Table 2 Organizational support for generating patient-informed guidelines
Organizational support | Respondents n,% |
|---|---|
Organizational strategic plan includes consideration of patient preferences in guideline development | 34 (65.4) |
Patients involved in any patient preferences activities must declare conflicts of interest/biases | 29 (55.8) |
Organization has a policy specific to patient engagement | 25 (48.1) |
Pool of patients who have volunteered to be involved in patient preferences activities | 25 (48.1) |
Patients are involved in evaluation of patient preferences activities, processes, outputs, or impacts | 17 (32.7) |
Patient advisory committee (separate from guideline development panel) that informs patient preferences activities | 16 (30.8) |
Training is provided to patients prior to involvement in patient preferences activities | 16 (30.8) |
Formal evaluation of patient preferences activities, processes, outputs, or impacts | 16 (30.8) |
Reimbursement or honorarium provided to patients for expenses incurred during patient preferences activities | 16 (30.8) |
Operational funding dedicated to patient preferences | 15 (28.9) |
Manager responsible for patient preferences on a part-time basis (one part of the manager’s portfolio) | 14 (26.9) |
Patient preferences liaison available to patients for consultation as needed | 12 (23.1) |
One or more part-time staff working under patient preferences manager on patient preferences activities | 10 (19.2) |
Preferences-specific training is provided to clinicians/staff involved in guideline development or patient preferences activities | 9 (17.3) |
Debriefing of patients following involvement in patient preferences activities | 9 (17.3) |
Compensation provided to patients for their time spent in patient preferences activities | 9 (17.3) |
Ongoing preference-specific training opportunities for patients after initial onboarding | 8 (15.4) |
Debriefing of clinicians/staff following involvement in patient preferences activities | 8 (15.4) |
Debriefing of clinicians/staff following involvement in patient preferences activities | 8 (15.4) |
Manager responsible for patient preferences, full-time | 5 (9.6) |
One or more full-time staff working under patient preferences manager on patient preferences activities | 5 (9.6) |
Chair or Co-chair of each guideline development panel is a patient | 3 (5.8) |