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Team Science Tuesday: Dora Raymaker - Shared screen with gallery view
Daphne Martschenko (she/hers)
26:22
The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants: https://pubmed.ncbi.nlm.nih.gov/30939892/
Daphne Martschenko (she/hers)
30:00
If you have questions please post them in the chat. Our team will ask any clarifying questions during the presentation itself but will otherwise reserve questions for the end (which you will be able to ask using the raise-hand function). We especially welcome questions from early career scholars.
Dave Jaffe
34:21
Hi Everyone - I teach a Winter Quarter course named Perspectives in Assistive Technology on Tue & Thu from 4:30 to 5:50pm in Lathrop Library 282. It explores the design, development, and use of technology that benefits people with disabilities and older adults. See the course website at: http://engr110.stanford.edu for much more information. Everyone is invited to attend class sessions to check out the awesome guest lecturers (two are MacArthur Foundation Fellows) - enrollment not required. Students who enroll in the course can work on individual or team projects that address a challenge experienced by a real individual with a disability or older adult. I am soliciting project suggestions and involvement of Stanford students with disabilities for the panel discussion in Week 3. Contact me - Dave Jaffe - at davejaffe@stanford.edu - Thanks
Holly Tabor (she|her|hers)
36:03
Thanks Dave!!
Kafunyi Mwamba
37:14
I'm working on a community-based participatory research. I wonder about the problematic research ethics in communities such as data control, confidentiality, interpretation of results, ownership, publication of results and dissemination procedures. What is your experience on this?
Holly Tabor (she|her|hers)
37:56
I’m curious to hear more about your overall funding strategy for community capacitation.
Holly Tabor (she|her|hers)
38:44
Also, how does your organization think about goals for the number of autistic people included over time, and how/whether to create opportunities to bring in new people/voices over time. Thanks.
Holly Tabor (she|her|hers)
40:19
One more q: you and your group have been successful at getting NIH funding for your team science approach. What advice do you have for other investigators about how to frame grant applications for this kind of inclusive team science approach? Thanks.
Joanne Tien (they/she)
40:34
How do you decide exactly how much to compensate community partners? I tend to think it is nice to offer as much as possible, but also know there can be a line with coercion/exploitation. Do you have a process for deciding on the exact compensation amount?
Holly Tabor (she|her|hers)
40:56
Also, how do you address the fact that many people with disabilities have income restrictions for accepting payment?
Meghan Halley
41:07
Thanks for such a wonderful talk. You may get to this, but if not, I would be interested to hear you talk about strategies for engagement upstream at the point where research priorities and funding are being determined, well before a particular project (and set of required aims) have already been set.
Daphne Martschenko (she/hers)
45:50
For more on AASPIRE: https://autismandhealth.org/
Julia Brown
46:22
In thinking about types of ND that are included in particular communities of identity, is there any overlap between community identities that thus require an expansion of research areas? e.g. ppl diagnosed with both autism and psychosis (a common dual diagnosis)
L Fung
47:30
Thank you for the wonderful talk! Do you feel CBPR can and should be applied to all types of research in the field of autism (e.g., neuroimaging, genetics), not only service research in the field?
Cybele S
53:03
Can we please get a copy of this video to share? thanks
Daphne Martschenko (she/hers)
53:29
We will be posting the recording on the SCBE website, where you will find our past and upcoming Team Science Tuesdays: https://med.stanford.edu/bioethics/events/team-science-tuesday.html
Dave Jaffe
54:35
How about the slides too?
Daphne Martschenko (she/hers)
54:58
I will have to check with Dr. Raymaker about sharing slides, but at the very least you will be able to see them via the recording.
Cybele S
56:28
Is there a way to start an extended group to continue this conversation after today? This is the most exciting topic in the world.
Cybele S
57:05
(Or are there existing groups related to this that I can join?)
Daphne Martschenko (she/hers)
59:01
I would be happy to collect the emails of anyone who wants to continue the conversation after this on this Google sheet: https://docs.google.com/spreadsheets/d/1QwgTQE_liex4VPxHbNR0-eLVCCe_aY-9NFjurRF6Taw/edit?usp=sharing — you would be giving permission for others to reach out to you
Zhen Lin
59:07
Ok to repeat the name of the NIH stem program just mentioned in the chat? Thanks for the wonderful presentation!
Joanne Tien (they/she)
01:01:47
Thank you!
Cybele S
01:02:34
LOVE THIS QUESTION yes!
Daphne Martschenko (she/hers)
01:06:41
Can’t believe we’re almost out of time. Thank you for joining us! We always welcome your feedback. We'd love to hear what you think, please fill out our evaluation form here: https://stanforduniversity.qualtrics.com/jfe/form/SV_0TjS9sJvUAxXxyu
Cybele S
01:07:08
Not that many people on the sign up sheet yet - sign up if interested: https://docs.google.com/spreadsheets/d/1QwgTQE_liex4VPxHbNR0-eLVCCe_aY-9NFjurRF6Taw/edit#gid=0
Brandy Fox
01:07:15
These are great tips! Thank you so much
Meghan Halley
01:07:27
Thank you so much!
Rhonda Moore (She/Her/Hers)
01:07:50
Thanks so much
Julia Brown
01:08:03
Thank you!
Rhonda Moore (She/Her/Hers)
01:08:03
Excellent talk
Justin Steinberg
01:08:11
Thank you very much!
Daphne Martschenko (she/hers)
01:08:16
Please join us in January for our next session. You can learn more: https://med.stanford.edu/bioethics/events/team-science-tuesday.html
Jessica Moon
01:08:45
What is the sign up sheet for?
Cybele S
01:09:18
I think to continue discussions on this topic
Daphne Martschenko (she/hers)
01:09:20
Sign-up sheet if you want to continue these conversations offline with others who are interested. You’re just giving permission for folks to contact you if they see an overlap in interest
Cybele S
01:09:39
Could organize further discussion on this topic…
L Fung
01:10:13
Yay! Completely agree.
L Fung
01:10:32
Thank you!
Cybele S
01:10:32
Super important work.
Joanne Victoria Gersowsky (she/her)
01:10:40
Thanks this has been so motivating!