What We're Doing

CREATING & CONNECTING NETWORKS


Coalition of Networks

Overview

A national network is absolutely essential to advance maternal and child health because individual centers have too few patients with any given condition or adverse outcome to conduct adequately powered clinical studies over reasonable time periods. For example, in all of Canada, each year cancer presents in 850 children compared to 177,800 adults; 12,795 children have diabetes compared to 1,841,527 adults; and 27,483 children live with arthritis compared to 4,451,557 adults. Cerebral palsy, one of the most serious adverse outcomes of pregnancy, occurs at rates of 2-2.5/1000 live births with ~800 cases annually in Canada. Compared to the common disorders affecting adults, maternal and child health issues are typically not considered in provincial health planning. MICYRN is leveraging the power of a collective “strength in numbers” through the creation of a Coalition of Networks to heighten attention to maternal and child health issues, to leverage opportunities, and to address key issues affecting the conduct of maternal infant child & youth health research across Canada and beyond.

Drivers
  1. Challenges for research and evaluation of care: Most pediatric disorders are rare and each center has too few children with any given condition or adverse outcome to conduct adequately powered clinical studies over reasonable time periods;
  2. Need to surmount interprovincial boundaries: In the absence of networks it is difficult to conduct statistically significant studies across the Canadian provinces because of the lack of standardization of care practices and clinical information collection;
  3. Opportunity to capitalize on the potential: Perinatal and pediatric networks make substantive impacts on health care but are impeded by limited support, project to project funding, system inefficiencies, and lack of infrastructure. Networks work in specialty silos with few opportunities to share experiences;
  4. Value added: A ‘network of networks' provides a multi-pronged approach for faster and broader impact, brings economies of scale, accelerates exchange of innovations and strategies between individual networks, and reduces risk of investment in a single team that may not be able to sustain productivity, relationships, or leadership;
Approach
  1. Establish affiliation agreements between MICYRN and practice-based networks and research teams to set a formal relationship and obligations for both parties;
  2. Provide opportunities for network/leaders to interact, identify shared interests, exchange strategies and best practices to promote efficient and effective network research, and explore opportunities for cross-network collaboration;
  3. Use input from the Coalition to set priorities and action plans;
  4. Develop strategies to raise the profile of practice-based networks and emphasize their contributions to evaluating and continuously improving health and health care of their patient populations;
  5. Establish international partnerships with other network coalitions;
Accomplishments
  1. Over 20 practice-based networks collaborating with MICYRN through formal affiliation agreements ;
  2. Qualification as a category 1 network, and member of the Coordinating Group, of the European Network for Pediatric Research of the European Medicines Agency (Enpr-EMA);
  3. Partnership with the American Academy of Pediatrics and annual contribution to NIH-sponsored Networking Workshops (PI Dr. Mort Wasserman, Director, Pediatric Research in Office Settings);
Workshops
  1. Sustaining Networks, October 2012; Presentations, October 2012;