Utilizing a patient advocacy-led clinical network to engage diverse, community-based sites in implementation-effectiveness research Journal Article


Authors: Ciupek, A.; Chichester, L. A.; Acharya, R.; Schofield, E.; Criswell, A.; Shelley, D.; King, J. C.; Ostroff, J. S.
Article Title: Utilizing a patient advocacy-led clinical network to engage diverse, community-based sites in implementation-effectiveness research
Abstract: Background: Increased engagement with community-based practices is a promising strategy for increasing clinical trials access of diverse patient populations. In this study we assessed the ability to utilize a patient-advocacy organization led clinical network to engage diverse practices as field sites for clinical research. Methods: GO2 for Lung Cancer led recruitment efforts of 17 field sites from their Centers of Excellence in Lung Cancer Screening Network for participation in an implementation-effectiveness trial focused on smoking cessation integration into screening programs for lung cancer. Sites were engaged by one of three methods: 1) Pre-Grant submission of letters of support, 2) a non-targeted study information dissemination campaign to network members, and 3) proactive, targeted outreach to specific centers informed by previously submitted network member data. Detailed self-reported information on barriers to participation was collected from centers that declined to join the study. Results: Of 17 total field sites, 16 were recruited via the targeted outreach campaign and 1 via pre-grant letter of support submission. The sites covered 13 states and 4 United States geographic regions, were varied in annual screening volumes and years of screening program experience and were predominantly community-based practices (10 of 17 sites). The most reported reason (by 33% of sites) for declining to participate as a field site was inadequate staffing bandwidth for trial activities. This was especially true in community-based programs among which it was reported by 45% as a reason for declining. Conclusions: Our results suggest that this model of field site recruitment leveraging an existing partnership between an academic research team and an informal clinical network maintained by a disease-specific patient advocacy organization can result in engagement of diverse, community-based field sites. Additionally, reported barriers to participation by sites indicate that solutions centered around providing additional resources to enable greater capacity for site staff may increase community-practice participation in research. © The Author(s) 2024.
Keywords: patient selection; united states; organization and management; lung neoplasms; smoking cessation; lung tumor; early detection of cancer; clinical trials; community care; community networks; procedures; patient advocacy; cancer; humans; human; early cancer diagnosis; field sites
Journal Title: BMC Health Services Research
Volume: 24
ISSN: 1472-6963
Publisher: BioMed Central Ltd.  
Date Published: 2024-08-05
Start Page: 891
Language: English
DOI: 10.1186/s12913-024-11376-3
PUBMED: 39103790
PROVIDER: scopus
PMCID: PMC11299353
DOI/URL:
Notes: Article -- MSK Cancer Center Support Grant (P30 CA008748) acknowledged in PDF -- Source: Scopus
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  1. Jamie S Ostroff
    344 Ostroff
  2. Elizabeth A Schofield
    163 Schofield