My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform

Children with complex medical conditions (CCMCs) require extensive care resulting in high levels of hospital and emergency room utilization, and a broad need for healthcare services, resources, and technology. Using a combined Grounded Theory and Community-Based Participatory Research (CBPR) approach, we aimed to discover the resource-related needs of CCMC families, identify ways to reduce hospital utilization, and increase their access to clinical and non-clinical resources. Study findings included the need for improved access to various tools, resources, and services; and the concept of a ‘one-stop-shop’, easy to use, networking tool specific to the disabled community. To provide the community with a tangible solution to the study findings, the focus expanded beyond academia, however the participatory methodology remained. As a result, My Needs Network emerged as a free, easy-to-use, web platform and networking service the disabled community ‘owns’. To turn the study results into a tangible service and web platform, CBPR continued as the guiding principle in all post-research phases. CBPR was applied in web platform design, development, and validation; business model build and validation; and strategic planning, marketing strategy, and sustainability design. Today with My Needs Network live, CBPR methods drives realistic long term sustainability design, and ensures for consistent, accurate reflection of the community’s needs in a web based tool. This paper provides an overview of how CBPR can be simultaneously applied toward multiple goals and objectives across industries while maintaining clarity on the original concept and purpose. Moreover, this paper is an example of how CBPR provides a tangible, sustainable and fluid foundation with consistent holistic reflection of the community’s needs.