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

Carl V. Tyler; James J. Werner

doi:10.3122/jabfm.2014.06.140022

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Figure 1.
Stakeholders represented in the Developmental Disabilities (DD) Practice-Based Research Network.
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Figure 2.
Comparing development of “first-generation” practice-based research networks (PBRNs) with that of the Developmental Disabilities PBRN.

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Table 1. Timeline of Collaborative Activities and Participants, Organized by Representative Stakeholder Groups

Collaboration (Years)	Training Grant (2009–2011)	Learning Collaborative (2012–2013)	DD-PBRN (2013 to present)
Stakeholder Group
Patient	Self-advocates Family members	Self-advocates Family members	Self-advocates Family members
Advocacy	The Arc of Greater Cleveland Upside of Downs	The Arc of Greater Cleveland Upside of Downs United Cerebral Palsy	The Arc of Greater Cleveland Upside of Downs United Cerebral Palsy Milestones (Autism)
Service	Residential service providers (Welcome House, Help Foundation) Disabilities professionals Cuyahoga County board of DD	Residential service providers (Welcome House, Help Foundation) Disabilities professionals Cuyahoga County board of DD	Residential service providers (Welcome House, Help Foundation, Koinonia, Mentor Network, ViaQuest) Disabilities professionals Cuyahoga County board of DD
Health care	Nurses Family physicians Residency faculty Medical school faculty	Nurses Family physicians Internists Pediatrician Speech therapist	Nurses Family physicians Internists Pediatrician Speech therapist Social workers

DD, developmental disabilities; PBRN, practice-based research network.

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Table 2. Characteristics of “First-Generation” Primary Care Practice-based Research Networks (PBRNs) Compared With the Developmental Disabilities (DD) PBRN

“First Generation” Primary Care PBRNs³⁸	DD-PBRN
“PBRNs capture health care events that reflect the selection and observer bias that characterize primary care in community-based patient populations.”	The DD-PBRN intends to capture phenomena relevant to primary health care of people with DD that may precede, occur during, or occur subsequent to actual health care events. Selection and observer biases vary according to specific networks and participants.
“PBRNs provide access to the practice experience and care provided by full-time primary care clinicians.”	The DD-PBRN intends to access the experience of 3 stakeholder groups: primary care clinicians, their patients, and other persons in the community who are relevant to the primary health care of the persons with DD (ie, representatives of the advocacy and service communities)
“PBRNs focus their activities on practice-relevant research questions, apply appropriate, multi-method research design, and generally avoid the tendency to permit research methods to define the question.”	The DD-PBRN intends to focus its activities on the primary health care of people with DD and applies appropriate multimethod research designs that vary according to the research questions proposed; studies vary in site, target stakeholder group, and stakeholder perspectives.
“PBRNs strive for the systematic involvement of network clinicians in defining the research questions, participating in the study design, and interpreting study results.”	The DD-PBRN intends to strive for the systematic involvement of primary care clinicians, people with DD, and other stakeholders in the community who are relevant to the primary health care of people with DD in defining research questions, participating in the study design, and interpreting study results.