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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 537-543 |
| Number of pages | 7 |
| Journal | Journal of the American Medical Informatics Association |
| Volume | 24 |
| Issue number | 3 |
| DOIs | |
| State | Published - 2017 |
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Keywords
- Expertlens
- Online modified-delphi
- Patient engagement
- Patient-centered outcomes research
- Pscanner
- Stakeholder engagement
ASJC Scopus subject areas
- Health Informatics
Cite this
Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics. / Khodyakov, Dmitry; Grant, Sean; Meeker, Daniella; Booth, Marika; Pacheco-santivanez, Nathaly; Kim, Katherine K.
In: Journal of the American Medical Informatics Association, Vol. 24, No. 3, 2017, p. 537-543.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Comparative analysis of stakeholder experiences with an online approach to prioritizing patient-centered research topics
AU - Khodyakov, Dmitry
AU - Grant, Sean
AU - Meeker, Daniella
AU - Booth, Marika
AU - Pacheco-santivanez, Nathaly
AU - Kim, Katherine K
PY - 2017
Y1 - 2017
N2 - 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.
AB - 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.
KW - Expertlens
KW - Online modified-delphi
KW - Patient engagement
KW - Patient-centered outcomes research
KW - Pscanner
KW - Stakeholder engagement
UR - http://www.scopus.com/inward/record.url?scp=85019741144&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85019741144&partnerID=8YFLogxK
U2 - 10.1093/jamia/ocw157
DO - 10.1093/jamia/ocw157
M3 - Article
C2 - 28011596
AN - SCOPUS:85019741144
VL - 24
SP - 537
EP - 543
JO - Journal of the American Medical Informatics Association : JAMIA
JF - Journal of the American Medical Informatics Association : JAMIA
SN - 1067-5027
IS - 3
ER -