Congenital CMV infection is a significant part of our lives and work. After so many have joined together as advocates, now is the time to create a strong network for our CMV community to support collaboration and accelerate progress toward increasing CMV awareness and research.

This session will provide an engaging, fun, and interactive place to start building a new congenital CMV network and identify priorities for patient-centered research. We will be led by a professional team of facilitators to ensure a comprehensive, inclusive, and efficient process.

The primary goals of the Forum are to:

1. Bring stakeholders together to build a collaborative partnership
2. Generate ideas and approach to creating a sustainable congenital CMV network, including a guidance infrastructure
3. Establish a plan for compiling a prioritized list of CMV research questions

The "charrette" model of community engagement

The Forum will follow the "charrette" model of community engagement, an approach that originated in the field of design, particularly architecture. The term derives from the French charrette, or "cart", which refers to a 19th century practice at L'École des Beaux Arts whereby a cart was used to collect final projects at deadline while frenzied students finished their work. According to the Oxford English Dictionary, a charrette is "a meeting in which all stakeholders in a project attempt to resolve conflicts and map solutions."

In general, the charrette process implies an intense collaborative effort based on a shared vision, which focuses on generating and implementing solutions to a challenge that impacts the participants. A key component of the model is a facilitator with expertise in the charrette process and human-centered design, who ensures that all viewpoints are assimilated, enables efficient decision-making and conflict resolution, and serves as a catalyst for the community to achieve the intended goals of the meeting. A team from CTA Architects Engineers that includes architect James Foster and staff members Ashleigh Powell and Jordan Dominquez will facilitate the session at their office. Their group has broad experience with the charrette design model and a strong dedication to community outreach.

The Congenital CMV Community Engagement Forum will be funded primarily with a grant from the Patient-Centered Outcomes Research Institute (PCORI). PCORI is an independent nonprofit, nongovernmental organization that was authorized by Congress in 2010. Their mandate is to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions. Specifically, they fund comparative clinical effectiveness research (CER), and they take an approach called Patient-Centered Outcomes Research (PCOR), which addresses the questions and concerns most relevant to patients.

Their vision is that patients and the public have information they can use to make decisions that reflect their desired health outcomes.

Their mission is to help people make informed healthcare decisions, and improve healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.

Toward these ends, the PCORI Pipeline to Proposal (P2P) Initiative supports the development of CER research ideas and proposals designed by partnerships of patients, caregivers, and other key stakeholders. Early stage Tier I awards fund the building of partnerships and expansion of skills necessary to develop a patient-centered comparative-effectiveness research project, and the generation of CER ideas that address the health issue of interest to those in the partnership.

A P2P Tier I grant was awarded to Dr. Laura Gibson for the period 8/1/16 – 4/30/17. This grant will serve as a framework to guide the community engagement process, especially during the early stages, although it need not limit the ideas and efforts of the Congenital CMV community to develop a collaborative network and increase CMV awareness and research. The PCORI P2P Tier I award will support the Forum as well as subsequent activities to collate and disseminate information, solicit additional participation, and begin to plan and implement action items identified at the session. This work will serve as the foundation for Tier II and III awards that support longer term strategies to generate patient-centered outcomes research projects for congenital CMV infection.

The goals of this P2P Tier I grant over the 9-month period are to:

1. Develop a collaborative Congenital CMV network. Basic elements of the network will be established, such as a name, legal status (e.g. non-profit), mission and vision, website, and mechanisms of inclusion, communication, and promotion (e.g. listserv or blog). In particular, the network can serve as a foundation for research study design, participation, and collaboration. Fundamental principles of the network will include accessibility via many entry points, diversity through inclusion of a broad variety of stakeholders (e.g. community members, healthcare providers, researchers, and policy makers) and sustainability to ensure progress over the long term, particularly in areas that require sustained efforts (e.g. FDA-approved interventions or public health legislation).
2. Establish a governance infrastructure that will support growth and sustainability of the congenital CMV network. Like the network as a whole, fundamental principles of this body will include accessibility, diversity, and sustainability, but also transparency and service to participants. Basic elements of the infrastructure will be established, such as name, membership selection process and terms limits, role in strategy management and planning, and guidelines for maintaining an equitable relationship among partners in the network.
3. Compile a comprehensive and prioritized list of questions and ideas for comparative-effectiveness research that address issues relevant to individuals with congenital CMV infection and their families. Diverse experiences and viewpoints will inform the dialogue that leads to consensus about research questions and priorities.