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To inform priority topics, CIRCLE members first answered the question:
To inform priority topics, CIRCLE members first answered the question:
What matters most when managing multiple chronic conditions?
What matters most when managing multiple chronic conditions?
During the 10 weeks in which CIRCLE members convened after first responding to this question, we created diagrams and recorded dialogues in response to further inquiry and reflection of this question. During two final meetings, 9 topics were identified, shaped into questions and ranked (by survey) into level of MCC research priority.
First Priority Topic
First Priority Topic
What aspects of physician and patient communication engenders trust and mutual respect?
What aspects of physician and patient communication engenders trust and mutual respect?
Second Priority Topic
Second Priority Topic
What methods of providing advocates and advocacy improve patient outcomes (where advocacy includes patient, caregivers, family and provider education and practice towards partnerships)?
What methods of providing advocates and advocacy improve patient outcomes (where advocacy includes patient, caregivers, family and provider education and practice towards partnerships)?
Third Priority Topic
Third Priority Topic
How do patient's and providers' experiences of trust and respect impact health outcomes?
How do patient's and providers' experiences of trust and respect impact health outcomes?
Fourth Priority Topic
Fourth Priority Topic
What impact is there of longer visits and different technical modalities of patient encounters on MCC patient and provider health outcomes, patient and provider satisfaction, and overall long term cost outcomes for MCC patients and the larger system?
What impact is there of longer visits and different technical modalities of patient encounters on MCC patient and provider health outcomes, patient and provider satisfaction, and overall long term cost outcomes for MCC patients and the larger system?
Fifth Priority Topic (tied)
Fifth Priority Topic (tied)
How does an interdisciplinary and interprofessional team communication process based on a shared (common) and patient centered knowledge base for decision making and health management affect patient health outcomes
How does an interdisciplinary and interprofessional team communication process based on a shared (common) and patient centered knowledge base for decision making and health management affect patient health outcomes
Fifth Priority Topic (tied)
Fifth Priority Topic (tied)
What is the impact on patient health of a communication system among diverse systems that are part of the MCC patient health experiences?
What is the impact on patient health of a communication system among diverse systems that are part of the MCC patient health experiences?
Seventh Priority Topic
Seventh Priority Topic
Is it true that people with transportation issues are helped by telehealth and other tech modes (wearable monitors, portals) of connecting with providers?
Is it true that people with transportation issues are helped by telehealth and other tech modes (wearable monitors, portals) of connecting with providers?
Eighth Priority Topic
Eighth Priority Topic
How do interprofessional and interdisciplinary teams use their shared understanding as knowledge for decision-making and health management and what are the contextual factors that make a difference?
How do interprofessional and interdisciplinary teams use their shared understanding as knowledge for decision-making and health management and what are the contextual factors that make a difference?
Ninth Priority Topic
Ninth Priority Topic
What are the barriers and facilitators to putting a single universal system of care into place across the continuum of care, including end of life? (for example a universal health records system)
What are the barriers and facilitators to putting a single universal system of care into place across the continuum of care, including end of life? (for example a universal health records system)
The themes that informed these ranked research priorities are listed below. To see CIRCLE member responses to the What Matters Most question please click on the link provided under each group of themes/headers.
Header themes that informed prioritized topics #1, #3:
Header themes that informed prioritized topics #1, #3:
What aspects of physician’s and patient’s communication engenders trust and mutual respect? ( #1)
What aspects of physician’s and patient’s communication engenders trust and mutual respect? ( #1)
How do patients and providers experience trust and how does it impact health outcomes? ( #3)
How do patients and providers experience trust and how does it impact health outcomes? ( #3)
Everything I (patient) has on 1-2 page "resume" (list of allergies, drs., updated routinely by patient)(F,0)
Universal Access to preventative and regular care without repercussion (M,3)
Provide checks and balances for patients and providers when conflicts arise (F,3)
Providers must be supported in questioning their biases, assumptions and subconscious stereotypes about chronic conditions. (F,1)
Listening to and considering the whole person while spending time getting to know the patient and situation because everyone and each situation is unique and different. (M,8)
Not making assumptions (T,0)
MCC Patients are unique and need support to bust assumptions and remove stereotyping in order to influence decision making and build trust (F,4)
Header themes that informed prioritized topic #2:
Header themes that informed prioritized topic #2:
Priority #2: What methods of providing advocates and advocacy improve patient outcomes where advocacy includes patient, caregivers, family and provider education and practice to move towards partnerships?
Priority #2: What methods of providing advocates and advocacy improve patient outcomes where advocacy includes patient, caregivers, family and provider education and practice to move towards partnerships?
Advocacy is a lifelong journey and depends on speaking up (everyone needs an advocate or to be a self advocate) (W,1)
Advocacy-assisted to explain options throughout and after the care process. Patients and parents talked with, not at using many modes of communication that support 2 way learning. (T,2)
Physician, provider, staff humility and respect for the nature of PAIN (R, 2)
Comprehensive normalizing of whole person health (M, 1)
Affective skills that demonstrate active listening and active encouragement of genuine receptive and expressive communication (W,3)
Physicians demonstrate a strong interest and persistent focus on resolving root causes of physical concerns (R,2)
Education from a young age to ask questions and understand the system, self advocacy and reduce pressure on the sick person when they can't advocate for themselves. Advocacy includes patients, providers and family. (M,1)
Header themes that informed prioritized topics #5, #7:
Header themes that informed prioritized topics #5, #7:
Priority #5: How does an interdisciplinary and inter-professional team communication process based on a shared (common) and patient centered knowledge base for decision making and health management affect patient health outcomes? (tied for #5)
Priority #5: How does an interdisciplinary and inter-professional team communication process based on a shared (common) and patient centered knowledge base for decision making and health management affect patient health outcomes? (tied for #5)
Priority #7: How do inter-professional and interdisciplinary teams use their shared understanding as knowledge for decision-making and health management and what are the contextual factors that make a difference? ( #7)
Priority #7: How do inter-professional and interdisciplinary teams use their shared understanding as knowledge for decision-making and health management and what are the contextual factors that make a difference? ( #7)
Priority theme (unranked but deemed similar): How and when do patients and providers determine when they have shared understanding?
