Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics.

Abstract

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.

• Authors: Dmitry Khodyakov, Sean Grant, Daniella Meeker, Marika Booth, Nathaly Pacheco-Santivanez, Katherine K Kim
• Journal: Journal of the American Medical Informatics Association : JAMIA (J Am Med Inform Assoc) Vol. 24 Issue 3 Pg. 537-543 (May 01 2017) ISSN: 1527-974X [Electronic] England
• PMID: 28011596 (Publication Type: Comparative Study, Journal Article)
• Copyright: © The Author 2016. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: [email protected]

Topics

• Adult
• Biomedical Research
• Delphi Technique
• Female
• Humans
• Logistic Models
• Male
• Multivariate Analysis
• Online Systems
• Patient Outcome Assessment
• Patients
• Research Personnel
• Surveys and Questionnaires