Table 1.
Ranking of the most pressing ethical issues
| Rank | Ethical issue | Profile of panelists more likely to select the issue |
|---|---|---|
| 1 | Emergence of a class of professional patients (a reduced pool of patients with specific profiles which PER projects continually draw upon) | Younger, lower education level, student, less knowledgeable about PER, no experience with engaging PPRs |
| 2 | Patient remuneration | Older, higher education level, more knowledgeable about PER |
| 3 | Fair recognition and appreciation of patient expertise | No longer students, more knowledgeable about PER, experience with engaging PPRs |
| 3 | Using PER for the financial opportunities it presents to researchers without actually applying it once funding has been secured | No longer students |
| 5 | Power sharing between researchers and patients | Younger, lower education level, student, less knowledgeable about PER, no experience with engaging PPRs |
| 5 | Confidentiality | Higher education level, no experience with engaging PPRs |
| 5 | Exploitation of vulnerable persons | Student, less knowledgeable about PER |
| 8 | Paternalism and its off-shoots | Younger, lower education level, student |
| 9 | Educating patients about the world of research (structure, protocol format, validity criteria, etc.) | Older, higher education level, professional, more knowledgeable about PER, experience with engaging PPRs |
| 10 | Educating patients about research integrity | N/A (chosen by only one person) |