Connie's crow notes 2/14

Clinical Research Oriented Workshop (CROW) Meeting: Feb 14, 2019

Present:   Levi Bonnell, Justine Dee, Nancy Gell, Kairn Kelley, Ben Littenberg, Jen Oshita, Gail Rose, Lillian Savard, Adam Sprouse-Blum, Connie van Eeghen

1.                   Warm Up: Jokes of the season; Connie’s new publication in International Journal of Higher Education; Jen’s first publication on Speech Pathology in Health Services Research

2.                   Jen’s brainstorming process -  PCORI engagement award of a colleague for which Jen will have an opportunity to participate on Persons with Communication Disabilities

a.       Jen reviewed the classification system; she is focusing on where all these disabilities have problems with a communication function

                                                   i.      How does a communication disability affect your ability to participate in your own health care

                                                 ii.      Traditionally, Speech Pathology has focused on the patient/provider circle

                                               iii.      This grant is a Learning Community for disability/accessibility coordinators (DACs) in health care organizations, based on ACA rule

                                               iv.      This award will build infrastructure to conduct patient-centered research around patients who have disabilities (in general); Jen’s approach is communication disability

b.       Opportunities

                                                   i.      Review litigation against providers and study outcomes (Nexus Lexus)

                                                 ii.      Symposium of DACs in Texas in June 2019, per Kairn

                                               iii.      Interest: how to enable people with communications disabilities to participate in their health care.  Sub issues:

1.       How to identify those with communication disabilities (this covers multiple functions)

2.       There is no method for assessment at point of entry

                                               iv.      Key steps in the care process

1.       Communication disability condition (prevalence is known, likely)

2.       Present for other care

3.       Get care or go straight to Needs assessment               

4.       Needs assessment                                  (do these exist?)

5.       Accommodation/Rx                                (do these exist?)

6.       Life function, including future care

                                                 v.      Consider the Learning Community as a point of access to get consumer co-production of the refinement of a research idea, measures, and language to explain it in

                                               vi.      Remember: keep your focus on the “I” in FINER that matters to you

c.       Next step: check with the PI (Meagan) and make sure this process is on target

3.                   Next week: TBD, Justine or Levi

4.                   Future topics: Book “Factfullness: Why the world is not going to hell in a handbasket”

Recorded by: CvE