About Us
A Multi-Stakeholder research team is a diverse group of patients, family members, payers, policy makers, clinicians and researchers influencing the outcomes of research by collaborating effectively as research is conducted.
Multiple Chronic Conditions Community members live with or partner with others living with health conditions that are long term, complex and require life long medical and behavioral management skills in order to thrive.
Who we are:
As members of the Multiple Chronic Conditions Community (MCC) we are a nationwide diverse multi-stakeholder team of patients, family members, payers, policy makers, clinicians and researchers caring about and representing our own needs and strengths as well as the needs and strengths of others who live with and manage multiple complex, persistent and often mystifying health conditions.
What we do:
We are partnering for patient centered outcomes research by learning together and collaborating effectively for improved health outcomes and system transformation. We are also helping others who want to learn and engage as members of a multi-stakeholder team while research is conducted.
What we value and envision:
When patient stakeholder needs and strengths are presented by the stakeholders themselves and made the center of the research process from conception to implementation, the outcomes of research are made more accessible and meaningful to patients and clinicians.
Where it all started
During a nationwide research study at the University of Vermont, funded by the Patient Centered Outcomes Research Institute (called PCORI) on Integrating Behavioral Health and Primary Care. (called IBH-PC), an engagement guide was collaboratively written by patients and other research stakeholder advisers to support the inclusion of patients as partners on primary care quality improvement teams.
The IBHPC Patient Partner guide was considered helpful and it was suggested it be adapted to help researchers engage patients and other stakeholders in partnering for research.
The authors of the guide accepted this challenge and formed a Cooperatively Inspired Research Community for Learning and Engagement (called CIRCLE) in 2021. This community grew to over 60 former IBH-PC study participants, patient partners, clinicians and researchers and was funded by PCORI for one year to build capacity for patients, clinicians and other stakeholders to guide multi-stakeholder patient centered research and engagement.
CIRCLE formed on the foundational beliefs that:
Patient centered outcomes research can benefit lives and improve MCC health outcomes.
Reciprocal relationships, collaboration and compassion for self and others transforms systems.
Solutions to the perceived barriers to patient and other stakeholder engagement exist and the tools to address them are accessible to all research teams.
A prerequisite to the use of any tool is the time, curiosity, humility and patience to exercise it fully. With the key ingredients of time, curiosity, humility and patience, the barriers around technology, social inequities, and reciprocal relationships can be removed.
The Partnering Guide for Research may help teams address these barriers and facilitate meaningful outcomes in safe and productive ways.
Where we are from:
The members of CIRCLE came together from 13 U.S. states across 7 time zones from all walks of life, background and cultures. We met via zoom weekly and used free virtual platforms to communicate and collaborate (google drive and slack). Using our guide and adapting it as we grew, we planned, learned and trained together and facilitated our teamwork while establishing, maintaining and sustaining reciprocal relationships. Ultimately we created the new partnering guide for research and collected over 60 lived experience stories and dialogues to form a MCC research agenda of 9 priorities.
Contact Us
Connie van Eeghen-CIRCLE project co-lead and assistant professor University of Vermont, specializing in implementation science, coaching, facilitating and leadership development
Constance.van-Eeghen@med.uvm.edu
Jennifer O'Rourke-Lavoie-CIRCLE project co-lead and lead author of the IBH-PC Patient Partner Guide and the Partnering for Research Guide, IBH-PC study patient partner co-investigator and coordinator of stakeholder engagement
Juvena Hitt-CIRCLE project manager and research specialist at the University of Vermont.