Stakeholder Priorities for Comparative Effectiveness Research in Chronic Obstructive Pulmonary Disease

Krishnan, Jerry A.; Lindenauer, Peter K.; Au, David H.; Carson, Shannon S.; Lee, Todd A.; McBurnie, Mary Ann; Naureckas, Edward T.; Vollmer, William M.; Mularski, Richard A.

doi:10.1164/rccm.201206-0994ws

Cited by 37 publications

(29 citation statements)

References 12 publications

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“…The complete methods for the identification of the study population have previously been published. [25] Briefly, subjects were selected from the COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) DataHub,[26] which comprises over 220,000 patients aged ≥40 identified administratively from 2006-2010, drawn from 7 sites representing academic, private, and integrated healthcare organizations. We invited a subset of participants complete an in-person study visit and provide written informed consent (VA Puget Sound IRB #00207).…”

Section: Methodsmentioning

confidence: 99%

Patient characteristics associated with poor inhaler technique among a cohort of patients with COPD

Melzer

Ghassemieh

Gillespie

et al. 2017

Respiratory Medicine

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Background Inhaled therapies are the cornerstone of pharmacologic management for COPD. Each device requires a unique series of steps to be most effective, making appropriate instruction in inhaler technique a key part of the management of COPD. Objectives Examine characteristics of patients and devices associated with poor technique among patients with COPD. Methods Cross-sectional study of subjects with COPD using at least one of: metered dose inhaler, Advair Diskus, Spiriva Handihaler, identified from the COPD Outcomes-based Network for Clinical Effectiveness and Research Translation (CONCERT) registry. Technique was assessed face-to-face using manufacturer-provided dummy inhalers, with standardized checklists for each device. We used logistic regression to model associations with poor inhaler technique, defined as an error in ≥20% of the steps, as a function of patient characteristics, with educational attainment the primary predictor. Results 688 individuals meet eligibility criteria, 65.5% had poor technique for at least one device. In adjusted analyses, Black race was associated with poor technique (OR 3.25, 95%CI 1.86-5.67) while greater than high school education was associated with decreased odds of poor technique (OR 0.35, 95%CI 0.17-0.70 for trade school/some college, OR 0.25, 95%CI 0.11-0.61 for college or more, p≤0.001 for test of linear trend). The percentage of errors varied between devices, with subjects making proportionally the most errors for MDIs. Conclusions Poor inhaler technique is common among individuals with COPD, varies between devices, and is associated with race and educational attainment. Tailored educational interventions to teach inhaler should be part of the process of initiating and monitoring inhaled therapies.

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Section: Methodsmentioning

confidence: 99%

Patient characteristics associated with poor inhaler technique among a cohort of patients with COPD

Melzer

Ghassemieh

Gillespie

et al. 2017

Respiratory Medicine

Self Cite

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“…Additionally, stakeholders’ interests may change over time. In one study, the results of pre-workshop and final workshop voting often differed, suggesting that prioritization efforts relying solely on requests for topics from stakeholder groups without in-person discussion may provide different research priorities (14). Thus, efforts should be made to audit the evolving nature of stakeholders’ expectations and preferences through structured methods.…”

Section: Identify Stakeholdersmentioning

confidence: 99%

Project Stakeholder Management in the Clinical Research Environment: How to Do it Right

et al. 2015

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This review introduces a conceptual framework for understanding stakeholder management (ShM) in the clinical and community-based research environment. In recent years, an evolution in practice has occurred in many applicants for public and non-governmental funding of public health research in hospital settings. Community health research projects are inherently complex, have sought to involve patients and other stakeholders in the center of the research process. Substantial evidence has now been provided that stakeholder involvement is essential for management effectiveness in clinical research. Feedback from stakeholders has critical value for research managers inasmuch as it alerts them to the social, environmental, and ethical implications of research activities. Additionally, those who are directly affected by program development and clinical research, the patients, their families, and others, almost universally have a strong motivation to be involved in the planning and execution of new program changes. The current overview introduces a conceptual framework for ShM in the clinical research environment and offers practical suggestions for fostering meaningful stakeholder engagement. The fifth edition of PMBOK® of the Project Management Institute, has served as basis for many of the suggested guidelines that are put forward in this article.

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“…41 The PPRNs are expected to elicit research questions from their members. 42 It will be a challenge to ensure that the prioritization process for research questions is accessible to people with a wide range of educational backgrounds and expertise.…”

Section: Engaging Patients In Prioritizing Participating In and Dismentioning

confidence: 99%

Patient-Powered Research Networks Aim To Improve Patient Care And Health Research

et al. 2014

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The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patient-powered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and cost-effectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health.

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Stakeholder Priorities for Comparative Effectiveness Research in Chronic Obstructive Pulmonary Disease

Cited by 37 publications

References 12 publications

Patient characteristics associated with poor inhaler technique among a cohort of patients with COPD

Patient characteristics associated with poor inhaler technique among a cohort of patients with COPD

Project Stakeholder Management in the Clinical Research Environment: How to Do it Right

Patient-Powered Research Networks Aim To Improve Patient Care And Health Research

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