Courage starts with showing up and letting ourselves be seen
Brene Brown
Multiple Chronic Conditions Community: People who live with multiple complex, chronic, persistent, painful and often mystifying health conditions are not only resilient but wise due to the expertise gained from managing MCCs and navigating healthcare systems. Comparative Effectiveness Research (CER) can benefit from their expertise.
People who help patients manage their health whether as professional care providers, insurance providers, policy makers, researchers, family or friends who care each day about these patients are also considered members of the MCC community. Building a diverse multi-stakeholder team to design CER studies to improve health outcomes for MCC patients requires a thoughtful and person centered approach to building a research community.
CIRCLE members came together via zoom from 13 U.S. states and across 7 time zones to meet weekly ( and sometimes more ) starting in January of 2021. We used virtual platforms to communicate during and between meetings: google drive and slack (free) and zoom as we collected gems of insight, expertise and wisdom from each other.
Everyone was compensated for their presence. All meetings were facilitated using structured processes for building reciprocal relationships, shared understanding about complex topics, collaboration and appreciation for feedback.
Everyone shared their precious time and energy to respond to questions, collaboratively creating diagrams and capturing over 60 lived experiences stories and dialogues that offer other healthcare learners insight to what matters most when managing MCCs.
The diagrams were analyzed collaboratively, identifying 9 research priorities to support the needs of the MCC community.
On top of busy and challenging lives, we persisted despite a global pandemic and other life challenges to support MCC research and promote the engagement of other stakeholders in partnering for research.
Read CIRCLE Member's Lived Experiences and Dialogues that Informed the Research Priorities
Read CIRCLE's 2021 MCC Research Agenda
Read the Partnering Guide for Research to learn more about the facilitated processes and the steps for partnering on Multi-stakeholder research teams
Compassion is not a relationship between the healer and the wounded. It's a relationship between equals. Only when we know our own darkness well can we be present with the darkness of others. Compassion becomes real when we recognize our shared humanity.
Pema Chodron