Methods
How were these research priorities created?
How were these research priorities created?
First Step: We engaged a small multi-stakeholder planning team to review our patient partner guide that had been originally used for a nationwide research intervention on Integrating Behavioral Health and Primary Care (IBH-PC). The Patient Partner guide was designed to support primary care quality improvement teams who chose to include patients as their quality improvement team members and partners. Together, we clarified our collective vision, and established our mission to engage future partners from within the Multiple Chronic Conditions (MCC) community to promote partnering for MCC research. We sought the agreement of former research IBH-PC study survey respondent patient and clinicians in their final research study survey by asking them if we could contact them again for future projects. Meanwhile, while waiting for their responses, we collaboratively developed our proposal to form CIRCLE and received funding for a PCORI Eugene Washington Engagement Award to adapt and promote the adoption of our partnering guide to become a partnering guide for multi-stakeholder research teams.
First Step: We engaged a small multi-stakeholder planning team to review our patient partner guide that had been originally used for a nationwide research intervention on Integrating Behavioral Health and Primary Care (IBH-PC). The Patient Partner guide was designed to support primary care quality improvement teams who chose to include patients as their quality improvement team members and partners. Together, we clarified our collective vision, and established our mission to engage future partners from within the Multiple Chronic Conditions (MCC) community to promote partnering for MCC research. We sought the agreement of former research IBH-PC study survey respondent patient and clinicians in their final research study survey by asking them if we could contact them again for future projects. Meanwhile, while waiting for their responses, we collaboratively developed our proposal to form CIRCLE and received funding for a PCORI Eugene Washington Engagement Award to adapt and promote the adoption of our partnering guide to become a partnering guide for multi-stakeholder research teams.
Second Step: We practiced and adapted our facilitation skills during our meetings by using the tools and processes from the original partnering guide to plan the recruitment, engagement, onboarding and orientation of these future partners from the IBH-PC study's MCC community.
Second Step: We practiced and adapted our facilitation skills during our meetings by using the tools and processes from the original partnering guide to plan the recruitment, engagement, onboarding and orientation of these future partners from the IBH-PC study's MCC community.
Third Step: We invited IBH-PC former patient and clinician survey respondents who had agreed to be contacted again from across 13 states and 7 time zones to join information sessions. After these sessions, we conducted needs assessments and then allowed stakeholder candidates to self select themselves into or out of our project. 59 out of 90 information session attendees chose to join CIRCLE. All CIRCLE members who chose to participate were paid $25 for each meeting they attended or facilitated. 51 of these original attendees remained our partners through all 10 weekly meetings. 18 CIRCLE members continued to volunteer their energy and time after the engagement period ended to help finalize our project deliverables.
Third Step: We invited IBH-PC former patient and clinician survey respondents who had agreed to be contacted again from across 13 states and 7 time zones to join information sessions. After these sessions, we conducted needs assessments and then allowed stakeholder candidates to self select themselves into or out of our project. 59 out of 90 information session attendees chose to join CIRCLE. All CIRCLE members who chose to participate were paid $25 for each meeting they attended or facilitated. 51 of these original attendees remained our partners through all 10 weekly meetings. 18 CIRCLE members continued to volunteer their energy and time after the engagement period ended to help finalize our project deliverables.
Fourth Step: We oriented our new CIRCLE partners to our virtual platforms and our goals by offering training and practice communicating on Slack, Google Drive and Zoom. Using the guides facilitation processes during weekly small group virtual in person sessions, we began to establish reciprocal relationships by listening and learning from our new partners about what matters most to them when being on a team and when managing MCCs.
Fourth Step: We oriented our new CIRCLE partners to our virtual platforms and our goals by offering training and practice communicating on Slack, Google Drive and Zoom. Using the guides facilitation processes during weekly small group virtual in person sessions, we began to establish reciprocal relationships by listening and learning from our new partners about what matters most to them when being on a team and when managing MCCs.
Fifth Step: We adapted our guide as our partners informed us of what was needed to best engage and retain their trust and participation. We redesigned our original plans and goals to match the needs, strengths and desires of our stakeholder community partners.
