Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics. (19th December 2016)

• Record Type: Journal Article
• Authors: Khodyakov, Dmitry; Grant, Sean; Meeker, Daniella; Booth, Marika; Pacheco-Santivanez, Nathaly; Kim, Katherine K
• Is Part Of: Journal of the American Medical Informatics Association. Volume 24:Number 3(2017:May)
• Page Start: 537
• Page End: 543
• Publication Date: 2016-12-19
• Subjects: ExpertLens -- online modified-Delphi -- patient-centered outcomes research -- patient engagement -- pSCANNER -- stakeholder engagement; Medical informatics -- Periodicals; Information Services -- Periodicals; Medical Informatics -- Periodicals; Médecine -- Informatique -- Périodiques; Informatica; Geneeskunde; Informatique médicale; Computer network resources; Electronic journals; 610.285
• DOI: 10.1093/jamia/ocw157
• Languages: English
• ISSNs: 1067-5027

Abstract

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.