330004
Engaging Stakeholders to Determine the Role and Functionality for an Online Comparative Effectiveness Research Community in Chronic Obstructive Pulmonary Disease (COPD)
Tuesday, November 3, 2015
Samantha Paige, MPH,
Department of Health Education and Behavior, University of Florida, Gainesville, FL
P.S. Sriram, MD,
Division of Pulmonary, Critical Care & Sleep Medicine, College of Medicine, University of Florida, Gainesville, FL
LePaige Godfrey,
College of Medicine/Department of Epidemiology, University of Florida, Gainesville, FL
There is limited Comparative Effectiveness Research (CER) that has engaged patients with Chronic Obstructive Pulmonary Disease (COPD), their informal caregivers, and other key stakeholders throughout the research process. The purpose of this formative study was to identify stakeholder expectations for an online community website dedicated to improving CER in COPD. Members of various stakeholder groups (n=29), including local clinicians, researchers, informal caregivers, and medically underserved patients with COPD reviewed a “video prospectus” for an online community website powered by social media. Following their review, stakeholders were asked to rate the importance of the following (1=most important, 6=least important): (1) purposes for the online community, (2) roles and responsibilities of potential members, (3) online education and research-related resources to be included for community members, and (4) the anticipated frequency of visiting the online community website. The top ranked purposes included accessing results from recent CER studies (M=2.34, SD=1.19) and learning from others affected by COPD (M=2.34, SD=1.19). Participants perceived their roles/responsibilities to primarily be meeting with others interested in COPD, and suggesting, commenting on, and voting for new ideas for future CER studies in COPD. With regard to desirable online resources, stakeholders requested COPD educational videos, news updates related to ongoing CER in COPD, and downloadable research reports and summaries. Most stakeholders (n=22) reported that they were likely to visit the community website at least a few times per month. Healthcare policymakers should consider gathering formative data from patient community members prior to creating stakeholder forums designed to elicit meaningful engagement.
Learning Areas:
Advocacy for health and health education
Assessment of individual and community needs for health education
Chronic disease management and prevention
Communication and informatics
Conduct evaluation related to programs, research, and other areas of practice
Learning Objectives:
List two potential purposes for an online stakeholder community focused on comparative effectiveness research (CER) in COPD.
Describe three perceived roles/responsibilities of local stakeholders within online communities designed to inform future CER in COPD.
Identify three types of online resources that stakeholders perceive as valuable in online communities designed to inform future CER in COPD.
Keyword(s): Chronic Disease Management and Care, Community-Based Partnership & Collaboration
Presenting author's disclosure statement:Qualified on the content I am responsible for because: I am a doctoral student in the Department of Health Education & Behavior, where I serve as a research assistant on projects related to eHealth and chronic disease. I have held positions at the U.S. Department of Health and Human Services and Purdue University Student Health Center, where I assisted with the development, management, and evaluation of social media outreach initiatives. In these roles, I regularly collaborated with stakeholders from local, state, and federal organizations.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.
