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?

CONTACT INFORMATION

Jane Pilditchjpilditc@mphi.org517-324-8391

Mat Edickmjedick@mphi.org517-624-3663