional doctor-patient relationship.” |
| Wiki | Patient | “Basically, I felt this process was less effective and that we didn't actually reach a group consensus with our outcomes.” |
| Workshop | Patient | “The only part that was not entirely satisfactory was the final phase in which the entire group worked to re-order priorities. I felt that it lacked the fluidity and finesse to allow for minor changes.” |
| Perspectives Dependent on Participation | ||
| Wiki | Patient | “I was disappointed by the participation rate (those who did not participate). I think this affected the quality of the discussions and possibly weakened the final outcome.” |
| Workshop | Health Care Professional | “Some opinions/voices might not be represented depending on who attends (is able to attend) and who is approached to attend the workshop.” |
| Ability to Contribute Meaningfully | ||
| Workshop | Caregiver | “As a layperson I felt that even though I did not have the hard earned scientific expertise of the medical community, all our experiences were considered on their merits.” |
| Workshop | Patient | “The workshop was an amazing experience where a collaborative effort of all affected people by CKD joined together to come up with the top 10 important and highly timely research uncertainties that will give better life with the patients.” |
| Workshop | Patient | “I left feeling that in some small way I had contributed to research possibilities for my disease which currently has no cure.” |