Research in CTS (formerly CROW) Meeting: January 25, 2024

 

Present:   Juvena Hitt, Amanda Kennedy, Ben Littenberg, Liliane Savard, Connie van Eeghen (5)

 1.                   Warm Up:

a.       Amanda: How to revitalize CROW – make mandatory for research students

b.       Ben attended NNE CTR webinar on Team Science, with some strategies:

                                                   i.      Restate the group’s values

                                                 ii.      Restate the research question

                                               iii.      Attempts at communication, such as weekly newsletter

c.       Connie: interest in reviving past IBH-PC qualitative study related to Team Science

2.                   Bedard, What Would It Mean for Scientists to Listen to Patients, New Yorker 2024

a.       Amazing that you can make news by being respectful to patients

b.       How do you start to revise the culture of medical care to support better relationships

                                                   i.      Why are doctors bad at this? Well, car mechanics and lawyers are too

c.       IBH-PC measured empathy and patient-centeredness; positive association with high integration

                                                   i.      Dan Mullin: 1) PCPs with colocated BH providers are more likely to explore, acknowledge, and encourage patient disclosure of emotionally charged content when they are confident of their ability to connect a patient to a 1-1 encounter with a BH provider should more complex needs arise.  

                                                 ii.      2) When BH providers practice collaboratively with PCPs there are opportunities for BH providers to model verbal and non-verbal behaviors that communicate empathy.  This modeling and learning may help PCPs to strength their ability to respond empathically when they are confronted with a challenging patient encounter.  

                                               iii.      3) Collaborative, inter-professional practice necessarily expands the range of biopsychosocial concerns that both BH and medical providers are aware of.  When a BH provider practices alongside a PCP they gain greater appreciation for the impact of medical concerns on psychosocial wellbeing.  Likewise, when a medical provider provides care of patients in collaboration with a BH provider the PCP gains a greater understanding of the impact of psychosocial phenomena (trauma, addiction, grief, depression) on medical conditions and the treatment of medical conditions.

d.       All PCPs want to do a good job but EBP is like an onion: the  more you peel back, the more you cry and the  more it stinks

                                                   i.      Listening to patients is a known EBP

e.       Excerpt: “Last year, investigators from the RECOVER Initiative, a government-sponsored Long COVID research effort, proposed a carefully modelled framework that identified twelve symptoms frequently associated with the disease. They published their results in the Journal of the American Medical Association, in an article filled with caveats about how this work was only the first step toward deriving a more precise Long COVID definition. But some Long COVID patient-advocacy groups swiftly denounced the study, lamenting that the framework’s scoring cutoff would leave thousands of sick people without a diagnosis. One such group called the RECOVER criteria “regressive and blunt.” More than forty-two thousand people have sent letters to the N.I.H. demanding that it retract the study and its scoring system.”

                                                   i.      How to deal with this?

1.       Create a new term

2.       Provide different categories of Long Covid, one of which includes the criteria

                                                 ii.      Why didn’t RECOVER figure this out ahead of time?

1.       Knew that they were leaving people out

2.       Either didn’t know the pushback and/or wanted to define the entity for their own purposes

                                               iii.      Juvena was a participate in RECOVER, involving an antibody test

f.        Turning a symptom/syndrome into a diagnosis is an essential step to treatment; doing that well is the difference of benefit and harm

                                                   i.      How to turn gaslighting into validation/confirmation of patient experience

3.                   Next meeting: Feb 1 2024, topic TBD

Recorded by: CvE