engaging patient partners in the research ...engaging patient partners in the research process...
TRANSCRIPT
ENGAGING PATIENT PARTNERSIN THE RESEARCH PROCESS
Inborn Errors of Metabolism Collaborative Stakeholder Network
Patient Partner Webinar #4How to be Effective in Meetings
Outline
• Questions and Concerns• Characteristics of
Effective Meetings• The Purpose of Meetings• Prepare, Participate,
and Reflect• Speak up! The Patient
Voice• IBEMCSN Governance
Document • October Meeting
Objectives• Address questions and
concerns• Discuss the characteristics of
an effective meeting• Understand the purpose of
meetings, the rules of meetings, and the decision-making processes of meetings
• Gain insight into how to be an effective meeting participant: Prepare, Participate and Reflect
• Highlight the importance of the patient voice being heard
• Learn about the IBEMCSN Governance Document
• Discuss October Meeting
What are the PCORI engagement principles?
We’ve all been there…….
What are the characteristics of a well-run meeting?
The Purpose of Meetings
Task Oriented People Oriented
• The business of the organization is done in meetings
• Needs of people in groups
Good meetings don’t just happen.
Prepare Participate Reflect
Prepare• Read through the
materials, ask questions
• Communicate any needs you have
• Know what you want to get out of the meeting
• Know the rules of the meeting
• Understand the decision-makingprocess of the group
Can be formal, or informal
Participate• Active listening• Contributing
thoughts and ideas• Maintain a positive
presence• Leading, supporting
Reflect• What went well?• What could I have
done differently?• What do I need to
follow up on?• Was the patient
voice represented?
VOICE
alues and Beliefs
pinions & Preferences
nformation known & needed
oncerns & needs
motions
From http://www.patientsvoice.com/patients-voice
Rules of the Meeting
Decision-making process of the Group
IBEMCSN
IBEMCSN Governance Document
IBEMCSN Governance DocumentRoles and Responsibilities of Patient Partners:
• Actively participates in webinars and in-person meetings• Help identify gaps in current knowledge regarding the
management of PKU• Identify outcomes important to patients and caregivers• Suggest and help develop ideas for patient centered
outcomes research studies• Participate in the development of grant proposals for
patient centered outcomes research
Decision MakingDecisions about administrative activities, such as scheduling webinars and meetings, will be made by project leadership with the input of patient partners and other stakeholder members. . .
Decisions surrounding all other aspects of the project including recommendations of research topics, study designs, important outcomes, and dissemination plans will be made in collaboration with all partners.
Changes in Governance
The IBEMCSN will operate as a living entity. As the group matures, it is possible that modifications to the governance document will be required. At any time during the project, any member of the IBEMCSN may point out a need or desire for a change in the governance document. At such time, the leadership team will arrange a group discussion around the proposed changes and whether or not they should b adopted.
IBEMCSN October Meeting• October 17-18, 2017• Lansing, MI
• Airports• Hotel• Meeting Agenda• Reimbursements/ Stipends
Questions? Comments? Concerns?
