Soliciting views of various communities on health research: a prelude to engagement in specific research projects

Abstract

Background Members of the public are increasingly engaged in health-service and biomedical research and provide input into the content of research, design and data sharing. As there is variation among different communities on how research is perceived, to engage all sectors of the general public research institutions need to customize their approach. Objective This paper explores how research institutions and community leaders can partner to determine the best ways to engage different sectors of the public in research. Design Following a literature review, a research institution engaged with four different sectors of the public through their respective representative community-based organizations (CBOs) by interviews with leaders, community member focus groups and a joint project. Setting San Diego and Imperial Counties, California, United States of America (USA). Conclusion Before embarking on more specific research projects, investigators can gain valuable insights about different communities’ attitudes to, and understanding of, health services and biomedical research by interacting directly with members of the community, collaborating with community leaders, and jointly identifying steps of engagement tailored to the community.

A systematic review of components of community-based organisation engagement

“…The majority of studies ( n = 13) in this review were case studies. The remaining studies included quantitative design (Bloom et al., ; Chandra et al., ; Geist, ; Glik et al., ; Goytia et al., ; Patterson et al., ); qualitative design (Boutain & McNees, ; Burkhalter et al., ; Collignon, Men, & Tan, ; Honeycutt et al., ; Johnson et al., ; Radermacher, Karunarathna, Grace, & Feldman, ; Taras et al., ); systematic review (Frew et al., ); and mixed‐method design (Houston et al., ; Kakietek et al., ; Kelaher et al., ; Laborde, Brannock, Breland‐Noble, & Parrish, ; Riehman et al., ).…”

“…All the quantitative and qualitative studies scored 8 and above with the CASP tools. Two qualitative studies met all the CASP tool's criteria (Boutain & McNees, ; Taras et al., ). The other qualitative studies lost points for the absence of data analysis process and study limitations (Collignon et al., ; Honeycutt et al., ; Johnson et al., ; Radermacher et al., ).…”

“…Identifying the need for a partnership enables CBOs to be actively involved in selecting best approaches to achieve the goals of a research project, and promotes successful partnerships (Akintobi et al., ; Bloom et al., ; McFarlane et al., ). CBOs can identify the appropriate participants; determine effective means of accessibility; and assist in the development of assessment tools and data collection methods (Frew et al., ; Geist, ; Goytia et al., ; Honeycutt et al., ; Radermacher et al., ; Taras et al., ).…”

“…Another important aspect of partnership dynamics is trust between CBOs and stakeholders (Akintobi et al., ; Bloom et al., ; Caldwell et al., ; Laborde et al., ; Taras et al., ; Tisnado et al., ). Trust in partnerships can be built through effective, regular and bidirectional communication through means like: regular meetings, conference calls, webinars and online dialogue (Akintobi et al., ; Bloom et al., ; Caldwell et al., ; Collignon et al., ; Darling et al., ; Glik et al., ; Honeycutt et al., ; Houston et al., ; Johnson et al., ; Napoles et al., ; Singer et al., ; Tisnado et al., ).…”

“…The majority of studies (n = 13) in this review were case studies. The remaining studies included quantitative design (Bloom et al, 2009;Chandra et al, 2013;Geist, 2010;Glik et al, 2014;Goytia et al, 2013;Patterson et al, 2011); qualitative design (Boutain & McNees, 2013;Burkhalter et al, 2013;Collignon, Men, & Tan, 2001;Honeycutt et al, 2015;Johnson et al, 2006;Radermacher, Karunarathna, Grace, & Feldman, 2011;Taras et al, 2015); systematic review (Frew et al, 2014); and mixed-method design (Houston et al, 2002;Kakietek et al, 2013;Kelaher et al, 2014 High variability was found during critical appraisal of case studies, with scores ranging from 1 to 10 (Akintobi et al, 2012;Caldwell et al, 2015;Chaskin, Goerge, Skyles, & Guiltinan, 2006;Darling et al, 2015;LoConte, Weeth-Feinstein, Conlon, & Scott, 2013;McFarlane, Kahili, & Johnson, 2014;Napoles et al, 2014;Panapasa et al, 2012;Singer et al, 2015). Five studies met all the criteria (Chaskin et al, 2006;Darling et al, 2015;Gainforth, Latimer-Cheung, Moore, Athanasopoulos, & Martin Ginis, 2015;Jewett-Tennant et al, 2016;Woodruff et al, 2016).…”