CP-NET Stakeholder Advisory Group

What it is? Who are the members? What does the group do? How to get involved?

CP-NET has developed the CP-NET Stakeholder Advisory Group to support CP-NET research priorities and help to lead future directions in CP Research.

Overarching Goal: to provide a link between CP-NET researchers and stakeholders to facilitate bi-directional communication around CP-NET activities

Stakeholder Membership include: (List may not be exhaustive)

• Individuals with CP
• Parents/Family of persons with CP
• Federation for Cerebral Palsy (OFCP)
• Ontario Association of Children’s Rehabilitation Services (OACRS)
• Holland Bloorview Kids Rehabilitation Hospital
• CanChild Centre for Childhood Disability Research

Stakeholder Group Activities include: (in no implied order of importance)

• Reviewing materials for CP-NET website (including website content, resources, ensuring readability of study results before dissemination to a wide audience)
• As research findings evolve, help to advise on communication strategies to facilitate meaningful Knowledge Translation to wider stakeholder group across province
• Periodically provide a stakeholder (i.e., parent/family perspective) on CP-NET activities (e.g., co-present at meetings with CP-NET team, media interviews, etc)
• Assist in developing ongoing and future research directions by communicating research priorities from stakeholders’ perspectives. Activities may include meeting with researchers about possible research questions, reviewing grant proposals, etc.
• Acting as formal ‘Knowledge Users’ in grant applications by CP-NET scientists.
• Provide suggestions from stakeholders’ perspectives on topics that require credible information or research
• Promote CP-NET, CP-NET activities and research projects (including opportunities for people to engage in research), and the CP-NET website, within stakeholders’ own networks (e.g., via blogs, websites, groups, peers, etc.). This will help to raise awareness of CP-NET initiatives in an effort to assist in recruitment for research studies and for uptake of credible information from CP-NET Website
• Help to plan an annual CP-NET Family Forum

CP-NET’s Potential Contributions to the Stakeholder Group

• Develop and maintain a CP-NET Website accessible to everyone interested:
• Provide overview summaries of research team/investigators, research project activity, and research findings including lay summaries of manuscripts and Knowledge Translation products developed from the research projects
• Provide evidence-informed resources
• Maintain a section for recruitment to current research studies, and inform people about how they can get involved in the research and in the Stakeholder Group
• - Provide a mechanism for families to pose CP-related questions and converse with other families who have a child with CP
• Provide links to other trustworthy websites and resources, and become a resource hub of credible information
• Host & support an annual CP Education/Family Form
• Host & support regular stakeholder group meetings and forums