Community-engagement strategies of the developmental disabilities practice-based research network (DD-PBRN)

Area of Science:

• Health Services Research
• Community-Based Participatory Research
• Developmental Disabilities Research

Background:

• Practice-based research networks (PBRNs) often have un documented histories.
• Community-based PBRNs with external partnerships have unique developmental paths.
• Understanding the pre-launch phase is crucial for PBRN success.

Purpose of the Study:

• To describe the organizational history preceding the establishment of a PBRN for individuals with developmental disabilities.
• To contrast the formation process of this community-based, multistakeholder PBRN with traditional academic/clinical PBRNs.
• To identify potential benefits and challenges of this novel PBRN model.

Main Methods:

• Case study approach detailing historical events and relationship development.
• Comparative analysis of PBRN formation processes.
• Qualitative exploration of organizational evolution.

Main Results:

• The PBRN's development involved significant pre-launch activities and relationship building outside traditional healthcare structures.
• Formation processes differed notably from typical academic/clinical PBRNs, emphasizing community partnerships.
• The multistakeholder, community-based model presents distinct advantages and complexities.

Conclusions:

• The 'prenatal history' of community-based PBRNs is vital for understanding their unique structure and function.
• This developmental approach may foster greater inclusivity and relevance for specific populations, such as those with developmental disabilities.
• Further research is needed to optimize the advantages and mitigate the complexities of these emergent PBRN models.