Evaluating Comparative Effectiveness Research Priorities for Care Coordination in Chronic Obstructive Pulmonary Disease: A Community-Based eDelphi Study

Abstract

BackgroundDespite research supporting the use of care coordination in chronic obstructive pulmonary disease (COPD), there is relatively little known about the comparative effectiveness of different strategies used to organize care for patients. To investigate the most important COPD care coordination strategies, community-based stakeholder input is needed, especially from medically underserved populations. Web-based platforms are electronic tools now being used to bring together individuals from underrepresented populations to share input and obtain clarification on comparative effectiveness research (CER) ideas, questions, and hypotheses.ObjectiveUse low computer-literate, collaborative survey technology to evaluate stakeholder priorities for CER in COPD care coordination.MethodsA mixed-method, concurrent triangulation design was used to collect survey data from a virtual advisory board of community-based stakeholders including medically underserved patients with COPD, informal caregivers, clinicians, and research scientists. The eDelphi method was used to conduct 3 iterative rounds of Web-based surveys. In the first 2 survey rounds, panelists viewed a series of “mini research prospectus” YouTube video presentations and rated their level of agreement with the importance of 10 COPD care coordination topics using 7-point Likert scales. In the final third-round survey, panelists ranked (1=most important, 8=least important) and commented on 8 remaining topics that panelists favored most throughout the first 2 survey rounds. Following the third-round survey, panelists were asked to provide feedback on the potential impact of a Web-based stakeholder engagement network dedicated to improving CER in COPD.ResultsThirty-seven panelists rated the following care coordination topics as most important (lower means indicate greater importance): (1) measurement of quality of care (mean 2.73, SD 1.95); (2) management of COPD with other chronic health issues (mean 2.92, SD 1.67); (3) pulmonary rehabilitation as a model for care (mean 3.72; SD 1.93); (4) quality of care coordination (mean 4.12, SD 2.41); and (5) comprehensive COPD patient education (mean 4.27, SD 2.38). Stakeholder comments on the relative importance of these care coordination topics primarily addressed the importance of comparing strategies for COPD symptom management and evaluating new methods for patient-provider communication. Approximately one half of the virtual panel assembled indicated that a Web-based stakeholder engagement network could enable more online community meetings (n=19/37, 51%) and facilitate more opportunities to suggest, comment on, and vote for new CER ideas in COPD (n=18/37, 49%).ConclusionsMembers of this unique virtual advisory board engaged in a structured Web-based communication process that identified the most important community-specific COPD care coordination research topics and questions. Findings from this study support the need for more CER that evaluates quality of care measures used to assess the delivery of treatments and inte...

COPD360social Online Community: A Social Media Review

“…Additionally, COPD360social uniquely blends transactional computer-mediated communication techniques with evidence-based processes for creating and delivering chronic disease self-management education (Stellefson et al, 2015; Vogelmeier et al, 2017). Leveraging social technologies to educate, engage, and empower patient communities and their families is within the scope of health education/promotion practitioners’ professional responsibilities; however, health education specialists often lack guidance on how to facilitate social ties within health-related online communities.…”

“…Through its interactive features, COPD360social enables patients, caregivers, academic researchers, and health education/promotion practitioners to share resources and cultivate helping relationships grounded in respect and mutual understanding. COPD360social also promotes self-management of COPD by focusing on important care coordination topics relevant to patients, their families and practitioners (Krishnan et al, 2013; Stellefson et al, 2015). Since its release in November 2014, COPD360social has impressively grown to over 30,000 members from 120 countries.…”

“…The recent COPD National Action Plan (2017) has identified the need for novel methods that engage and empower people affected by COPD to recognize and reduce symptom burden (Kiley & Gibbons, 2017). While generic social media websites promote COPD patient education (Paige, Stellefson, Chaney, & Alber, 2015; Stellefson et al, 2014), disease-specific online platforms can help establish more salient social networks that improve access to specialized, timely, and relevant health information (Stellefson, Alber, Paige, Castro, & Singh, 2015). This article reviews a free, publicly available online community and support network hosted by the COPD Foundation known as COPD360social.…”

Recruitment in online research for COPD: leveraging social media and research registries

“…An international priority is to engage patients at-risk of or living with chronic obstructive pulmonary disease (COPD) in online research and self-management programmes to establish evidence for their efficacy and obtain patient perspectives about healthcare [1]. Participatory social media and electronic research registries pose opportunities for stakeholders to readily access this patient population [2–4]. Despite increased access, patients with COPD continue to report limited willingness to participate in online disease-specific programmes and studies [5].…”

The use of advanced web‐based survey design in Delphi research

“…In addition, advanced web-based survey design allows for the embedding of explanatory videos and other multimedia in the survey. This may be useful in engaging participants by acknowledging differing learning approaches to explain the Delphi research process and facilitating feedback of information across rounds (Stellefson, Alber, Paige, Castro, & Singh, 2015). Such benefits may be counter- (Guise et al, 2010).…”