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) approac...

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Main Authors: Mark Fafard, Katryne Lukens-Bull, Meredith Pinard, Maria Bautista
Format: Article
Language:English
Published: Specialty Publications 2025-05-01
Series:Journal of Participatory Research Methods
Online Access:https://jprm.scholasticahq.com/article/131829-my-needs-network-how-a-community-based-participatory-research-process-morphed-into-a-sustainable-community-driven-networking-platform
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author Mark Fafard
Katryne Lukens-Bull
Meredith Pinard
Maria Bautista
author_facet Mark Fafard
Katryne Lukens-Bull
Meredith Pinard
Maria Bautista
author_sort Mark Fafard
collection DOAJ
description 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.
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spelling doaj-art-4da4347e65d6492fa0ccd9b8fec14c482025-08-20T02:43:54ZengSpecialty PublicationsJournal of Participatory Research Methods2688-02612025-05-0162My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking PlatformMark FafardKatryne Lukens-BullMeredith PinardMaria BautistaChildren 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.https://jprm.scholasticahq.com/article/131829-my-needs-network-how-a-community-based-participatory-research-process-morphed-into-a-sustainable-community-driven-networking-platform
spellingShingle Mark Fafard
Katryne Lukens-Bull
Meredith Pinard
Maria Bautista
My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
Journal of Participatory Research Methods
title My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
title_full My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
title_fullStr My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
title_full_unstemmed My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
title_short My Needs Network: How a Community-Based Participatory Research Process Morphed Into a Sustainable Community-Driven Networking Platform
title_sort my needs network how a community based participatory research process morphed into a sustainable community driven networking platform
url https://jprm.scholasticahq.com/article/131829-my-needs-network-how-a-community-based-participatory-research-process-morphed-into-a-sustainable-community-driven-networking-platform
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