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

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      1 , 1 , 2 , 3
      ERJ Open Research
      European Respiratory Society

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          Abstract

          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].

          Abstract

          Social media and research registries effectively reach diverse subgroups of patients with obstructive lung conditions. Patient co-created mail and e-mail pre-notifications that precede a formal e-mail invitation can enhance enrolment in online research. http://ow.ly/gQQt30o6Bcw

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          Most cited references12

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          Questionnaires in clinical trials: guidelines for optimal design and administration

          A good questionnaire design for a clinical trial will minimise bias and maximise precision in the estimates of treatment effect within budget. Attempts to collect more data than will be analysed may risk reducing recruitment (reducing power) and increasing losses to follow-up (possibly introducing bias). The mode of administration can also impact on the cost, quality and completeness of data collected. There is good evidence for design features that improve data completeness but further research is required to evaluate strategies in clinical trials. Theory-based guidelines for style, appearance, and layout of self-administered questionnaires have been proposed but require evaluation.
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            Costs and Efficiency of Online and Offline Recruitment Methods: A Web-Based Cohort Study

            Background The Internet is widely used to conduct research studies on health issues. Many different methods are used to recruit participants for such studies, but little is known about how various recruitment methods compare in terms of efficiency and costs. Objective The aim of our study was to compare online and offline recruitment methods for Internet-based studies in terms of efficiency (number of recruited participants) and costs per participant. Methods We employed several online and offline recruitment methods to enroll 18- to 45-year-old women in an Internet-based Danish prospective cohort study on fertility. Offline methods included press releases, posters, and flyers. Online methods comprised advertisements placed on five different websites, including Facebook and Netdoktor.dk. We defined seven categories of mutually exclusive recruitment methods and used electronic tracking via unique Uniform Resource Locator (URL) and self-reported data to identify the recruitment method for each participant. For each method, we calculated the average cost per participant and efficiency, that is, the total number of recruited participants. Results We recruited 8252 study participants. Of these, 534 were excluded as they could not be assigned to a specific recruitment method. The final study population included 7724 participants, of whom 803 (10.4%) were recruited by offline methods, 3985 (51.6%) by online methods, 2382 (30.8%) by online methods not initiated by us, and 554 (7.2%) by other methods. Overall, the average cost per participant was €6.22 for online methods initiated by us versus €9.06 for offline methods. Costs per participant ranged from €2.74 to €105.53 for online methods and from €0 to €67.50 for offline methods. Lowest average costs per participant were for those recruited from Netdoktor.dk (€2.99) and from Facebook (€3.44). Conclusions In our Internet-based cohort study, online recruitment methods were superior to offline methods in terms of efficiency (total number of participants enrolled). The average cost per recruited participant was also lower for online than for offline methods, although costs varied greatly among both online and offline recruitment methods. We observed a decrease in the efficiency of some online recruitment methods over time, suggesting that it may be optimal to adopt multiple online methods.
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              Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research

              The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.
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                Author and article information

                Journal
                ERJ Open Res
                ERJ Open Res
                ERJOR
                erjor
                ERJ Open Research
                European Respiratory Society
                2312-0541
                April 2019
                08 April 2019
                : 5
                : 2
                : 00167-2018
                Affiliations
                [1 ]STEM Translational Communication Center, University of Florida, Gainesville, FL, USA
                [2 ]Clinical and Translational Sciences Recruitment Center, University of Florida, Gainesville, FL, USA
                [3 ]Dept of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, Gainesville, FL, USA
                Author notes
                Samantha R. Paige, STEM Translational Communication Center, University of Florida, PO Box 118400, Gainesville FL 32611, USA. E-mail: paigesr190@ 123456ufl.edu
                Article
                00167-2018
                10.1183/23120541.00167-2018
                6452045
                4239cba3-d2e2-40a4-b266-e3c78bed5cb6
                Copyright ©ERS 2019

                This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.

                History
                : 19 September 2018
                : 24 February 2019
                Funding
                Funded by: National Center for Advancing Translational Sciences, open-funder-registry 10.13039/100006108;
                Award ID: ULITR000064
                Funded by: National Heart, Lung, and Blood Institute, open-funder-registry 10.13039/100000050;
                Award ID: F31HL132463
                Award ID: F32HL143938
                Categories
                Original Research Letters
                1

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