Empowering the Participant Voice (EPV) is an NCATS-funded six-CTSA collaboration to develop, demonstrate, and disseminate a low-cost infrastructure for collecting timely feedback from research participants, fostering trust, and providing data for improving clinical translational research. EPV leverages the validated Research Participant Perception Survey (RPPS) and the popular REDCap electronic data-capture platform. This report describes the development of infrastructure designed to overcome identified institutional barriers to routinely collecting participant feedback using RPPS and demonstration use cases. Sites engaged local stakeholders iteratively, incorporating feedback about anticipated value and potential concerns into project design. The team defined common standards and operations, developed software, and produced a detailed planning and implementation Guide. By May 2023, 2,575 participants diverse in age, race, ethnicity, and sex had responded to approximately 13,850 survey invitations (18.6%); 29% of responses included free-text comments. EPV infrastructure enabled sites to routinely access local and multi-site research participant experience data on an interactive analytics dashboard. The EPV learning collaborative continues to test initiatives to improve survey reach and optimize infrastructure and process. Broad uptake of EPV will expand the evidence base, enable hypothesis generation, and drive research-on-research locally and nationally to enhance the clinical research enterprise.

Reflecting on sustained calls for patient-centredness and culture change in long-term care, we evaluated the relative importance of personal and organisational predictors of palliative care, hypothesising the former as weaker predictors than the latter. Health-care employees (N = 184) from four Canadian long-term care homes completed a survey of person-centred care, self-efficacy, employee wellbeing and occupational characteristics. Using backward stepwise regression models, we examined the relative contributions of these variables to person-centred palliative care. Specifically, blocks of variables representing personal, organisational and occupational characteristics; palliative care self-efficacy; and employee wellbeing were simultaneously regressed on variables representing aspects of person-centred care. The change in R2 associated with the removal of each block was examined to determine each block's overall contribution to the model. We found that occupational characteristics (involvement in care planning), employee wellbeing (compassion satisfaction) and self-efficacy were reliably associated with person-centred palliative care (p < 0.05). Facility size was not associated, and facility profit status was less consistently associated. Demographic characteristics (gender, work experience, education level) and some aspects of employee wellbeing (burnout, secondary trauma) were also not reliably associated. Overall, these results raise the possibility that humanistic care is less related to intrinsic characteristics of employees, and more related to workplace factors, or to personal qualities that can be cultivated in the workplace, including meaningful role engagement, compassion and self-efficacy.