Research CP

Participation in Research CP educational series and workshop

Research CP is a PCORI funded educational series and workshop designed to create a patient-centered research agenda for CP.

Participants may be involved at two levels:

1) Open to the public: Viewing of webinars, survey participation and access to web streaming of the workshop.
2) By application: In person participation in the workshop that will include compensation and travel reimbursement* for the time spent at the workshop in Chicago.

Each phase of the series will provide benefits to the participants regardless of whether they participate in the in-person meeting. Due to budget, space and process constraints, we will have space for only 32 in-person participants at the workshop. There will be a simple application process (5-10-minute survey) for the in-person meeting to ensure we have a diverse representation from the community based on factors such as age, race, and functional capabilities as well as a diversity of clinical disciplines. Applications will be due on March 15th and selected applicants will be invited to the workshop by April 1st.

• The webinar series will provide educational information about key areas that impact patient outcomes through research. Community participants and providers will benefit from learning new approaches to clinical research, quality improvement and using patient-centered research outcome measures. These webinars will help patients and community members better understand how they can shape research to be more meaningful to patients and their families. Clinicians will learn about tools to involve patients and community members in their efforts to improve patient care and outcomes. The webinar series will consist of five 20 to 40 minutes of presentations plus 20 minutes of questions and answers.
• The research priorities survey will allow everyone – patients, community members, providers and researchers – to voice their opinion about what questions and outcomes are most important. This survey will provide the foundation for activities planned during the Research CP workshop in Chicago in June 2017. The survey will be conducted in May 2017 and will only take 5-10 minutes to complete.
• The Research CP workshop will allow participants to engage in the prioritizing of the research agenda from the raw input of the survey. This 1.5-day meeting will lead participants through a professionally facilitated process to evaluate and rank the survey results using input from the public and the meeting attendees. The meeting will result in a broadly disseminated white paper/official summary document of patient-centered research priorities for pursuit by interested researchers and community members.
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