Community-Engagement Strategies of the Developmental Disabilities Practice-based Research Network (DD-PBRN)

Abstract

There is often a rich but untold history of events that occurred and relationships that formed prior to the launching of a practice-based research network (PBRN.) This is particularly the case in PBRNs that are community-based and comprised of partnerships outside of the health care system. In this article we summarize an organizational "prenatal history" prior to the birth of a PBRN devoted to persons with developmental disabilities. Using a case study approach, this article describes the historical events that preceded and fostered the evolution of this PBRN and contrasts how the processes leading to the creation of this multi-stakeholder community-based PBRN differ from those of typical academic-clinical practice PBRNs. We propose potential advantages and complexities inherent to this newest iteration of PBRNs.

A Review of 50-Years of International Literature on the Internal Environment of Building Practice-Based Research Networks (PBRNs)

“…Competing agenda was indicated by statements stressing that practitioner priorities were important. 9,35,96,111,112,122,[170][171][172] In some publications, we also found information about leadership processes for cocreating the research agenda, 81,83,86,99,110,125,132,173 data-driven research, 21,90,153 evidence reviews, 47,72,130 and the ranking of project ideas based on network priorities. 35,99,110,115,132 Networks reported challenges when there were gaps between the interests of research funders and PBRN stakeholders, including divergence between the goals of granting agencies and interests of PBRNs.…”

“…51,52,[60][61][62][63][64][65][66][67][68][69][70][71][72][73][74][75] Later-generation PBRNs demonstrated more specific goals at their establishment, which defined their aims and partnerships. [79][80][81][82][83] We present PBRN goals and aims in Appendix Table 2.…”

“…Such approaches created a solid foundation and strong incentive for PBRN research. 39,66,67,69,78,81,82,86,99,105,108,[110][111][112][113][114][115][116][117][118] .…”

“…However, in some cases, professional organizations played this pivotal role. 46,84,120,124,144,[158][159][160] Some PBRNs were affiliated with research institutes, 47,76,158,161 some developed as community-based associations, 81,107,110 in 1 case, without academic affiliation. 111 Other PBRNs had more than 1 linkage, 23,75,90,108,126 of which 1 was a HIT vendor.…”

Practice-based Research Networks at the Crossroads of Research Translation

“…Although the trial did not show significant differences between groups, the findings will inform a future, more optimally powered study. Tyler and Werner 9 share a distinct "prenatal history" of a newly developing community-based PBRN that focuses on developmental disabilities, demonstrating how CTSAfunded shared resources can energize and involve the larger community in practice-based research. Although best practices for handling laboratory test results in primary care have been identified before, 10 West et al 11 revisit this topic in the current environment of electronic tracking systems and compare practices with and without electronic health records (EHRs).…”