UC Davis

Objective

Little evidence exists about effective and scalable methods for meaningful stakeholder engagement in research. We explored patient/caregiver experiences with a high-tech online engagement approach for patient-centered research prioritization, compared their experiences with those of professional stakeholders, and identified factors associated with favorable participant experiences.

Methods

We conducted 8 online modified-Delphi (OMD) panels. Panelists participated in 2 rating rounds with a statistical feedback/online discussion round in between. Panels focused on weight management/obesity, heart failure, and Kawasaki disease. We recruited a convenience sample of adults with any of the 3 conditions (or parents/guardians of Kawasaki disease patients), clinicians, and researchers. Measures included self-reported willingness to use OMD again, the panelists' study participation and online discussion experiences, the system's perceived ease of use, and active engagement metrics.

Results

Out of 349 panelists, 292 (84%) completed the study. Of those, 46% were patients, 36% were clinicians, and 19% were researchers. In multivariate models, patients were not significantly more actively engaged (Odds ratio (OR) = 1.69, 95% confidence interval (CI), 0.94-3.05) but had more favorable study participation (β = 0.49; P  ≤ .05) and online discussion (β = 0.18; P  ≤ .05) experiences and were more willing to use OMD again (β = 0.36; P  ≤ .05), compared to professional stakeholders. Positive perceptions of the OMD system's ease of use (β = 0.16; P  ≤ .05) and favorable study participation (β = 0.26; P  ≤ .05) and online discussion (β = 0.57; P  ≤ .05) experiences were also associated with increased willingness to use OMD in the future. Active engagement was not associated with online experience indices or willingness to use OMD again.

Conclusion

Online approaches to engaging large numbers of stakeholders are a promising and efficient adjunct to in-person meetings.