Fifth Step: We adapted our guide as our partners informed us of what was needed to best engage and retain their trust and participation. We redesigned our original plans and goals to match the needs, strengths and desires of our stakeholder community partners.
Once the Teams were oriented and established, the work consisted of:
Once the Teams were oriented and established, the work consisted of:
-10 weekly, 90 minutes sessions each of our 5 groups began to develop diagrams for a research agenda informed by what mattered most and supported by stories from their lived health and healthcare experiences.
-10 weekly, 90 minutes sessions each of our 5 groups began to develop diagrams for a research agenda informed by what mattered most and supported by stories from their lived health and healthcare experiences.
Trained facilitators ensured that during CIRCLE meetings all ideas, stories and dialogues were heard, affirmed and documented accurately using the newly adapted Partnering for Research Guide's tools and processes.
Trained facilitators ensured that during CIRCLE meetings all ideas, stories and dialogues were heard, affirmed and documented accurately using the newly adapted Partnering for Research Guide's tools and processes.
CIRCLE members participated in the facilitated Affinity Diagramming Process in 5 small teams of~10 people to respond to the following questions:
CIRCLE members participated in the facilitated Affinity Diagramming Process in 5 small teams of~10 people to respond to the following questions:
- What Matters Most When Working as a Team?
- What Matters Most When Managing Multiple Chronic Conditions?
Each group sorted their top 3 responses to each question into similar themed groupings. Each group then collaborated on naming each grouping with a "header theme" that most accurately reflected all ideas in the grouping of responses to the question.
Each group sorted their top 3 responses to each question into similar themed groupings. Each group then collaborated on naming each grouping with a "header theme" that most accurately reflected all ideas in the grouping of responses to the question.
Next, our groups participated in the facilitation of the Sharing Lived Experiences Process to describe lived experiences relating to the themes and allow others to reflect on what was shared to deepen understanding. These stories and dialogues were captured in templates using 6 prompts to reveal specific details and context.
Next, our groups participated in the facilitation of the Sharing Lived Experiences Process to describe lived experiences relating to the themes and allow others to reflect on what was shared to deepen understanding. These stories and dialogues were captured in templates using 6 prompts to reveal specific details and context.
In between team meetings, our virtual online asynchronous method of communication was available to all members of CIRCLE. Members were provided any training and practice in the technology skills needed to participate on SLACK (Searchable Log of All Communication and Knowledge). Conversations could be 1 on 1 private messages, small group messages or shared with "All Hands" on the project. Some discussions related to the healthcare and research topics being discussed during meetings and others helped with supporting participation needs as well as in the development of trust and personal connections.
In between team meetings, our virtual online asynchronous method of communication was available to all members of CIRCLE. Members were provided any training and practice in the technology skills needed to participate on SLACK (Searchable Log of All Communication and Knowledge). Conversations could be 1 on 1 private messages, small group messages or shared with "All Hands" on the project. Some discussions related to the healthcare and research topics being discussed during meetings and others helped with supporting participation needs as well as in the development of trust and personal connections.
Once specific needs and insight of CIRCLE members were revealed via diagrams and stories, each group considered the diagrams again to determine which of the "header themes" were "drivers of change" and should be studied first to support the needs of the MCC community.
Once specific needs and insight of CIRCLE members were revealed via diagrams and stories, each group considered the diagrams again to determine which of the "header themes" were "drivers of change" and should be studied first to support the needs of the MCC community.
After all 5 groups finished their 10 weekly meetings, a small team of CIRCLE members volunteered representing all 5 groups and convened to reflect on all 28 "headers" to once again use the affinity diagram process to:
After all 5 groups finished their 10 weekly meetings, a small team of CIRCLE members volunteered representing all 5 groups and convened to reflect on all 28 "headers" to once again use the affinity diagram process to:
- Sort the 28 "headers" into similar themes
- Give each theme a new "header"
- Frame these 11 "headers" into questions
- Use a redcap survey to rank the 9 research questions in order of importance to form a prioritized list of questions
Along with these successful results, this successful engagement of our partners from the MCC community led us to unplanned extra value: (see link below)
Along with these successful results, this successful engagement of our partners from the MCC community led us to unplanned extra value: (see link below)
