Thursday, October 19, 2023

Clinical Research Oriented Workshop (CROW) Meeting: Oct 19, 2023

 

Present:   Justine Dee, Juvena Hitt, Emily Houston, Amanda Kennedy, Ben Littenberg, Charlie McLean, Jen Oshita, Liliane Savard, Adam Sprouse Blum, Connie van Eeghen (10)

 1.                   Warm Up: UVM tech can definitely be “high need for attention” units

2.                   Liliane’s Healthcare Transition (HCT) Poster for the Health Equity Summit at UVM (Oct 29): Because autistic young adults have a lot of medical conditions (autoimmune conditions, musculoskeletal pain, mental health issues, obesity, depression, cardiovascular diseases, addiction and suicide to name a few) and adverse health impact, we feel that increasing awareness of internal medicine providers to the transition challenges and research needs for this population is a priority.  There are 2 version of the poster and Liliane wonders which was best.

3.                   Discussion

a.       Audience: students, clinicians, investigators, administrators; not lay group

b.       Slide 1

                                                   i.      More fun and engaging but wanted more structure found on Slide 2

c.       Slide 2: has improved greatly

                                                   i.      Photo: consider cropping out the vertical bar

1.       Does it convey a message from the poster?

2.       After the objective changed (below), maybe it does?

                                                 ii.      Can the investigator remove extraneous words to focus and clarify meaning?  Divided opinions on this.

                                               iii.      Explain what “transition” is about

                                               iv.      Objective: Identify the research gaps to improve healthcare transition for autistic youth in VT

1.       Found transition models from other sources which were evaluated by VT users

2.       Gaps were discussed but not identified in a structured way

3.       New objective: identify attitudes towards potential approaches (not, what do they need – could be included because the focus groups were asked what was missing, which was the implementation research, as well as evaluation research done so far is not patient-centered)

4.       Include stakeholders (as in Title)

                                                 v.      Consider Background before Objective

                                               vi.      Several ways to trim the wording (every bit of ink, every sentence/phrase/word/punctuation/letter – if you delete it and it still makes sense, then leave it out – Ben Littenberg, 10/19023)

                                              vii.      Participation graphics

1.       Move all participants graphic to bottom left, under Methods

2.       Eliminate the age related graphic for autist people top right; move the information into the new bottom left graphic

d.       Reflection on the funder: a substantial budget for patient centered research with a lot of demands; this is the key job of the PI: to stay with the focus of the research and still engage and partner with stakeholders

4.                   Schedule for rest of the month:

a.       TBD

 

Recorded by: CvE

Thursday, September 21, 2023

Clinical Research Oriented Workshop (CROW) Meeting: Sept 21, 2023

 

Present:   Justine Dee, Nancy Gell, Juvena Hitt, Amanda Kennedy, Jerry Landau, Ben Littenberg, Jen Oshita, Liliane Savard, Adam Sprouse Blum, Connie van Eeghen (10)

 1.                   Warm Up: Liliane may have sold her house! (which is why she is calling in from her car)

2.                   Liliane’s HCT Article and HCT Poster for the Health Equity Summit and a draft article on our healthcare transition project. The target journal is the Journal of General Internal Medicine.

a.       Liliane is not too happy with the introduction so some advice on cleaning up the message here would be helpful. But the main issue is to cut it from 5800 words down to 4000.

                                                   i.      Using a bird's eye view, what appears redundant or unhelpful in supporting the message around the gaps in research to address healthcare transition here in Vermont?

b.       Poster:

                                                   i.      A lot of text conveying many themes and subthemes; what’s most critical for your message

                                                 ii.      List the 8 themes; pick one

1.       Identify the actionable lessons

                                               iii.      Suggest removing the pie chart, unless needed for the audience

                                               iv.      Emphasize the message: supporting the transition is bigger than just thinking about transition. It requires training, accessibility, HC system supports… (the themes)

                                                 v.      Define accessibility to include communication; consider “sensory accessibility”

                                               vi.      How does each element support HCT

                                              vii.      Use acronyms to maximize efficiency

                                            viii.      Standardize formatting; choose one or two quotes

c.       Paper

                                                   i.      Make the 8th theme the conclusion – reorganize

                                                 ii.      [More that the recorder missed due to a conflict!]

3.                   Schedule for rest of the month:

a.       TBD

Recorded by: CvE