Priority theme (unranked but deemed similar): How and when do patients and providers determine when they have shared understanding?
Both physician and patient educated and empowered on the condition and the treatment and practical contingencies needed for working together on an agreed goal. (R,1)
What actually works to educate and/or support providers in implementation of comprehensive interprofessional teamwork for MCC health management (W,3)
Providing a knowledge base for decision making (T,1)
Access to education (R,0)
Header themes that informed prioritized topics #4, #6:
Header themes that informed prioritized topics #4, #6:
Priority #4:What impact is there of longer visits and different technical modalities of patient encounters on MCC patient and provider health outcomes, patient and provider satisfaction, and overall long term cost outcomes for MCC patients and the larger system?
Priority #4:What impact is there of longer visits and different technical modalities of patient encounters on MCC patient and provider health outcomes, patient and provider satisfaction, and overall long term cost outcomes for MCC patients and the larger system?
Priority #6: Is it true that people with transportation issues are helped by telehealth and other tech modes (wearable monitors, portals) of connecting with providers?
Priority #6: Is it true that people with transportation issues are helped by telehealth and other tech modes (wearable monitors, portals) of connecting with providers?
Access to care. (T,0)
Time and $ affordability (W,2)
Effectiveness of Technology (1)
Telehealth (effectiveness) (R,2)
Header themes that informed prioritized topics #5 (tied), #8 and one unranked topic:
Header themes that informed prioritized topics #5 (tied), #8 and one unranked topic:
Priority #5 (tied): What is the impact on patient health of a communication system among diverse systems included in the MCC patient health experience?
Priority #5 (tied): What is the impact on patient health of a communication system among diverse systems included in the MCC patient health experience?
Priority #8: What are the barriers and facilitators to putting a single universal system of care into place across the continuum of care, including end of life? (for example a universal health records system)
Priority #8: What are the barriers and facilitators to putting a single universal system of care into place across the continuum of care, including end of life? (for example a universal health records system)
Priority theme (unranked but deemed similar) What does a truly coordinated team for MCC patients look like?
Priority theme (unranked but deemed similar) What does a truly coordinated team for MCC patients look like?
Team humanistic approach that includes all clinical members and matches skills to needs (M,2)
Provide patient, peer and healthcare team relationships through empathy and understanding with follow-up, consistency, communication and continuity. (F,0)
Universal provision of care for all (accountable to the team) and includes a Patient Bill of Rights with advocates and a communication contract. (F,5)
Caregiver included communication. It's more than medication. All providers, caregivers, patients on the same page and team communication. (T,5)
Coordination of Care (R,1)
Additional themes (headers) that were not defined or grouped into similar categories as the research priority topics
Additional themes (headers) that were not defined or grouped into similar categories as the research priority topics
Education from a young age to ask questions and understand the system, self advocacy and reduce pressure on the sick person when they can't advocate for themselves. Advocacy includes patients, providers and family.
Women's health and geriatric medicine
Encourage use of notes by nurses who see patients first and encourage GPs to read them.
Follow up support
Transparency between healthcare providers and patients to develop more trust
Consult other doctors if necessary
Extra value of successful engagement:
Extra value of successful engagement:
After our last CIRCLE sessions, a few partners continued to be engaged and motivated to further narrow down these research questions. Some considered the prioritized questions too broad to be considered true research questions.
After our last CIRCLE sessions, a few partners continued to be engaged and motivated to further narrow down these research questions. Some considered the prioritized questions too broad to be considered true research questions.
CIRCLE member comments from the redcap priority ranking survey:
CIRCLE member comments from the redcap priority ranking survey:
1st** #1 & #2 are almost the same topic or question. We should combine those (2) into one topic & or question . 2nd** I look at the Health care system of today. We are years away to a universal health communication and/or records system! We need to be asking questions that apply to what can change now or six months or a year from now!
I ranked the nine questions based on patient interaction with a single provider, then interaction with multiple providers. I didn't think that #9 and 10 were significant enough to make the list. If Medicare continues reimbursement for Telehealth visits, older patients with transportation issues will continue to have the choice between in-person vs. Telehealth visits. Although all hospice placements do not result in end-of-life, the emphasis is palliative care and not the cause of the medical condition. The patient's medical record should have a more prominent role in the interactive relationship between provider and patient. The electronic medical record has always been considered the provider's record when it should be regarded as the patient's. Current medical records are written for the provider's use and other physicians rather than the patient. It contains excessive medical acronyms, and lacks explanation for abnormal lab results. and is devoid of any narrative from the patient's perspective. It should be crafted for the patient's understanding and should contain a separate section to document patient input of what is important to them for their health. This section could contain a standard set of questions which the provider uses to interview the patient and records the input. Questions could be about what is important to the patient, any disagreements, new patient concerns, correction of errors, concurrence with treatment. These changes would make the medical record a useful tool for the patient to become a care partner.
the sooner we get to a universal healthcare system the better for everyone.
I had a hard time prioritizing the questions, because after reading all of them I was confused. I think some of the questions could/should have been combined. The wording of the questions did not make sense. The questions need help.
Some CIRCLE partners chose to continue narrowing each prioritized topic down into specific sub-questions:
Some CIRCLE partners chose to continue narrowing each prioritized topic down into specific sub-questions:
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